# WWYD/just need to be sad



## NiteNicole (May 19, 2003)

http://www.mothering.com/discussions....php?t=1145750

There is some background. My almost four year old has developed a fake limp. Which wouldn't be bad except that it makes her really SLOW. And the more we remind her or hold her hand and try to get her to move faster, the more she resists. She used to hold back a bit and kind of drag her feet, now she just throws herself on the ground and kind of goes limp. In the past few days, she's doing this ALL. THE. TIME. It's been going on for a couple of weeks and getting worse, but now it's really bad. She won't run when she plays, she won't won't walk right EVER for ANYTHING.

So today we planned to go to a movie. Ok, the morning didn't start well. We got half way to the vet (hard to get a Saturday appt and it's about 25 miles away) and she freaked out that she had to go to the bathroom RIGHT NOW. There is nowhere to stop before the vet and it was fairly far to go so we turned around and stopped at my mom's which was closer than our house. Grab her up and carry her inside because she won't pick up her feet and walk (btw, she's 54 pounds and tall and I'll be spending some time with my chiropractor next week because of this), get her into the bathroom and oh hee hee, guess I didn't have to go. The only upside is that the vet agrees to work us in and my mom said I could leave my child with her.

Anyway, the movie. We get there, get our popcorn (movies, like everything else, are not close. It's 35 miles away and involved a LOT of driving on my part as we had to do the vet too), get seated with much fake limping but I am trying really hard to ignore it. Movie starts. FIVE times she claimed she had to go to the bathroom and then she didn't actually need to go. ALL FIVE TIMES she did that stupid fake limp dawdling crap and just kind of falls on the floor when I try to hurry her. I'm telling her the whole time - we are in the way. We are blocking people. We are missing the movie. The fourth time I said, if you can not stop this then we have to leave. We're ruining it for everyone. We're spending the whole time going to the batrhoom. She had plenty of notice.

The fifth time, when I practically had to DRAG her the whole way there and back on the floor because she wouldn't get up, I said ok. We're going. I carried her AGAIN (my back is killing me), managed to get my husband's attention, and met him outside. We tossed our snacks and left.

She finally figures out I'm serious and gets upset. We had other things planned - shopping for our TorT candy and an early dinner and a place we all like, but those things all involve WALKING and I'm not spending my WHOLE DAY dragging her around.

No, she does not have a real leg/foot/hip problem and no, she does not have any kind of issues making her feel like she has to go to the bathroom. I never fuss about the bathroom fake out because, ya know, you just can't. Sometimes she just gets on these little kicks and honestly? I know that she knows she can make us jump when she says she has to go.

She cried and screamed all the way home. It was a long drive.

I do think leaving was the right thing to do. I could not get up and down every five minutes for two hours. It was not fair to the people behind us, or the people in front as she kept putting her hands along the backs of their chairs and it was clearly ticking off the mom in that group. It's also unfair for me to have to physically draaaag her back and forth and up and down steps.

She was not hungry, bored, or tired. I really think this is something she's got and she knows there's not a damn thing I can do about it.

Generally, we get along great. I'm a SAHM. I'm pretty patient and other than these two things, we don't have a lot of problems. She has a fair amount of input in how her day goes, but not more than she can handle. It's mostly the two of us so it's just not a problem for her to give her input. We take her places as often as we can and she can walk just fine and has been for a long time.

I want to be a good mom. I want to be close to my daughter. My parents never played with us, never took us to movies or plays or zoos. That just wasn't their thing. I ENJOY doing those things with my daughter. I WANT to do them. But this walking thing is becoming just impossible to work around. She is too big for a stroller and too heavy to carry and there is nothing WRONG with her she just needs to STOP.

I have tried ignoring it. I've tried holding her hand and just stepping up the pace, thinking she'll have to move along - she just resists more. I have tried reminding her that she needs to move faster and why (because it would get suck to get stepped on? Or hit by a car? Because I'm not strong enough to drag her?).

I'm just so sad. We had a fun afternoon planned. In my childhood, this would have been a pretty special day. I like us doing things together. But there is nothing you can do when one of you falls down and refuses to walk. I've just had it. I feel so sad because I know she's dissappointed and this was supposed to be fun and now it just sucks. We had plans to do something with my family tonight and we won't be doing that either.

We live so far away from anything. We just wasted $50, not including gas, on this episode. I'm lonley. I have no friends locally. I have my family and now I won't even be getting out to see them. I won't be doing anything. But what else can I do? I can't carry her and she won't walk.

If this was your kid, what would you do?


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## gabysmom617 (Nov 26, 2005)

honestly, if this was my kid, i'd be inclined to take him to the dr just to make 100% sure that it's not anything.

I have thought that my kid (he's 4 years old) was faking about something and have been wrong before. but it as never anything as serious as what you're describing though. In those instances, he seemed to be so obviously faking. I think that, unless they are crying, it can sometimes be easy to mistake a 4 year old's symptoms as just pretend.

But when he was actually faking, he could easily be distracted out of it and would forget. He went through a jag where he is like, "but my legs are broken ma. I need a wheelchair." Sometimes he obsessed over it. but as soon as we'd get outside or to the playground or somewhere exciting that he'd want to run around to do, he'd totally forget about his "broken legs".

If it's something that nothing will distract her from, not even an outing to the movies or a trip to the park or something, I'd take that as a sign that it might be something legitimately going on. the limping in combination with the repeatedly having to pee and not peeing are very specific and related symptoms that some types of ailments have in common, and does not seem to be random fake symptoms that a 4yo would come up with herself. Not unless she's been reading some medical literature.









I know you said you know it's not real, but you didn't explain how you were sure. Is she easily distracted out of it? Has she been to the doctor for it? If not, and it's something persistant that she won't be distracted out of, how can you be so sure? What if it's something legitimately wrong and you just fuss at her and never get it checked out? Just questions I would consider if it was my child.

ETA:
Has she ever had a urinary tract infection? They cause constant urge to pee without producing much urine if. If it's progressed up to her kidneys, her back might hurt. You really should check it just to be sure. Other nerve ailments could also cause symptoms like that.

actually, the more I think about it the more it sounds uti'ish.


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## feminist~mama (Mar 6, 2002)

Oh mama- I couldn't read this and not respond!







I'm so sorry and I really feel how frustrated and upset you are- I'm sure I'd feel exactly the same way! I read your first thread too- it sounds like you've been dealing with this for a while!

Does you dd have anything to say about why she likes to walk this way? Have you tried telling her that she's free to do it when she's walking by herself but that when she's walking with you it's not acceptable? Or trying a "silly walk" that you both do for X minutes, followed by walking normally for the important parts (like parking lots or crossing the street)?

Honestly, it sounds like a power/control thing that your dd is really enjoying manipulating. Failing to find a way to work together to change this behavior, I'd likely go with immediate, hopefully logical, consequences.

Good luck!


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## chaimom (Aug 22, 2007)

I sense how sad you are and I'm very sorry. It sounds like you're feeling very trapped and like you feel you don't have many options. I hope things improve.

My suggestion-- tell her she's got to go to the doctor since her limp is interfering with her life. Tell her it's not normal for her to have to go to the bathroom so often, and the doctor will need to investigate that as well.

I would really take her, too, not just make a threat. Perhaps there is a medical issue going on. Perhaps it's a different issue and the doctor would have some insight that, too.

Best of luck.


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## secondseconds (Jun 22, 2005)

Does she ever say WHY she is walking that way?


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## CarrieMF (Mar 7, 2004)

Quote:

Honestly, it sounds like a power/control thing that your dd is really enjoying manipulating.
I've read both threads & I agree. She knows exactly what she's doing it. Is it irritating, yes. At home ignore it. If it means she pees her pants then she pees her pants & at 3.5 she can definitly help clean that mess up. If she eats cold food because it took her too long then so be it.

When you're out, give 1 clear reminder that if she falls down like that & cannot walk properly you are leaving. No if's, ands or buts about it. You will leave. She will act like she is today, upset that you went home but it will be reinforcing to her that the behaviour is not acceptable.

You need to be firm in your expectations, give 1 reminder & don't bring attention to it again for that event. She will not be happy about it, but she is old enough to understand that her actions have consequences.


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## NiteNicole (May 19, 2003)

The bathroom thing - she's never had a UTI or anything like that. Every now and then she'll have a day where she tells me she has to go about 40 bajillion times. Mostly it's on a day when I'm busy and not paying a ton of attention to her (not ignoring her, but doing my own thing with her along for the ride - like cleaning up or whatever, instead of being felxible enough to do whatever she wants on and off through the day, which is how most of our days are - she's used to my being pretty responsive when she's in the mood to have my attention) so it seems obvious that she's just trying to get my attention because "I have to potty" never fails. Today I think it was in response to my trying to hurry her along. For the whole ride home and since we've been home, she's never mentioned needing to go.

As for the limp and slow walking thing, until about a week ago she could be distracted out if it. We went to the park twice that week and both times, magically, no limp. But this week I've had a lot of things I HAVE to get done and she's slowed me down on every single thing with that slow walk. Her natural inclination has always been to resist if you try to hurry her for anything, even something she wants to do.

I think the limp at this point is both habit and controling and she's just too stubborn and dug in about it to quit.

Nothing is hurting her and if I walk ahead or behind when my husband walks with her you can clearly see that she's just falling to her knees, not getting her feet tangled or tripping up.

When I ask her why she does it, she tells me "oh, ha ha, I think I'm just a little clumsy."


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## gabysmom617 (Nov 26, 2005)

Oh, ok. if it's something that she's distracted out of and only does in very specific circumstances, I agree, it might be a power/control thing. I'm sorry, I don't know what to suggest in that situation.


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## NiteNicole (May 19, 2003)

Quote:


Originally Posted by *CarrieMF* 
I've read both threads & I agree. She knows exactly what she's doing it. Is it irritating, yes. At home ignore it. If it means she pees her pants then she pees her pants & at 3.5 she can definitly help clean that mess up. If she eats cold food because it took her too long then so be it.

When you're out, give 1 clear reminder that if she falls down like that & cannot walk properly you are leaving. No if's, ands or buts about it. You will leave. She will act like she is today, upset that you went home but it will be reinforcing to her that the behaviour is not acceptable.

You need to be firm in your expectations, give 1 reminder & don't bring attention to it again for that event. She will not be happy about it, but she is old enough to understand that her actions have consequences.

My first instinct is to agree with all of that. That it's just a habit she's gotten into and something she's too dug in to stop doing. I can clearly remember being three and four and my parents asking me to do something fairly reasonable, then getting all self concious about it and not even really understanding WHY I was refusing to do whatever it was. I can actually think of a few examples when I knew I was being stubborn over something dumb but it was like I just couldn't stop. I'm worried that if I keep making a thing about it, she'll never stop.

I just want her to stop. I want to do fun things. We have so many things planned over the next few weeks and I'm so sad about today. I don't want them all to turn out like this.


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## secondseconds (Jun 22, 2005)

I had a friend once whose daughter at 4 was peeing her pants a lot. They took her to the doctor who said "Okay! You're all better now! You won't have to wet your pants anymore, can can go ahead and pee on the toilet!" and like that, she stopped peeing her pants. Something about the doctor saying that was all her little head needed to stop. Maybe something similar would help your daughter?


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## EviesMom (Nov 30, 2004)

Yup, we'd go to the doctor, and if there is really no medical reason, I would follow through on two basic rules: walk correctly. do not attempt bathroom fake-outs. If she's really recently potty trained, then the fake-out might be understandable. Otherwise, she's doing it because she knows it gets under your skin. So don't let her. The very first key thing is to not get made or annoyed. Just bored with it.

I would plan but not do dozens and dozens of fun things--well, I thought we would go to the museum today. Will you walk properly and none of the fake limp nonsense or bathroom fake outs? You understand that if you limp, even once, I will pick you up and we will leave. Then do. The FIRST time she does it, not the fifth. Yes, it will suck, for the first 2-3 things you leave, but she won't keep doing it. I would deal with the bathroom fake out-ONCE-as well. Then I'd put a pull up on her during that first bathroom trip and tell her you're not coming back to the bathroom for x minutes (at least 30 IMO, but we all have strong bladders; not 5 minutes anyway).


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## NiteNicole (May 19, 2003)

That's a very good point...she knows there's nothing wrong, but maybe having someone else tell her she's fine in front of me may take away her excuse.

I admit I'm a little doctor-shy. When she was born, her hips were a little clicky. Her ped sent us to an ortho who totally took us for a ride. She was fine by six weeks according to the ped but the ortho just kept pushing more and more - up to a body cast and including surgery. Obviously I asked for a second opinion and the second ortho confirmed what we suspected - she was fine. Her hips were ok and someone was actually trying to set my baby up for a body cast and surgery! So now unless there is something really wrong (and knock wood, she's only had one cold and ear infection in her whole life), we do not go to the doctor. Although I promise if I thought there was a chance this was something real or she was hurting, I would take her like yesterday.

I know it probably does sound like something might be wrong, but having watched the progression and her response to our trying to get her to stop, it is a control thing.


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## NiteNicole (May 19, 2003)

Quote:

I would plan but not do dozens and dozens of fun things--well, I thought we would go to the museum today. Will you walk properly and none of the fake limp nonsense or bathroom fake outs? You understand that if you limp, even once, I will pick you up and we will leave. Then do. The FIRST time she does it, not the fifth. Yes, it will suck, for the first 2-3 things you leave, but she won't keep doing it. I would deal with the bathroom fake out-ONCE-as well. Then I'd put a pull up on her during that first bathroom trip and tell her you're not coming back to the bathroom for x minutes (at least 30 IMO, but we all have strong bladders; not 5 minutes anyway).
I get what you're saying but I think I need to kind of explain our situation. We live about half an hour in any direction from...well, anything. Going to the movies or zoo or even a park is a BIG DEAL for her. Those things are all far away and involve a lot of time and resources to get us packed up, in the car, to the destination, etc. I feel it's wrong to set her up like that and also, what a waste of my time and resources. I can not drive half an hour (MINIMUM, but really more like just over an hour for most things, and in only one direction) for her to take two steps and fall down so I can pack her back in the car and drive home. It may make logical sense, but it is not practical at all for us.

I can also promise you that if I tell her she can't go back to the bathroom for x minutes, she's going to FREAK OUT. She has no concept of time, she's not even four, and it's like challenging her to pee on herself right then and there. I don't want to force a battle of wills with a three year old. It's not fair to either of us. We've had a handfull of days like this in the past three months or so and I promise, that would just be making trouble. I get that it makes logical sense, but I just don't see it doing anything but making the situation worse.

I don't mean to shoot down advice, I appreciate any and all input and a lot of the above was certainly my very first gut reaction when this stuff started happening but it's just gotten worse so I'm really hesitant to be the one who takes it to the next level.

But really really really, EVERYONE, thank you for the input! The advice I'm getting from my family is mostly just "well, you're going to have to spank her" or "my kids would never have the nerve!" Yeah, THANKS. HELPFUL. TOTALLY. But then I guess not a lot of people have experience with a three year old and a fake limp.

I just hate this. We have such a good relationship apart from this. She's so funny and fun. And then there's this.


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## no5no5 (Feb 4, 2008)

I think if you are at the point where she has been walking like this progressively more and more, and it is getting worse and worse, and has now been constant for a week, it is very unlikely to be something you can get rid of without professional help. Even if this is something she started just for fun, it sounds like she's been doing it for so long and so consistently that it is by now probably the most comfortable way (emotionally or physically or both) for her to walk.

I do think that it is entirely possible that she has a genuine physical problem that makes it difficult (but not impossible) for her to walk normally, and that the few times she's been "distracted" out of it are actually times she's been motivated to push past whatever is normally stopping her from walking correctly. I have joint problems that sometimes cause an abnormal gait, but I am nonetheless capable of walking normally if I want to (which I always do in public, despite the extra pain it may cause).

It doesn't sound like you have seen a doctor yet. I would do so. At the very least it sends the message that you take her and her needs seriously and you are going to do what you can to help her. Perhaps the doctor will rule out medical problems but nonetheless recommend therapy, and you might find it to be very helpful.

ETA: I just read your clarification above, and I have to say...you are talking about a child who has previously had an ortho recommend intervention for a hip problem, which advice you did not take??? I get that you got a second opinion, and the second ortho said she was fine...but what if the first ortho was right? If my child had a prior diagnosis of hip problems (even if they were just potential problems) and subsequently developed an abnormal gait, I would be back at the ortho's immediately. Take her to the second ortho, if it will make you feel better, but do take her.


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## NiteNicole (May 19, 2003)

She never says it hurts or is uncomfortable and she's walked just fine since she was just under a year old. She's been watched very closely because she did have clicky hips and she's seen ped ortho specialists on and off up until this year. She's had x rays and ultrasounds on her hips and legs. Unless this is something that just developed like, three weeks ago out of the blue, there's nothing wrong with her.

I don't know if you read my other post - it was long so I can summarize:
there has been a progression from funny little fun walk to slow fake limp. The more I encourage her to walk faster and walk correctly, the more she hangs back and drags her feet.

I really really really don't think there's anything wrong with her. I really really really think it's a control issue. If I thought there was even slightly a chance that she had an actual medial issue, we would have seen a doctor already.

Quote:

I just read your clarification above, and I have to say...you are talking about a child who has previously had an ortho recommend intervention for a hip problem, which advice you did not take??? I get that you got a second opinion, and the second ortho said she was fine...but what if the first ortho was right?
I have been sitting here trying to figure out how best to address this with you but I am just not going to. It's a huge long saga and you'll just have to take my word for it.

Anyway, she's just gotten up from a nap (and I'm going to be up all night) and she's just run down the hall with no problems. She's walking around fine. She's forgotten about it. We'll see how long it lasts.


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## LuckyMommaToo (Aug 14, 2003)

Quote:

You understand that if you limp, even once, I will pick you up and we will leave. Then do. The FIRST time she does it, not the fifth. Yes, it will suck, for the first 2-3 things you leave, but she won't keep doing it.
This. I understand what you're saying about it being inconvenient, etc, but sometimes that's what parenting is. I have two kids, and on occasion, we've gotten somewhere, and then had to leave 10 minutes later b/c one of the two couldn't handle it. Talk about inconvenient, and unfair. But that's life, you know?

A couple times of doing that and you'd be done. Instead this is dragging out weeks. She is learning that she's in charge, and I think that's a little scary for a kid.

I would probably also make an appt with a health care provider, as a PP said.

-e


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## EviesMom (Nov 30, 2004)

Yeah, if she's not yet four, or relatively recently potty trained, x minutes might not work. Probably also not good to just put her in pull ups for movies, etc. because of her age, concern about potty regression?

At a minimum, know that the potty thing shouldn't last much longer, as she starts going on her own; you could probably start that at home "okay, just go, you can do it without help."

I know what you're saying about going somewhere, I have 2 kids and travel only by subway/bus. It takes us over an hour to get to the zoo, for example, so packing up would be a big strain for us too.

I have a double stroller, and if it's something that I felt it was unfair to drag DS or me away from and DD was out of control (she doesn't do this anymore, but a year or 18 months ago, she did), it was "one strike, in the stroller you go and in you stay." She was totally too big to need a stroller, but... We also didn't go on outings very far away for a few weeks so we could pack it in quickly.

Also though, there has to be some reason she's doing it. Is it better if you spend more time/attention with her just before? Was she afraid of the movie? Talking to her calmly about this stuff making you sad, making it hard for you to "do your job as mom," making it hard for you to spend time together, might also help. Not like a guilt trip, just like "Hey, we do-blah blah blah-together and you really enjoy that; I would like to do blah-blah-blah together and be able to really enjoy it."


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## purslaine (Feb 20, 2006)

Did she fake limp at your moms?

It might be worth it to drop her off at your mother for a little bit to see if she is fake limping there.....

If she isn't - then you are bang on and it is a power thing.

TBH honest I see little wrong with putting her in a pull-up and stroller when you go out. I have put 5o pund children in strollers before - they are heavy to push but it is much easier than being carried!

There are 2 ways out of a power struggle - either you push on through and be extremely consistant and hard a$$ (in a good way, of course) or you give her what she wants and wait for her to move out of it on her own accord (which will happen).

Hugs, mama! Hang in there.....

Kathy


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## no5no5 (Feb 4, 2008)

Quote:


Originally Posted by *NiteNicole* 
She never says it hurts or is uncomfortable and she's walked just fine since she was just under a year old. She's been watched very closely because she did have clicky hips and she's seen ped ortho specialists on and off up until this year. She's had x rays and ultrasounds on her hips and legs. Unless this is something that just developed like, three weeks ago out of the blue, there's nothing wrong with her.

I don't know if you read my other post - it was long so I can summarize:
there has been a progression from funny little fun walk to slow fake limp. The more I encourage her to walk faster and walk correctly, the more she hangs back and drags her feet.

I really really really don't think there's anything wrong with her. I really really really think it's a control issue. If I thought there was even slightly a chance that she had an actual medial issue, we would have seen a doctor already.

Yes, I read it. I would expect to see a progressive limp as a result of a real medical problem. I would expect it less in a faking situation. But let me be perfectly clear: A child who refuses for a week to walk without throwing herself to the ground every few steps, injuring herself in the process, is, IMO, a child who needs professional help, of one kind or another. Even if she is faking. Which, honestly, I think is far from clear.


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## victoriaaustin (Apr 22, 2007)

This sounds like a real mess of a situation, and I would seek professional help if I were dealing with it. From what you're saying, it sounds like a battle of wills, and I personally would want to be sure that there wasn't an underlying physical or emotional issue aggravating or causing it. I'd want strategies from a professional (a therapist? child psychologist?) and someone to help me and my child get through this and move on.

I'm really sorry you're dealing with this.


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## NiteNicole (May 19, 2003)

I asked if she was faking limping at my moms and they said not that they noticed, which probably means not at all. I was slightly worried that my dad would take it in his head to "take care of this" and it would be an issue. Also, my mom certainly would have called her on it. No back and forth potty issues either.

This is not the first time we've left somewhere because of some issue so I know sometimes ya just have to. Ugh, I hate it. And when she starts some new weird phase (or like when she wouldn't sleep at night or the potty training wasn't going as well as I'd hoped) I do start to panic that it's ALWAYS going to be like this and it will NEVER get better and I sort of have some internal freak outs. In reality, she hits new phases very suddenly (like never tried to walk, just one day got up and walked) and ends them just as quickly and I try to remind myself of that but then I see myself carting her out of every store we go in till she's fifteen and I get a little fluttery.

I honestly thought she was probably past the wt limit for strollers at this point. I haven't used ours since she could walk. Oddly, she has almost always been very cooperative in situations where we might need one so we just didn't use it and let her walk.

I have more and will respond more later, but right now she's buzzing around my feet for my attention so we're going to go outside for a bit.

Thanks SO MUCH for all the input. It helps to just talk through it.


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## A&A (Apr 5, 2004)

I saw a documentary about a boy who had a serious problem in his leg but everyone thought he was faking his limp.


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## TinyMama (Sep 4, 2007)

Just popping in here.









Personally, I would take her to the dr. Assuming he/she says it's nothing, I might try a "fake" sickbed for a few days. Set her up in bed with books and a drink as though she is sick. Fawn all over her at first--"Oh, I'm so sorry your leg hurts. I hope it feels better soon, and you can walk properly again. When you can, we will do _______. Now I have some work to do, while you get better." Then leave. Continue boring her for a few days.

I can't imagine a healthy kid who could stay in bed all day for more than a day or two. This way, she gets to exert control over you, and *it gives her a way to give up the limp while maintaining her dignity*. I can't see any way for her to just stop if it is a power thing--she's protecting her pride here.


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## Dandelionkid (Mar 6, 2007)

Bring a book with you (for yourself). Sit down at the first sign of a limp and tell her you'll start going again when she is ready to move. Read your book. Disengage every time.


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## 4evermom (Feb 3, 2005)

Quote:


Originally Posted by *TinyMama* 
Just popping in here.









Personally, I would take her to the dr. Assuming he/she says it's nothing, I might try a "fake" sickbed for a few days. Set her up in bed with books and a drink as though she is sick. Fawn all over her at first--"Oh, I'm so sorry your leg hurts. I hope it feels better soon, and you can walk properly again. When you can, we will do _______. Now I have some work to do, while you get better." Then leave. Continue boring her for a few days.

I can't imagine a healthy kid who could stay in bed all day for more than a day or two. This way, she gets to exert control over you, and *it gives her a way to give up the limp while maintaining her dignity*. I can't see any way for her to just stop if it is a power thing--she's protecting her pride here.









I like that idea.

My ds does get foot pain. Maybe due to high arches? I don't know, still trying to problem solve it. But he will run run run at the playground because he is distracted. In more boring situations (walking to and from the bus or on errands) he will complain more. So just because a kid runs and plays when they are happy doesn't mean that they don't have a problem. When they are tired, bored, hungry or cranky, their pain threshold can be much lower. Just wanted to point that out in general, not to the OP particularly.

My ds was a stroller boy until he was about 5. I loved it. He was happy. I could get out and about with a happy child and get exercise.


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## 4evermom (Feb 3, 2005)

You could also cajole her to go slower because you are concerned she is going too fast and might fall.


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## karne (Jul 6, 2005)

I think that you have absolutely nothing to lose by taking your dd to the doctor. Zero. If there is a physical issue, she is in distress, and needs intervention. If she is having an emotional/psychological issue, she is in distress, and needs help. It's the same thing. Kids behavior tells us something about what's going on physically or emotionally for them. Our message to them should be that we hear them, and we can help. If the help from ourselves doesn't do the trick, help from a doctor or therapist will. But above all, it's our job to help them when they need help.


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## The4OfUs (May 23, 2005)

Quote:


Originally Posted by *TinyMama* 
Just popping in here.









Personally, I would take her to the dr. Assuming he/she says it's nothing, I might try a "fake" sickbed for a few days. Set her up in bed with books and a drink as though she is sick. Fawn all over her at first--"Oh, I'm so sorry your leg hurts. I hope it feels better soon, and you can walk properly again. When you can, we will do _______. Now I have some work to do, while you get better." Then leave. Continue boring her for a few days.

I can't imagine a healthy kid who could stay in bed all day for more than a day or two. This way, she gets to exert control over you, and *it gives her a way to give up the limp while maintaining her dignity*. I can't see any way for her to just stop if it is a power thing--she's protecting her pride here.


Quote:


Originally Posted by *Dandelionkid* 
Bring a book with you (for yourself). Sit down at the first sign of a limp and tell her you'll start going again when she is ready to move. Read your book. Disengage every time.

Wow, what a tough situation. I like these two suggestions, personally. I don't know how much I'd fawn with the "sick bed", because I'm not a fawner. But I'd absolutely, if she had a "problem", make her rest to help "heal" her up. That's how my mom kept me from faking sick out of school. When I was home sick from school, I was in bed all day with a couple books, maybe some paper and crayons, resting. No toys, no TV. no incentive to stay home unless I really needed to.







She wasn't mean about it, but wasn't overly sympathetic either - she was kind, and gentle, but firm.

I would also invest in a portable potty for your car. You can get a pottette for like, $10 - http://www.kalencom.com/main/page.as...=8&id_detail=8 . We have one and it's about one of the best $10 I've ever spent. we're never far from a potty. I use small bags and adult incontinence pads instead of buying their (expensive) refills. I know that wouldn't help when you're in a store or like at the movies, but it would help in the car...in the movie situation, I would ahve done exactly the same as you did, probably after the 3rd time though. Actually, I would have probably tried to find an aisle seat if possible after the second time, and then left after the third time - not to be punitive, but because she was clearly a) not into the movie and b) not able to control herself enough to get into the movie, which as you said wasn't fair for anyone involved.

Soo, yeah - I don't envy you on this one. I'd take her to t adoctor on the outside chance there actually is something wrong, but also for the "you're OK" factor...do a "sick bed" for a few days, and have an honest talk with her about how this really is a drag and that it's difficult to want to do things with her when she does this.

Good luck.


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## The4OfUs (May 23, 2005)

Quote:


Originally Posted by *karne* 
I think that you have absolutely nothing to lose by taking your dd to the doctor. Zero. If there is a physical issue, she is in distress, and needs intervention. If she is having an emotional/psychological issue, she is in distress, and needs help. It's the same thing. Kids behavior tells us something about what's going on physically or emotionally for them. Our message to them should be that we hear them, and we can help. If the help from ourselves doesn't do the trick, help from a doctor or therapist will. But above all, it's our job to help them when they need help.

This is very true, too.

Our son has been in play therapy for a while for some anxiety/perfectionism that had been affecting his daily functioning...it was once a month or so, then once every couple weeks, then once a week, then daily and it became clear to us that he needed osme help working through it - it's been 4 months that he's been in play therapy and it has been GREAT for him.


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## madskye (Feb 20, 2006)

I'd do a doctor visit, too. My neighbor just told me yesterday that when her DD was 2, she had a flu infection in her hip that made her limp intermittently and fall down sometimes?! I didn't even know that could happen--but I'd rule out the possibility that something is wrong first and then go from there.

You mentioned she is a big kid, too heavy to carry--if the limp really is fake, do you think it's because her weight is making walking tough for her, or is she in great shape just large for her age?


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## purslaine (Feb 20, 2006)

I do hear you, and greatly empathise with you, on not wanting to go to the doctor.

Once upon a time my kids had teeth issues. I went for what I thought was my last tooth appointment (oh, number 8 or so in 4 months - and it was an hour away!) only to be told DD needed another appointment and I cried. Literally cried. I imagine you have been put through the wringer with the hip thing and I know it is not easy.

That being said, she does _need_ to see a doctor. You have to find the strength to do this. If she does (and she probably doesn't - mama does know best) have an issue you are going to feel like crap for being impatient with her. She is going to feel like no one believes her. So...take a deep breath and make an appointment. Sometimes I make appointments for a week or two later - hoping the situation will resolve itself by then. Sometimes it does









Another thought - I am not overly suprised she is limping. This is a girl who has had her legs/hips looked over since birth - if she is going to fake something - this would be the area for her, Yk? Kids who have ear infections are probably more likely to fake ear infections, sore throats fake sore throats - etc, because it is what they know.

Hugs!

kathy


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## lotusdebi (Aug 29, 2002)

I agree with the others that you should take her to see a doctor.
I also had a thought: Does she have sensory issues? My sensory-seeker has done some pretty strange things in order to get the sensory-input he needs, including walking in disruptive ways. He also has a hard time telling whether or not he needs to use the bathroom.

If everything checks out, and it's simply manipulative, then I agree with the other recommendations to be more firm and follow up with immediate consequences, such as leaving a fun activity. Make your expectations and consequences clear before you even leave the house, then take her reaction into account when deciding whether the trip is worth the trouble. Parenting is inconvenient. If you want manipulative behaviors to stop, you have to set very clear, strict boundaries.


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## Starflower (Sep 25, 2004)

I hope you get to the bottom of this issue with your DD. I think it's pretty standard to rule out any physical causes with behavioral issues. It sounds like you had an awful experience with that first ortho, so maybe checking with an ND or a doc you felt you could trust (the second opinion doctor maybe?) would be a place to start just to rule anything out.

But, if there is no physical cause and she's doing it for attention, is it possible she just may need more of your undivided attention right now? My DD is extremely demanding and when she was 4 and feeling needy for attention, she would deliberately pee on the floor. This certainly got my attention, and it's not like she was being ignored, but I was distracted until I heard the tell-tale sound of liquid being poured out on to hard wood and there she was with no pants on peeing underneath our dining table.

She hasn't done this in a couple of years. I am still learning how to best get along with her while meeting both her needs and my own.

Are you able to maybe slow down life a little right now and give her more undivided attention? Are there changes going on at your house right now?

I know my own DD had increased potty accidents whenever she was stressed out. (She is six now and still has some accidents but we've ruled out any physical causes and the doc says it will clear up on its own.)

I think I would try to give her a period of undivided attention every day. You could try some of the behavior modification ideas other mamas have mentioned, too.

If that didn't work, I'd consult a child psychologist.


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## NiteNicole (May 19, 2003)

Quote:

You could also cajole her to go slower because you are concerned she is going too fast and might fall.
I wish I had thought of this first. It would almost certainly have stopped things from getting to this point.

She took a really long nap after we got home (doesn't usually nap, wore herself out crying in the car, was not tired at all in the theater so that had nothing to do with her incident). Before she got up we decided not to say anything about it and just ignore because that's really all I had, y'know? So she walked down the hall, around the house, still slow as Christmas but no limp. Decided to kind of test this and went to my moms. I helped her into her shoes and started for the car. I didn't hold her hand, I didn't remind her to walk faster, I just walked for the car, opened the doors, and mostly acted like I had no idea she was taking her time. No limp.

Got to my mom's, parked far away (long driveway) and walked all the way up to the house, no limp, no falling. Nothing of the kind all evening. Still sloooooow and dawdling so I said, "Ok, you need to walk faster, it's getting chilly"...limp limp limp. "Hold my hand, come on, we need to go" flop.

So I think it's just her control thing. The bathroom thing has been fine. She's not said anything about pain or anything hurting.

My husband and I have talked about it, talked about all input here, and talked about it some more. For now, we're going to ignore it. I'm not going to take her on errands where I need to move quickly and in parking lots, she's going in a cart and she can get out in the store if appropriate (often he'll take her off to look at more interesting things while I shop from the list, and that can be at her pace).

Obviously if she keeps it up or starts to say it hurts or if it starts to look like somethings going on or if she stops having periods where she's walking just fine - not because she's having fun and distracted but just because she hasn't thought about limping yet - we'll talk to her ped and go back to the ortho we like. Until then, I'm going to try to ignore it. It's really hard. It's frustrating. I am not a dawdler.

She gets a lot of my attention. Nothing new going on at our house or in our family. I am a SAHM, my husband works from home, she's the only local grandchild so she gets lots of grandparent and aunt and uncle attention. She's ALWAYS with me so it's not like something could happen that I don't know about. She's always within earshot. For her to spend about an hour with my mom like she did this morning is REALLY rare. I just like having her with me and she's been so good with things like shopping and running errands. She is never the kid in the store having a fit, she's usually just looking at stuff and chatting away. For the most part, she's just so easy that when something like this comes along, I have no idea what to do.

Thanks again for all the input. I'm reading and rereading. I have not totally written off seeing her ped and if/when I do I will certainly update.


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## lolar2 (Nov 8, 2005)

Just wanted to pop in and say that we put my 2 1/2 year-old, who weighs over 40 pounds (he is tall and muscular), in an umbrella stroller; and I often see even very old-looking kids, like 5 years old, in jogging strollers at places like the zoo. In case that info is useful to you. Also I put DS in an Ergo on my back-- yeah, he's heavy, but in the Ergo he feels like 20-25 pounds, not 42 pounds.


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## pigpokey (Feb 23, 2006)

As for the bathroom, when you're out in public I just wouldn't leave the bathroom. I'd tell her this ahead of time -- if she asks you to go, you are staying until she GOES. So you both stay there until she figures out to go to the bathroom. And alternatively she learns not to ask you to take her until she really needs to go.

I'm not saying you shouldn't take her to the doctor. I've taken mine when they've gone through difficult stages, just to be sure. But it sounds to me like she's in full blown "3.5".

I have also tried to ignore things, or not make a big deal about things over the years and while I may not remember the successes, I do remember the failures and they are looming large. In my experience, annoying behavior phases just seem to escalate to intolerable levels in this age group if they aren't consequenced. I have thought, well I won't react, I'll figure out what they're needing, I'll just love them through this and we'll go on with our nice day. BUZZZZZZZZZZZZZ mistake. What they need is a limit to their behavior WHILE fixing their problem. They really don't like themselves when they're hurting their family members but don't know how to stop it themselves, so it can become a vicious cycle of bad feelings breeding bad feelings. Make her stop! It's really the kindest thing. My kids are 4.7 and almost 6 so I am not too far removed from your daughter's age.


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## rainbowmoon (Oct 17, 2003)

Personally I would tell her you are postponing ALL fun things until she can walk on her own and without the fake limp and not ask to go to the bathroom 100 times. I know that's not what you want to hear but it's what will give you the least grief and probably work pretty effectively as well. I had to do this when my DS was 3yo. It wasn't fun but it worked pretty well. He knows I mean business anyway. He also has sensory issues too so maybe you should look into that a little. I would also probably go to the pediactric orthopedic specialist (I saw one my whole childhood so it's not a huge deal fro me) again too to rule anything out.

ETA- I just read your update. I have to say I am not so sure ignoring it is going to be the answer (as it sounds like she is wanting the attention) but I hope it works for you! Good luck!


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## purslaine (Feb 20, 2006)

Pigpokey - I have had the opposite experience.

When my son was around 3 his siter was born. My previously potty trained child started having lots of accidents. Yeah, I know why - his sister ws born - but it did not make it any easier.....

After engaging in a power struggle for months (including Dh -who thought we would be "regressing" if we put him in diaprs again) I put my foot down. I said this was not working, and he could go in diapers again until he forgot we ever had a power strugle - and then, when the time was right, we (or he) would initiate retraining. He was out of diapers 3 weeks later - on his own accord.

Now - I am not saying your way is wrong, per se. But waiting for them to stop this behaviour on their own if you can do it in a relaxed way is not wrong either. Different things work for different families, kids and situations.

OP - when she dawdles - have you tried racing her to get her moving? I often race my 6 yr old dawdler - she likes the competition, and I just want to move the show along, lol.


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## Bug-a-Boo's Mama (Jan 15, 2008)

Quote:


Originally Posted by *Dandelionkid* 
Bring a book with you (for yourself). Sit down at the first sign of a limp and tell her you'll start going again when she is ready to move. Read your book. Disengage every time.

Great idea!

I had really liked the PP suggestion of one warning and then leaving. Since that isn't something you will do, I think the above is great. She is moving too slow, falling, etc. find a bench or spot in the shade or out of the way and just sit down. Sit there as long as needed. You don't need to mention the limp/falling as being the problem, but you could say that she is obviously very tired since she is walking slow and falling down so you guys are going to sit for a while so she can rest. And do it. And do it each time she starts slow walking.

I'd have already brought the stroller back out also!

And my son is probably about your DD's age and I agree with the no concept of time.

Oh and with the potty thing, start re-doing the every time we get somewhere you must go pee or try to pee thing again. Oh and put a potty chair in your car so there is no issue of all the sudden I have to pee NOW. All you will have to do is pull over and let her go. Also comes in handy at parks that don't have bathrooms







.


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## NiteNicole (May 19, 2003)

Thanks again for the input. Just having so many different ideas makes me feel better. I was well and truly just at a loss less than 24 hours ago.

Quote:

OP - when she dawdles - have you tried racing her to get her moving?
This worked when she first started all her slow walking but she caught on pretty quickly that I was trying speed her up and now she won't race anymore. She's a smart one.

She's had a few attention and reaction seeking behaviors in the past (usually something she'll try for a week or two and then it's over, and these have all been pretty spaced out, not one after another) and all of those have been solved by ignoring them and making everyone else ignore them, too. At one point she was putting her hands in her mouth to make herself gag in the carseat. This was a LONG time ago. She had reflux issues up until about a year and she knew that throwing up made things HAPPEN. She never really made herself throw up, but she would put her hands in her mouth and gag. I finally stopped looking at her or reacting to her when she did it and talked everyone else into doing the same and within a few days she stopped and has never tried again.

She's normally pretty easy going but when she picks a battle she digs in.

As to the potty thing, she hasn't had any issues since yesterday but if she tries the going every five minutes thing again, I'm going to take her once and then leave wherever we are because really what is the point of my being somewhere if I spend the whole time dragging her slow self back and forth to the bathroom?

Thanks so much for all the input. I really hope I can come back and report that she's stopped this...SOON.


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## pigpokey (Feb 23, 2006)

Quote:


Originally Posted by *kathymuggle* 
Pigpokey - I have had the opposite experience.

When my son was around 3 his siter was born. My previously potty trained child started having lots of accidents. Yeah, I know why - his sister ws born - but it did not make it any easier.....

After engaging in a power struggle for months (including Dh -who thought we would be "regressing" if we put him in diaprs again) I put my foot down. I said this was not working, and he could go in diapers again until he forgot we ever had a power strugle - and then, when the time was right, we (or he) would initiate retraining. He was out of diapers 3 weeks later - on his own accord.

But you did consequence him beautifully. You put him back in diapers. He didn't like it so he stopped peeing himself. Right? What in fact didn't work was what you were doing before, which probably included telling him you didn't like him peeing himself.

I myself have had great success with the "pull-up consequence" for pattern daytime accidents in the 4-5 year old set.


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## daisymama12 (Jul 2, 2006)

OP, it'll all work out!!!







s

My son was urinating really frequently (several times an hour) when he was around 5. I took him to the dr. just to make sure everything was ok. It was, & he told me that about Pollakiuria or EDUFS . The child feels a real need to pee really often. Nothing's wrong, and it passes on its own - but the urge they feel is real.

This may not ring true for your DD, but it totally applied to our situation, which did pass on its own.


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## crl (May 9, 2004)

When DS was about 3 1/2 he started complaining that his tummy hurt. He started this immediately after we read Curious George Goes to the Hospital, where George has a tummy ache. So, right, he's pretending. He had no other symptoms and he complained intermittantly, mostly at times he was being asked to do something he did not want to do.

I mentioned it to more than one doctor as he persisted over a course of months. All agreed that he was just pretending.

I finally decided that he had been so persistent about it that I was obligated to pursue it. I hauled him back to the doctor and said, I know we think he's just pretending, but I really need to have any possible physical cause ruled out. We did a shotgun approach of testing.

Turns out he is allergic to milk. And I still feel like crap that we didn't figure it out sooner. I did talk to doctors about it, but I didn't push, you know?

Anyway, I know that you do not think there is any physical cause. And you are the mom, so I defer to you! But I wanted to share our story because I now strongly believe that it is very important to rule-out physical issues even when it seems to all involved that the kid is just pretending.

Catherine


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## LynnS6 (Mar 30, 2005)

Have you read "Kids, Parents & Power Struggles" by Mary Sheedy Kurcinka? It's one of my favorite parenting books (and it's a good general parenting book, despite the title).

I like the solutions that you've come up with. I think they'll work for you. Disengaging from a power struggle is hard.

As for the movie, is there any chance that it was a bit overwhelming for her? Three is pretty young for a movie in a theater, IMO. My kids are very sound sensitive and don't like to be in the theater because it's TOO LOUD. Dd also freaks out with the sound effects or anytime cellos play (i.e. dramatic tension building.) I can see them feeling uncomfortable, and 'needing' to go to the bathroom to escape, even if they couldn't articulate it.

Ds also needs to go to the bathroom a LOT when he's nervous. It's only now that he's 8 that he's beginning to be able to recognize the pattern. We talk a lot about our 'fight or flight' mechanism, and how when we're nervous, our body wants to get rid of all waste so it can run/fight better.

Finally, I'd caution you to still think of her as three, and not 'almost 4'. Our expectations for 4 year olds are different than our expectations of 3 year olds. Even a young 4 year old needs different handling than a 4 1/2 year old. She's young.


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## nextcommercial (Nov 8, 2005)

OK.. I am going to assume that she is faking it. Kids do this, so it's entirely possible that she's liking this attention.

I honestly think I would plan a few really great afternoons for YOU. And, only YOU. For a few reasons... mostly because you SO deserve it, and wouldn't it be wonderful to go out and shop and spend a few hours in the bookstore???? But, also you can say in your most sympathetic voice "I know how hard it is for you to walk, so you get to stay home with Daddy". (make sure daddy is kinda busy with boring stuff)

Then go out and enjoy yourself! Maybe bring her a book home or a small treat.

This will either make her wish she didn't have these walking problems, or make her more obnoxious about it. You'll never know until you try.

BUT, you will have had a wonderful outing all to yourself, and hopefully a new novel to read while you wait for her to outgrow this.

By the way, I am 5 ft 10 inches, and I couldn't carry or drag a 50lb child either. So, I can't imagine how hard this is on your back. It hurts my back just to think about it.


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## Twocoolboys (Mar 10, 2006)

I've got some previous experience with a similar issue. My now 5 yr old ds has had a few behaviors like this. First, he started peeing very frequently, like every five minutes back when he was 4. It went on long enough that I took him to the dr. They tested him for a couple of things, told me everything was fine and sent us home. Then, I made sure not to say anything to him about it at all. He got ZERO attention for it. If we were out and he said he had to pee, I quietly took him to the bathroom without commenting at all. After few days, the behaviour tappered off and was gone.

Then, about 6 months later, he started sighing all the time, every few minutes. I was starting to worry about his breathing, thinking that he was out of breath, or having trouble breathing. He had his 5 year old well-child visit soon after and I asked about it. Again, everything is fine. I, once again, made sure to make NO comments about it what so ever. This one took a bit longer to resolve, but it did in a few weeks.

Finally, about three weeks ago, I got a call from the school saying he wasn't moving his arm. I was not inclined to believe him, but I picked him up from school and made a doctor's app't anyway. I talked to the nurse in the hall, out of his hearing range, and told her a bit of the back story. The doctor came in, moved his elbow and said he had nursemaid's elbow. The doctor popped it back in place. After that, he could move his arm with no problem. It turns out that another kid pulled his arm on the playground. I thought for sure this was another affectation, but it turned out to be real.

I think it never hurts to go to the doctor to rule out any problems, even if you are sure there are none. Once you find out everything is ok, then ignore completely. If you are out and she goes limp, pick her up and put her in a stroller. She's still young enough for a stroller. Carry an umbrella stroller with you. Make no comment to her about it ever. It sounds like she's deeply entrenched in the behavior, so it may take several weeks to resolve.


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## meemee (Mar 30, 2005)

i think its a great idea that pp suggested where you do your own thing without dd. if you can.

i also think this could be anxiety ridden. nothing may be wrong and doctors may not be able to find anything but at that moment your dd might be overwhelmed or stressed out. and yes a sign of my dd being stressed out is frequent urination and tummy aches too. in fact tummy aches are clues for me that something is up. it may be v. miniscule to us but huge for our kids.

yes its unfortunate that because you live so far - that you have to put so much in one day. i think too ur dd is going thru some sort of growth spurt. where things change how they view the world. almost 4 is an age of increased fear esp irrational fears.

i did think of the urine issue too - the poly.... however that is related to anxiety too.

this is extreme behavour. it is beyond manipulation. your dd is pretty smart if she has indeed found a way to get her way. while this very aspect of her personality is making you go bonkers now - it will be the exact thing that will make her successful as an adult in whatever she wants to.


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## NiteNicole (May 19, 2003)

Quote:

Finally, about three weeks ago, I got a call from the school saying he wasn't moving his arm. I was not inclined to believe him, but I picked him up from school and made a doctor's app't anyway. I talked to the nurse in the hall, out of his hearing range, and told her a bit of the back story. The doctor came in, moved his elbow and said he had nursemaid's elbow. The doctor popped it back in place. After that, he could move his arm with no problem. It turns out that another kid pulled his arm on the playground. I thought for sure this was another affectation, but it turned out to be real.
Oh OUCH. I winced reading that.

Quote:

Have you read "Kids, Parents & Power Struggles" by Mary Sheedy Kurcinka? It's one of my favorite parenting books (and it's a good general parenting book, despite the title).
I have to get this because this is our issue...well, this is the root of the very few issues we have.

Quote:

Anyway, I know that you do not think there is any physical cause. And you are the mom, so I defer to you! But I wanted to share our story because I now strongly believe that it is very important to rule-out physical issues even when it seems to all involved that the kid is just pretending.
If she ever complained of pain, I would totally get her to a doctor but she doesn't. She can walk normally and does and now that I'm not walking while holding her hand and trying to hurry her along, she's not falling (aka falling to her knees on purpose).

It's not usual for us to have three days of errands but it's stacked up this way so I've had a lot of time to really look into how she operates. The first mention of "we need to hurry" and she's dragging her feet and hanging back. If no one mentions it, she's still moving at a slow toddler checking-everything-out pace but she's not dragging her feet.

Today we had to find shoes for her Halloween costume. She wants to be Alice in Wonderland and Alice has shiny black shoes (total side note but did you know there are size 10 little girl shoes with small heels? HEELS? Yeah, shocked me, too) and she walked all OVER the store just fine in her Alice shoes.

Quote:

this is extreme behavour. it is beyond manipulation. your dd is pretty smart if she has indeed found a way to get her way.
It's not like she's even trying to get her way so much as she's dead set on setting the pace and will not be hurried.

Quote:

I honestly think I would plan a few really great afternoons for YOU. And, only YOU. For a few reasons... mostly because you SO deserve it, and wouldn't it be wonderful to go out and shop and spend a few hours in the bookstore???? But, also you can say in your most sympathetic voice "I know how hard it is for you to walk, so you get to stay home with Daddy". (make sure daddy is kinda busy with boring stuff)
Wouldn't that be nice. Maybe I can pretend to leave and just go take a nap.

I'm going to have to figure out where we put the stroller. I may have given it away. I can't think where it could be.

Thanks again for all the ideas. I know I'm not responding to every single one but I promise I'm reading (and rereading) them!


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## The4OfUs (May 23, 2005)

FWIW, if you're sure it's not an actual physical problem, when your'e out and about I would agree with the "don't comment on it" idea. I wouldn't ignore her, per se, but the behavior. So if it's going to the bathroom every 5 minutes, I'd do it 2 or 3 times without commenting on it, and then leave and just say something simple like, "we'll have to get home because if having to go to the bathroom so frequently" or something plain like that, then dropping it. Or if you have the stroller and she does the limp noodle thing, I'd not say anything and just put her in the stroller, or, "since you are having trouble walking, you'll need to ride". Basically, I would NOT engage in any discussion about it or any arguing about leaving or being in the stroller. Id' be kind, but firm, but almost bored, like it's not a big deal at all...think 'zen robot mama'.


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## minkin03 (May 28, 2009)

Quote:


Originally Posted by *no5no5* 
Yes, I read it. I would expect to see a progressive limp as a result of a real medical problem. I would expect it less in a faking situation. But let me be perfectly clear: A child who refuses for a week to walk without throwing herself to the ground every few steps, injuring herself in the process, is, IMO, a child who needs professional help, of one kind or another. Even if she is faking. Which, honestly, I think is far from clear.

I agree. While it sounds like she's probably faking it's best to be sure given her medical history. I have an almost 4 yo myself who pulls similar stunts all the time (especially the toilet one which drives me bonkers), just last week it was headaches (no other symptoms) it was hard to tell if she was really suffering from a headache or if she was just milking it for popsicles and movies (she had a stomach bug a few days earlier so I suspected she just wanted to have special treatment again).


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## WinterStar (Apr 2, 2007)

I think sometimes children (and adults too!) simply get stuck in ruts, in patterns of behaviour that they maybe don't even know why they are doing them anymore.

You could try to "shock" your daughter out of her rut.....in a light hearted and fun kind of a way. Sitting down with a book and saying, "ohh, cool, I was hoping for a chance to finish this chapter" is one good idea already mentioned - I would add a few, "oooh, wow, hey, do you want me to read this part out to you, it's amazing!" .....there will be other ways. Have you tried developing your own limp? Or maybe a floppy arm when she *needs* your arms to be working? I don't know, it takes some thought to come up with a good one....but the basic gist of it for me would be to do something that 1) Completely takes her unawares, 2) Is funny, 3) Is FUN and inclusive for her. (it's important that she doesn't feel you are laughing at her)

She'll love the new dynamic, she'll limp like crazy to start with, so you keep having to do this new fun thing _together_, and then she'll let it go. She doesn't want to be doing this, (really, she doesn't!) - so you need to help her to change the energy around it. Do something really shocking, throw her a cheeky look and invite her to join you.


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## Hoopin' Mama (Sep 9, 2004)

Oh man, I am not overflowing in the patience department and that dawdling would drive me out of my head.

People are going to disagree with me here, but here's the first thing that popped into my head after reading your last update:

I would tell her that if she can't walk properly she can't go trick-or-treating. I would not say it a threatening way, just matter-of-fact. We would tell our son that we are very worried that he can't use his legs properly and he has to show us that he can walk properly or we are afraid his legs aren't strong enough to go trick-or-treating in his costume.

Yup, I'm a meanie.

ETA: I would do this assuming it would work, b/c I can't imagine really keeping my child from t-or-t'ing. This is risky though b/c I know we aren't supposed to say things we can't follow through with.


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## lucysmom (Oct 17, 2004)

I want to echo what some PPs a ways back said, that this calls for professional help, whether from a medical doctor or a psychologist. The reason it doesn't sound like attention-getting behavior to me is that, as you've explained, OP, your DD gets a lot of attention from you. That strongly suggests to me that the cause is physical, or some emotional/psychological issue that is NOT about attention. So denying attention wouldn't really seem to be a strategy that is likely to yield improvement.

I strongly support ruling out possible unusual physical explanations. When she isn't limping, often you say she is going slow. Maybe she doesn't identify it as "pain" but just as a periodic inability to walk normally? What if it is something that can occur intermittently (so that the times when she does walk normally don't mean there isn't actually an impediment the other times)?


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## Subhuti (Feb 18, 2005)

Quote:


Originally Posted by *TinyMama* 
Just popping in here.










I can't imagine a healthy kid who could stay in bed all day for more than a day or two. This way, she gets to exert control over you, and *it gives her a way to give up the limp while maintaining her dignity*. I can't see any way for her to just stop if it is a power thing--she's protecting her pride here.


Great suggestion ... so beautiful!

Liz


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## One_Girl (Feb 8, 2008)

I would have done the exact same thing. When my dd was four she was "sick" a lot unless we were going to go get candy or ice cream. She was also a cat a lot but we worked through that. I finally told her that we couldn't leave the house to go do fun things if she was sick and she miraculously recovered and stopped being sick so often. I have also left places because my child was distruptive and melodramatic because she isn't getting her way and I talk to her about why we are leaving. That has only had to happen a few times though and then she got decided that she could be happy with what she does get.
I think you should stick to a rule that fake limping and melodrama is for home only and then reinforce it. You should remind her of the rule before you go somewhere and then immediately leave and remind her why you are leaving if the limp comes and she doesn't stop the limp when reminded of the rule. I bet your dd will quickly decide to leave the limp at home. At the same time though, I think you need to find ways to give your dd more control over her life by giving her more decision making power. She may be trying to control what she can because she doesn't feel like she has a lot of control.

I do have one caution though about sticking to the rule when you are doing something boring. My dd figured out really quickly that we would leave if she had a fit in the store and it sounds like something your dd will probably also figure out. I suggest only leaving to sit in the car and keeping a book in the car. I did this maybe three times with my dd and then I only had to suggest going to the car for a break before she decided she could use self-control even if she was bored.


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## Anastasiya (Jun 13, 2006)

I haven't read all the replies yet but my thought is to ignore it (the behavior, not the child).

When it happens at home, don't even comment on it.
Take her for little walks around the home or the property, and when she decides to fall down or lag behind, pull out your cell phone and act like you're calling and talking to someone about something boring.
If you're out in public, go with someone if possible and when she does this, just ignore what she's doing and start having a conversation with the person you're with - don't walk away of course, but don't look at her, either.

Then when she's back up act as though nothing happened.

And don't ever let her hear you talk to anyone about your frustrations with this, because that just makes her want to do it more - it gets her the attention she wants, even if it's negative.

If it's really a control issue, she can't control you if you don't care about what she's doing, you know?

My two cents....gotta run! And good luck to you! That would drive me up the wall!


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## NiteNicole (May 19, 2003)

So she's been doing it more and more exaggerated over the past few days. I had decided to take her tomorrow and insist on some x rays just to rule out anything. Like an idiot, I googled "three year old" and "limp" and I'm getting things like brain tumors and leukemia.

Oh God. Pray for us. I'll never get to sleep tonight. I think I'm going to have a panic attack. I just woke her up and tried to make her walk down the hall in her sleep to see if she would still do it.

Please pray for us. Pray for my daughter. Tell me this is nothing. I can't breathe. This is my baby.


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## amis2girls (Mar 2, 2005)

OP, maybe you have a popular name, but I seem to remember identifying with you with a thread you posted about your daughter a year or two ago. Maybe it was on sleep? I have an almost 6yo who up until five was wetting her pants regularly. Had her thoroughly thoroughly checked out only to be told if I were a stricter parent it wouldn't have been an issue.







Going back and forth on the 'is there something physically wrong/whoa, I have a serious power struggle happy child' is exhausting. It affects your every day and your being.








Positive thoughts for the appt tomorrow.


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## Ms. B. Sprout (Nov 30, 2006)

, mama


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## hipumpkins (Jul 25, 2003)

Quote:


Originally Posted by *NiteNicole* 
That's a very good point...she knows there's nothing wrong, but maybe having someone else tell her she's fine in front of me may take away her excuse.

I admit I'm a little doctor-shy. When she was born, her hips were a little clicky. Her ped sent us to an ortho who totally took us for a ride. She was fine by six weeks according to the ped but the ortho just kept pushing more and more - up to a body cast and including surgery. Obviously I asked for a second opinion and the second ortho confirmed what we suspected - she was fine. Her hips were ok and someone was actually trying to set my baby up for a body cast and surgery! So now unless there is something really wrong (and knock wood, she's only had one cold and ear infection in her whole life), we do not go to the doctor. Although I promise if I thought there was a chance this was something real or she was hurting, I would take her like yesterday.

I know it probably does sound like something might be wrong, but having watched the progression and her response to our trying to get her to stop, it is a control thing.

I don't know if this could be helpful but I have "clicky" hips and am also pretty pigeon toed. Often my hips can sort of lock making me either limp for a few seconds and at worst I have been known to fall right down. It is just sort of random and I look like an old lady sometimes but then poof it goes away.
However I am also pretty sure that a mom kind of really knows the "faking it" of her child. It's just I was thinking if this had happed to her randomly and she kind of liked the attention it garnered she kept it up.


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## The4OfUs (May 23, 2005)




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## farmkids42morrow (Apr 12, 2009)

This sounds SO much like an issue I had with my second son, only his deal was not limping it was vomiting. Oh yeah, he could do it anytime at the drop of a hat. And he did. Every time we went anywhere. EVERY time. We honestly stopped going out because the kid was a puke machine every time we left the house.

I finally had enough, took him to the doctor and was honest...I've had all of this crap that I can take. Either something is wrong with him or he's doing it on purpose. He then proceeded to puke all over the exam room...at which point the doctor looks at me and says quietly "Oh, he's doing it on purpose." That was the point at which I no longer had any sympathy for him; he was choosing to do this baloney and _it was going to stop_. If he even started to gag, we packed up and left whatever we were doing, wherever we were (and we were in a similar "30 minutes from anything" location as you). I let him know that if he was fine with wrecking our outing by throwing up, then I was fine with wrecking it by leaving. We'd go home, simple explanation "You tried to throw up so we had to come home.", then no further discussion. I don't think I need to tell you that it is no longer a problem. Kids catch on really quick when their little game is up.

Don't allow the fact that the first few times of going somewhere and having to leave will be a major bummer stop you from doing it or it will never stop. (I actually once left behind an entire cart of groceries, but it was worth it because this really works!) Make up your mind to spend the next month solving this problem. Go on outings with the intent to _leave_, not to stay. Don't get upset, just say "Oh you're limping again. We'll have to go home. We can come back when you're ready to walk properly." Then leave. Don't discuss, or over-explain. The fact that you don't appear upset (even though inside you might be) will let her know that you are no longer on the limping bandwagon with her. You may be surprised that instead of being upset, you actually feel empowered (I did) - you're getting your life back a little at a time! Your happiness as a mom is at stake here; don't let this fake limping stuff hold you hostage.


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## annamama (Sep 23, 2005)

Funnily enough, my Mum's friend (at nearly 60 yrs old) has just been told she has hypermobility (the childhood 'clicky hips'). It causes her to stumble, be generally clumsy - trip over her own feet, without any cause or pain.
Hope you get some answers ((hug))


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## NiteNicole (May 19, 2003)

Today was so long. Her ped could take her this morning so we went over. He looked her over, ordered bloodwork and x ray. Both are fine. Tomorrow we're seeing a neurologist. I'm so scared. Even her ped said ok, that's not exactly the same walk she was doing this morning. A few times she got distracted and walked fine, but now she's back with some new limp thing and she's doing it A LOT. I don't know what to think. I'm just so scared. This is my baby.

Pray for us.


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## ecoteat (Mar 3, 2006)

Walk away from Dr. Google. NO good can come of that in a situation like this. At the beginning of this thread you sounded confident that she was doing this on purpose. I know through this discussion and research you've done you are now worried about there being something really wrong, but I think you should go back and read your other posts to reassure yourself that this is probably a behavioral thing. Not that it is easy to deal with that, but don't let yourself worry about what MIGHT be wrong. Bloodtest and X-ray were fine. Since the limp changes sometimes, I'd guess it's not caused by some physiological thing. Breathe. You will help her through this.


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## nextcommercial (Nov 8, 2005)

Quote:


Originally Posted by *NiteNicole* 
Today was so long. Her ped could take her this morning so we went over. He looked her over, ordered bloodwork and x ray. Both are fine. Tomorrow we're seeing a neurologist. I'm so scared. Even her ped said ok, that's not exactly the same walk she was doing this morning. A few times she got distracted and walked fine, but now she's back with some new limp thing and she's doing it A LOT. I don't know what to think. I'm just so scared. This is my baby.

Pray for us.

Well, keep us updated, otherwise, I will worry too. LOL.

I'm betting she's fine though. Although, I do understand what you are feeling. Lukemia was always one of my obsessive fears. (that and her falling from the second story window) We all have these fears and bad thoughts. Relax, it will all be fine.


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## _betsy_ (Jun 29, 2004)

I have a similarly stubborn, power-struggle inducing DD1, who's 3.

I can totally understand what you're saying about her slowing down even MORE when you try in the slightest way to speed her up, and I totally get how infuriating and draining that can be.

I think you know her best. I think it's a good idea to take her to the ped, even if it's just for her to feel like you're listening. Have you thought about taking her to a chiropractor?

I'm wondering if this might be a self-esteem issue, if she is indeed faking it. It seems attention seeking. It seems designed to get the pity/attention of others, as well as to push your buttons. I might work on my own language toward her, building her up about things completely unrelated to the limp issue (ie, not talking about how great she did when she went somewhere without slowing you down, but instead talking about how lovely her smile is and how it really makes you happy to smile with her, and how you love to hear her sing, or what a beautiful drawing she did and it'll go on the fridge for Daddy to see, etc.). I know with my DD1, me trying to hurry things along (especially if I forget and imply that we're late or need to hurry) just makes everything take a gazillion times longer with her. If I know we're late, but don't mention it or push her along more quickly, we can make up time.

I really like the idea that when you're out, and she says she needs to pee, you say something like "OK, and when we et to the bathroom, we're not leaving until you have gone pee."

I also agree that a movie in a theater was likely too much for her. I know there's no way my 3 yo is ready for a movie in a theater.

I wonder how things would go for you if you just slowed down to her limping pace. It would drive me batty because I have no patience for DD1's dawdling, but I wonder, if you spent a day or two intentionally going at her pace, and talking about all you see as you go along about your day, and just generally allowing for a slow 3-year-old pace, if she'd be OK with moving more quickly in a few days.

I'm glad you're taking her to a ped and a neurologist based on the ped's rec., I think it shows her that you think this is a big deal, and if there's a physical basis, you'll all be happy to get it sorted out. Try to ignore Dr. Google (love that!) and don't waste any more time on that, it'll likely just make you even more anxious.


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## Eeyore35 (Aug 2, 2009)

I know how scary it is to think omething might be wrong with your baby.

I will say it's possible for hip issues to NOT show up on x-ray. Ever since I can remember,I've been unable t walk fast,usually,and hated going for walks as a kid. Hated.it. Dawdled,complained non-stop. I know by age 7-8 I was having at least some pain,but I didn't mention it to my mom til I was 9. Then she said I was just lazy. By 11,she finally took me to the dr for hip pain. X-rays were fine. did some physiotherapy. I would b seemingly ok for weeks at a time. Finally,at 14,the pain lasted long enough to see dr. again -xrays were fine,but he said I had ankylosing spondylitis, (I don't.) By age 15,x-rays were showing damage to m y hip joints. I pretty much avoided dr.'s after that. (long story)

After year of pain,I finally went back to the dr. just before I turned 35,for more x-rays. Turns out I have osteorthritis in both hips and my back. No idea why.Obviously,something caused it,some structural anamoly or something I do know I have one leg longer than the other.

I'm really glad you are getting it checked out.


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## ecoteat (Mar 3, 2006)

Quote:


Originally Posted by *_betsy_* 
I wonder how things would go for you if you just slowed down to her limping pace. It would drive me batty because I have no patience for DD1's dawdling, but I wonder, if you spent a day or two intentionally going at her pace, and talking about all you see as you go along about your day, and just generally allowing for a slow 3-year-old pace, if she'd be OK with moving more quickly in a few days.

I love this idea. I think we should ALL do this with our kids sometimes! (Including me...starting, um, when I'm not so busy?







)


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## Hoopin' Mama (Sep 9, 2004)

I hope everything turns out okay and this is truly a simple case of stubborn-child syndrome.
Keep us posted.


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## mamatoablessing (Oct 17, 2005)

s

I know you're scared and having very "worst case scenario" thoughts. I personally think (based on all of your posts) that she's faking. I'm sorry you're having to go through all of this.


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## FreeRangeMama (Nov 22, 2001)

I am glad you are getting her checked out. I don't do doctors, but if my child was doing this I would take them in without hesitation to the chiro just to be sure.

I also wanted to add that so many of the potential reasons for her behaviour that have been described here sound so negative! "manipulative" "attention seeking" "creating a power struggle". She is SO YOUNG! And to describe any child's actions with such negativity really misses the point of WHY children do what they do. It is a form of communication. A way to tell us something that they haven't otherwise been able to put into words. Kids are still very much in the physical realm of development and as such tend to communicate with their bodies as much as with their words (if not more).

Once any physical reason has been ruled out maybe just try to accommodate her. She is doing it for a reason. Maybe if you just go along with it for a while you will get a better sense of why she is doing this. Kids will fake things from time to time. All of mine who are old enough have done this for a day or two. But what you describe seems to indicate that there is more going on here. She either has a physical reason or an emotional one. Either needs to be addressed, but not with punishments or consequences. That will only lead her to try to express her need in another way, and probably in one that is even less desirable.

Good luck, and I will be sending out good vibes that there isn't a physical reason for this! Sorry you are going through such worry Mama


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## Starflower (Sep 25, 2004)

I hope everything goes well at the neurology appointment. At least you will be able to rule anything physical out. If there are no physical causes found, then you'll be able to deal with it as a behavioral issue without wondering in the back of your mind if you should have checked out more.

And good advice, to stay away from Dr. Google.


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## NiteNicole (May 19, 2003)

Please continue to pray for us. I don't know how I'm going to make it till her appointment this afternoon. I'm so scared. Please pray it's just nothing. I don't care if she fake limps for the rest of her life, I just want her to be ok.


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## NiteNicole (May 19, 2003)

I know I've become obsessive but, who wouldn't.

She was just outside playing with the neighbor's new puppy and she did fine peddling her bike, up and down off the driveway, she walks backwards fine and shifts her weight from leg to leg. Sometimes she'd walk fine for a few steps and then start to limp. I so just want this to be fake and a behavior problem.


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## pigpokey (Feb 23, 2006)

I hope to hear good news.


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## Starflower (Sep 25, 2004)

Just checking in.







Hang in there.


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## l_olive (Jan 18, 2005)

Did you see the neurologist today?


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## NiteNicole (May 19, 2003)

Thanks for thinking of us.

For about the first half hour, the doctor was totally with us on it being a behavior thing. I mean, TOTALLY. But then when she (the doc) couldn't bribe or distract S (my daughter) and get her to walk properly or run, she decided it couldn't be because no three year old could keep it up for that long. I disagree, mine totally could and distraction and bribes have NEVER worked with her on anything at any age, ever.

For now, she's going to have an MRI (with sedation, which I'm going to ask more about tomorrow - but I think that's best as S is TERRIFIED of loud noises lately) and a few more rounds of blood tests (which I'm hoping they can do while she's sedated) and the doctor has prescribed meds for something called dystonia or distonia. I'm trying really hard not to google. If it's that, she should respond to the meds pretty quickly.

Please keep your prayers coming. Thank you so much for hanging in with us.


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## Starflower (Sep 25, 2004)

Wow, I'm sorry to hear that this is becoming such an ordeal for you and your DD. Good luck with the MRI. I hope they can get the blood samples while she's sleeping. That would be one less thing to worry about.

I hope you find some answers soon and that everything works out well for your DD. You are doing a great job in a tough situation. Hang in there.

You, your DD and your family are in my thoughts and prayers.

Hugs,
Starflower


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## Smokering (Sep 5, 2007)

Don't panic! I'm in the "she's faking" camp. DD's too young for me to be in this forum, but I came across your post and had to offer sympathy. DD at 18 months has just starting the deliberately slow walking thing, and it drives me BATTY! My goodness, does it drive me batty. Our pram broke and I have no car, so every errands-trip with DD (and the nearest block of shops is a 15-minute walk away) means we walk. And on the way home she'll drag her feet and go limp at the knees if I hold her hand, and walk the wrong way, looking at me sideways, and sit down and refuse to budge. Which, as summer gets closer, gets less fun - I sunburn easily and our walk home crosses a huge open park, so waiting for her to get a move on in the sweltering heat is NOT my idea of a good time! Sometimes I can carry her, but even at 18 months she's heavy to carry for too long, especially when my other arms are full of groceries. And because she's afraid I'll put her down, she digs her heels into me and sort of clings in this weird, painful, annoying way.

Sometimes when my arms are killing me I put her down, hold her hand firmly and make her walk; if she goes limp-kneed I just lift my arm so she can't fall down and then put her down on the ground. She walks much faster that way, but she wails and tries to wriggle her hand out of mine and I feel like a terrible mother. (Plus, I don't think that's physically possible to do with a child your DD's size - not with my biceps, anyway!)

In DD's case I know it's partly because she's tired, but just for the record it's ALWAYS needs-a-nap sleepy, not walked-too-much exhausted (as in, it affects her behavior, not her legs!). In a "fun" situation the kid just will not tire and will walk for miles and miles. But there's something about walking home - I suspect, like your DD, that she's made a habit of it. It's _really_ annoying!

So I sympathise... I really do...


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## kamane18 (Aug 28, 2008)

Just wanted to send along more









Thinking of you...


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## NiteNicole (May 19, 2003)

Quote:

on the way home she'll drag her feet and go limp at the knees if I hold her hand,
That's it, that's how it started.

And the more attention we pay it, the more we try to correct it, the worse it's gotten. This is exactly how it went with trying to get her to take meds, toilet learn, etc. We still rock her to sleep because she just flat refuses to go to sleep any other way.

Obviously, I just really want it to be a habit and a control/attention thing. That would be, I think now that we know how seriously she's taking it, fairly easy to fix. We'll just slow down and dust off the stroller and stop talking about it. I don't know about this dystonia thing. I know the woman who was on the news recently, the flu shot thing, she can walk backwards and jog ok but can't walk or speak well anymore? She has dystonia. THAT is scary.

Thanks for all your thoughts and prayers, it means a lot to me. I'm still hoping for a good healthy outcome.


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## NiteNicole (May 19, 2003)

And we've just gotten back from the doc and she has tonsillitis. She was riding a bike in the store (we're hoping to get her one for Christmas and trying out heights) with both legs just fine. She's asking to be carried a lot, but she feels bad. Her walking is still slow but NOTHING like the pronounced limp/hobble she's been doing for the doctors. At times, she's just slow. So I don't know.

I have to call the neurologist tomorrow and make sure she can still start the meds for the dystonia if she's also on meds for the tonsillitis and if we're still on for the MRI next Tuesday.

Part of me kind of thinks she's too sick and tired to keep up the limp, and then sometimes I think if she really isn't faking, how awful it must be to have lost control like that. Althought it hasn't made her frustrated or changed her mood at all.

Thanks for continuing to think of us. I hate to be selfish but still appreciate all the prayers sent our way.


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## village idiot (Feb 19, 2003)

I just wanted to give you a hug.









I will keep you and your dd in my thoughts.

Please keep us updated.


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## skueppers (Mar 30, 2005)

I just wanted to offer you a







.

I hope nothing turns up in the MRI.

Just to give you my own experience, I took my daughter to the doctor twice in the 3.5-4 age range for problems I thought were behavioral.

The first time, it was about pee accidents (when she'd been out of diapers for a long time); I wanted to make sure she didn't have a UTI or something. Nope, turned out she was just experimenting with how long she could go without using the toilet. Anyway, a visit to the doctor cleared that up for a while -- I think having me take it so seriously did the trick for her. She did go back to her experimenting later, but never to the same degree.

The second time, she'd fallen down and hurt her knee, and insisted that she absolutely couldn't walk even the tiniest amount. The doctor thought it was likely that she could walk but just chose not to; however, we decided to take it seriously in case there was something wrong. I actually had to go out and buy a stroller, because I had no idea how long it would take her leg to "heal," and it was obvious that putting her in the Ergo was genuinely painful so I couldn't reasonably carry her. On the up side, I have gotten some use out of the stroller later on, both for her and her younger brother, so it wasn't a complete waste of money.

So anyway, I know from personal experience how frustrating this kind of thing can be!


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## NiteNicole (May 19, 2003)

Village Idiot, thanks for thinking of us. And also for your awesome name, which made me snort.

Quote:

So anyway, I know from personal experience how frustrating this kind of thing can be!
I'm sort of torn between being totally frustrated that she MIGHT just be worrying us for nothing and totally impressed that she is so tenacious. She did not get that from me. I'm not proud of it, but I tend to be someone who ignores my needs and gives up easily - I would never have the nerve to say ok, you won't slow down and work with me, I'll MAKE you slow down. And we have. If that's what she's after, she got her message across, finally, loud and clear.

I can not carry her anymore, after three days of carrying her a lot. My back is just not responding well. In stores, she's riding in carts or my husband is carrying her. In the house, I just tell her she needs to walk and I walk with her. No limp, very little bobble sometimes. We're not mentioning limp or leg or walk or anything, just doing it.

After we hear from neuro to make sure she can start the meds for Dystonia while she's on the meds for tonsillitis, we'll start that and see what happens. I will update.

Thanks again.


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## ecoteat (Mar 3, 2006)

Wait--I'm confused. Was she diagnosed with dystonia? Or is this still just a maybe? I don't understand why there is talk of medication for something that is still unknown and still sounds like a behavioral issue. Is it more of a trial-and-error thing to diagnose a potential physiological problem?

I hope you find answers soon!


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## NiteNicole (May 19, 2003)

There is no test for dystonia (and there are different types, if she has it, as I understand it would be better for her if it's the type that responds to this med) so one of the ways to find out if that's what she has is to try the medication. Normally, I'd be a bit resistant to medicating for something we don't KNOW she has, but apparently this is part of the process.

I thought of something else last night, but I'm not sure if or how it's related. She's done this thing since she was a baby - we call it "scrubbing her knees" and I think essentially she's somewhat masturbating. I think it started as soothing herself with repetitive movement (given how young she was when she started doing it, and how much diaper she had on) and kind of evolved. She's gone through phases of doing it A LOT. She gets on her belly and pulls her knees up, then pushes down and out. She has not done this AT ALL since the limp started. Is it too much to ask that this might be some kind of repetitive injury? Is this worth calling the doctor about? Can you hear how desperate I am?


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## The4OfUs (May 23, 2005)

I think you should mention anything that you think might be pertinent.


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## Starflower (Sep 25, 2004)

I would probably mention it to the docs. Even if it did not cause an injury, if she has pain/discomfort in her legs or hips or someplace, she may have stopped doing it because it adds to her discomfort. Or it could be completely unrelated. I think the more information the doctors have, the better able they will be to make an accurate diagnosis.


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## village idiot (Feb 19, 2003)

Quote:


Originally Posted by *NiteNicole* 
Village Idiot, thanks for thinking of us. And also for your awesome name, which made me snort.


Awe, you're welcome! Thank you for the compliment on my name.









And I love it when I make people snort.









And I know what it is like to give meds to your child to see if that rules out the problem.

When do you expect to hear back from the neuro? And when is the MRI scheduled?


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## ecoteat (Mar 3, 2006)

Is it possible that whatevery sensory need the knee scrubbing was fulfilling is now being covered by the walking problem?

I've been thinking about you and your dd. Any news? Has she tried the meds?


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## NiteNicole (May 19, 2003)

So she's been on the meds for one week and she's pretty much stopped any limping in the past two days - which sounds like she's responding to the meds BUT after we left the neuro (it was a late appointment in another town so my husband carried her to the car, then carried her in the house, she used the bathroom and then he carried her to bed) we never saw the big exaggerated limp again. It was kind of like she was just favoring her right knee.

On Wednesday we found out she had tonsillitis and on Thursday we started the meds for dystonia. We didn't talk to her about her walking at all. We walked slowly with her or put her in a shopping cart if we had to go into stores or my husband carried her. NEVER mentioned the leg, never hurried her. No serious limping at all, certainly no big bobbling and falling down.

She would sometimes step down on her right knee, coming down steps or something, and it was like it would give a little. Now she doesn't have any of that.

So I'm wondering if she didn't have a knee problem all along, and part of the big limping and exaggerating was behavioral and now her knee problem has gotten better.

I don't know. I want to be sure I present this to the nuro as clearly as possible. I don't want them to miss anything if she has some chronic issue, but I also don't want her subjected to unnecessary tests (an MRI with sedation is pretty scary to me) or medication if it's just a coincidence that she's gotten better around the same time she started the meds.

I think she started out trying to get us to slow down and in all the throwing herself on the floor combined with her being REALLY REALLY HARD on her knees, she actually hurt herself. Can it be just coincidence that as soon as we started totally ignoring it, it started to get better and has gone away? She still seems to occasionaly come down too hard on that knee (but she's nearly four and doing things like trying to jump and touch her toes - pike and straddle, for all you former cheerleaders and gymnasts and she's almost doing it) and favor it a bit, but it's NOTHING like the big exaggerated full body thing she was doing for both doctors (and in both cases, it got more and more pronounced the more they asked her to walk and the more people they brought in to watch).

The MRI is still on but we have to reschedule after the tonsillitis totally clears. She hasn't had fever in days, but she's still very congested and doinga bit more coughing today than she has in the last few days.

Thansk for thinking of us. Please keep sending us your good thoughts and prayers.


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## ~Boudicca~ (Sep 7, 2005)

Wow, mama I just found this thread, what a rollercoaster.








I hope you find an answer to what's going on and I hope things get better soon.


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## titania8 (Feb 15, 2007)

just came on to check in on your situation. i have been lurking, but wanted to lend my support.


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## NiteNicole (May 19, 2003)

Thanks!

It's so nice to be able to talk about it. I keep going over and over the whole thing in my head and trying to make sure I'm seeing everything as it really as and remembering it all correctly. And also, I just need to talk through it.


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## Starflower (Sep 25, 2004)

Thanks for the update. I hope her tonsilitis resolves quickly and you can get the answers you are seeking. Hang in there.


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## mistymama (Oct 12, 2004)

Just found this thread - wow, so many ups and downs. I'm thinking of you and hope you guys get some answers.









I do want to add that I've got hip problems myself. There are days where I walk fine, esp if I'm distracted. But sometimes if I have the time to think about it, they hurt more. There are also days where I'm fine and then all of a sudden they hurt, BAD. Sometimes I limp - sometimes I go months without any pain at all. It's very, very frustrating - and thus far, 3 orthos have not been able to tell me exactly what is wrong, so I live with it.

Just wanted to share my experience in case your dd really does have hip problems - in the course of one day I can go from pain, to fine, back to pain and limping several times.


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## crl (May 9, 2004)

I just wanted to suggest that you might keep a log, especially since you mention that you are trying to remember things correctly. A log of when she's walking normally, when she's limping and what else is going on at the time may help you or the doctors find a pattern--whether it's a medical/physical pattern or a behavioral pattern.

I hope everything gets resolved for you all!

Catherine


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## Surfacing (Jul 19, 2005)

Thinking of you and hoping you and your daughter find resolution.


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## NiteNicole (May 19, 2003)

An update with very little new info -

She had bloodwork again last week and we're seeing the neurologist tomorrow. She's been on the meds for a month. I'm trying to keep a timeline so I can be very clear when we speak to the doctor.

Just wanted to bump this while I'm thinking about it so I can find it easily tomorrow to update.

Thanks again for all the support.


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## ecoteat (Mar 3, 2006)

So is there is difference with the meds? I've been thinking about your daughter and wondering if you were going to update. After dealing with the problem for this long is your sense that it's more behavioral or physiological now?


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## GradysMom (Jan 7, 2007)

i used to live out in the country as a kid and i get what you are saying about convienience... but I think you need to look at this as the serious problem it is for you and make it THE focus right now. atleast once a week try the outing suggestion... your happiness depends opn getting this situation to change soon.

other days of the week focus on being out with her near the house limping with her... try to get it down... play along...
maybe one day at something exciting do a perfect mimic of her and hold ger up... make it hard for her to get from the car to the playground. maybe then ask for a special hug to "fix" you.

also i love the idea of gpong to the drs


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## mamatoablessing (Oct 17, 2005)

Good luck. I think about you often and check back on this thread regularly for updates. Have you noticed any change in her limp since she's been on the meds? Is she still exhibiting the same behaviors and symptoms? What is your gut telling you?


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## NiteNicole (May 19, 2003)

Quote:


Originally Posted by *ecoteat* 
So is there is difference with the meds? I've been thinking about your daughter and wondering if you were going to update. After dealing with the problem for this long is your sense that it's more behavioral or physiological now?

There is a difference from a month ago, I'm not sold on the meds.

We have not talked about her limping or walking slowly _in front of her_ since we left the last neuro appt about a month ago and we've NEVER seen the serious limping/flailing again. Not even one time. In fact, if you weren't looking for it, you probably wouldn't have noticed anything on the mornings of any of the doc appts or the next day.

My thought is that she had a real problem - she does clearly turn her right foot in a bit when she walks sometimes (when she is tired, mostly, although it is not as profound as some kids I've seen, or even my SIL who does it quite a lot) - and somehow hurt her knee and that was slowing her down. When I would try to speed her up, she would throw herself on her knees. I suspect that between that, this thing she does with repeptitive knee scrubbing, and just how HARD she is on her knees (she hasn't fallen, done knee scrubbing, or done her "trick" of juping up and landing on her knees - we just made her stop - since the last doc appt as well), she actually hurt herself. So there was some actual limping and some hamming it up.

The amount of flailing increased with the amount of attention she was getting. As soon as we stopped talking about it, it stopped happening...even before she took the meds. I suspect that whatever was wrong with her knee has just had time to heal. As she also had tonsillitis the day after we saw the neuro, we stayed home for a week or so and kind of kept things low key.

I imagine that when I say I'm not sure it's the meds, the doctor is going to suggest we take her off of them for a week or so and see what happens. We should have our answer then. There's also still an MRI coming up.

mamatoablessing, I should have an update tomorrow. I had the date wrong, the appt is tomorrow afternoon. I double checked after I posted, thank goodness.

Grady's mom, thanks for your thoughts. We've now seen her ped and a neurologist and we're going back to the neuro tomorrow. She's had two rounds of blood work, x rays, and an MRI is scheduled. A tentative diagnosis is something called "dystonia" and we're still investigating that.

I hope I have good news and no bad news tomorrow. I still get a little breathelss thinking about it. She seems totally unaffected. She's riding her bike, juping on her (mini, indoor) trampoline, walking round the block with me, etc. She still can't quite work out a run but she's stopped having incidences of her knee giving out, she's stopped falling. So she IS getting better but it's hard for me to see it as the meds as the problem appears to be her foot turning in and not a muscle problem? But we'll keep working on it.

Keep thinking of us, keep us in your prayers.


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## NiteNicole (May 19, 2003)

We met with the neurologist today. All of the bloodwork is fine and the neuro says this rules out "the really scary stuff." She still thinks dystonia but as there is no test for it, she's been very open that she can't say for certain and the best we can do is try different things and see what happens. There is still the MRI in Dec.

We can take her off the meds or increase them. I don't want to take her off till after the holidays. IF she should worsen, I don't want to spend another month trying to get her back to where she is now. We have some fun things planned, I want her to enjoy them.

I'm just so worried. Dystonia can be very mild, affecting only a small area (a group of leg muscles, even a finger) or very debiliting. It can be painful, or not. It can be totally or partially controlled with meds, or totally unaffected - and there is very little to do for that kind. I am terrified. I just want her to be whole and healthy. She's so perfect and sweet and funny, I don't want her to have something huge to deal with, I don't want people to see her as the kid that walks funny - or worse. I don't want this to define her quality of life.

I don't know what to hope for - there are so many more horrible things children suffer with, shouldn't I just be relieved it's not worse? I want it to be nothing, but if it must be something I hope it's confined to a small area, doesn't progress, responds to meds but...why must it be anything? Why can't she just be healthy?

I just want her to be healthy. I want her to be ok. Please continue to pray for us.

I keep wondering, must it be neurological? It's how she walks. Lots of people walk with their toes turned in or a weird way of placing their feet. Whatever happened to corrective shoes? Why aren't we looking at her knee? At her foot? I know I am desperate and I know it shows but I just want her to be alright.


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## crl (May 9, 2004)




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## honeybunmom (Jan 11, 2007)

Quote:


Originally Posted by *NiteNicole* 
I keep wondering, must it be neurological? It's how she walks. Lots of people walk with their toes turned in or a weird way of placing their feet. Whatever happened to corrective shoes? Why aren't we looking at her knee? At her foot? I know I am desperate and I know it shows but I just want her to be alright.

So sorry you're going through this, mama!

When I was in high school, I had a gait analysis done by a podiatrist. Way back then, it entailed some kind of battery/computer pack being strapped to one's waist with electrodes coming out of it that were placed strategically on one's legs and feet to record how the body took the pressure with every step and how every step was made. After that, I had casts of my feet made and orthotics developed from those to insert in my shoes to correct the problems with my gait that were causing my knee pain. All of this so I could keep running track!

So, that's another path you could explore.

Good luck!


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## Starflower (Sep 25, 2004)

More







to you. Thanks for keeping us updated. I hope you have some definitely answers and resolution soon.


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## mistymama (Oct 12, 2004)

Thanks for the update, I've been thinking about you. Hope you get some answers and help for your LO soon.


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## pianojazzgirl (Apr 6, 2006)

I just saw this thread for the first time today and followed along all 6 pages. Wow. What an ordeal for you guys. Seems to me like your instinct of having someone (Not sure the right specialist - I guess a podiatrist?) check her feet, legs etc is a good one. Or even seeing a chiropractor (I have a wonderful chiro who I really trust who I would definitely be seeing in this situation). I will be following along for future updates. I hope this ends up being something very minor, hopefully an injury which just needs to heal completely and will never reoccur.


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## NiteNicole (May 19, 2003)

Quote:

hopefully an injury which just needs to heal completely and will never reoccur.
I just don't understand why neither her ped nor the neuro will consider this. It's her FOOT. It's turning IN. WHY must it be something neurological? Can't we even LOOK at her foot or knee? And honestly, what they say that made them think "dystonia" is NOT how she was walking even fifteen minutes before either appointment. She was walking a little slow and with a bit of in turning, but not with all the great "spastic" type thing they were seeing and I feel like when I tell them that they're not REALLY hearing it. I say, she doesn't do this all the time, this is getting worse the more you pay attention to it and they hear "sometimes she's ok, sometimes she's not" and that's not the whole story.

At this point, I will wait till after the MRI and either stop or increase the meds and then if I'm still not satisfied, I'm going to see someone else. I need to be sure. I need someone to at least CONSIDER the possibility that this is a minor one shot thing they can fix.

My dad has a coworker with a little girl around the same age. She also developed some kind of knee problem. They tried a billion different things, did all kinds of tests, and finally looked at the knee - it was in patient arthroscopic knee surgery and the child is FINE. This was only after they scared them all half to death with every kind of major scary childhood issue she could possibly have. I am going to ask them for the name of whatever doctor at least finally considered her knee.

I'm not saying I am 100% set on it being a minor issue, I know it might not be, but can we at least even CONSIDER that?


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## pianojazzgirl (Apr 6, 2006)

Ya know, I think you should take her to a different ped for a 2nd opinion. Why not? Or just straight to a podiatrist (is that the right specialist?). By all means have the MRI, and continue the dystonia medication, but really, what do you have to lose by seeking another opinion? It certainly does seem weird to me to completely disregard the fact that she walks with one foot turned in, and how that must affect her knee and hip on that side.

Don't discount chiropractic care either. At the very least a chiro will see the validity of your concerns - their whole thing is all about how different parts of the body affect others, iykwim. A good chiro can treat what's going on if he's able, or will refer to another specialist if necessary.

ETA just read your post again and realized you've already decided to take her for a 2nd opinion, oops. I guess then what I mean to say is "I agree with you!".







And the thing about the chiro still stands.


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## NiteNicole (May 19, 2003)

She has seen a pediatric ortho (for something else - hip dysplasia when she was a newborn) before and we really liked him. I have just realized that I can probably just call and make an appointment without waiting for a referral. I'm willing to see a podiatrist as well.

I'm a little worried about a chiro as if this IS dystonia, a lot of the info warns against chiropractic help - I'm not really at the bottom of "why" yet, and I'll keep digging.


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## Surfacing (Jul 19, 2005)

Quote:


Originally Posted by *NiteNicole* 
My dad has a coworker with a little girl around the same age. She also developed some kind of knee problem. They tried a billion different things, did all kinds of tests, and finally looked at the knee - it was in patient arthroscopic knee surgery and the child is FINE. This was only after they scared them all half to death with every kind of major scary childhood issue she could possibly have. I am going to ask them for the name of whatever doctor at least finally considered her knee.

I'm not saying I am 100% set on it being a minor issue, I know it might not be, but can we at least even CONSIDER that?









I think it's wise to listen to your gut feeling and get that possibility checked out.


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## lily sophia's mom (Feb 16, 2007)

Can I ask what medication she's taking for dystonia? Have they considered physical therapy instead?

Hugs to you...
Gina


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## NiteNicole (May 19, 2003)

Senimet.

It can progress quite a bit. Physical therapy might help, but at this point I think the idea is to stop it getting worse before going to therapy.

Her ped called us early this morning before hours when he had more time to talk. He said if we want her to see an ortho, he'll refer us. At first I wanted to wait till after the MRI so we can have that when we go but now I don't think I can wait. I want to see someone as soon as possible.

I'm just a wreck about this. She is so perfect and funny and beautiful and bright - I don't mean smart, I mean she just shines. I can't stand thinking that she could end up with something that will change her life. I know it happens to other people's children all the time and I know my child isn't any more "special" (except to me) and deserving of good health than any of those kids, but I just hate this. I have seen video of other children with very advanced and severe dystonia and it just breaks my heart.

I try to keep reminding myself that right now, she's just fine. She can't run, FINE, she can't run. I can live with that. I can live with a bit of a funny walk when she's tired. I just can't think of her getting worse.


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## 2mama (Feb 3, 2006)

Wow what a time for all of you.. I second the ortho consult.. It can not hurt esp if you have already seen one years ago.. Then you can at least rest assured that you are on the right path with the dystonia if the ortho gived her a clean slate..

hugs and more hugs mama..

Also have you seen anyone about the repeatative scrubbing? Was she on meds prior to the dystonia??


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## NiteNicole (May 19, 2003)

We never saw anyone about the scrubbing thing because it was never much of an issue. She did it when she was tired, you know? She's stopped it now and doesn't seem to miss it, so I'm not that worried. She hasn't really replaced it with anything either.

The only meds she's ever been on - she was on Prevacid for six or seven months till she outgrew her reflux. She was on Zantac for about a week. She was also on Reglan (Raglan?) for about - gosh, I don't even know if I gave it to her for more than a day or two. It has been known to cause a dystonic reaction but not three years later.


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## The4OfUs (May 23, 2005)

I would definitely be pushing for a second opinion foot/knee/hip orthopedic eval, I'm finding it hard to beleive they're not looking into mechanical issues more, too. If there's intoeing and it's a gait mechanism that's the problem I bet there's a lot more options for helping it along.


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## titania8 (Feb 15, 2007)

been thinking about you and finally got a chance to check this thread.







i'm sorry you are in this limbo of not knowing- that is always so so hard! but please, don't look at videos or do too much googling- it will only freak you out more!


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## NiteNicole (May 19, 2003)

She now has a sore throat, runny nose, a bit of a cough, and a fever. I don't know if I should take her to the doctor or not. On the one hand, she doesn't seem that miserable or anything and it's probably just a little something (since just last night the doctor said her ears were fine and her throat was just a little red) that will clear itself out. At the same time, should she get something that's tough to clear up they will have to move this MRI again. I guess we will wait and see.

The ortho appt is going to take a bit of doing. The first one we saw with her hip dysplasia is out of the question and the second is now mostly specializing in spine issues. We called today and he'll get back to us - either he will see her again because he's already seen her once OR he'll refer us to someone else at Childrens. It takes a few days of faxing things and getting records so it may be after the MRI before we can see whoever it is anyway.


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## Sepia (Oct 7, 2003)

have you taken her to a chiropractor yet?


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## NiteNicole (May 19, 2003)

I have not taken her to a chrio yet (but have one lined up that I'm told is really good with children). Some of what I've read about dystonia specifically warns against chiropractors and children with dystonia. I'll see if I can find it again. I'm open to it as soon as I can find something that says it won't make things worse. I LOVE my chiro and it's his partner that we'd be seeing so...I'm more than willing.

She has been progressively more wobbly since Sunday. She's also been on her feet a LOT, jumping on her little trampoline (indoor with the grab bar), and doing her knee scrubbing thing. I'd say she's as wobbly as she's ever been, but without the kind of exaggerated thing she did with the doctors. She doesn't seem to be hurting and she doesn't seem bothered by it, but it's so hard to watch. I hope that this kind of indicates it's a knee thing?

Still waiting to hear about seeing an ortho. Sometimes I'm so tempted to just find a new ped and start over, see where that leads. I love her ped, I love the neuro, but I'm feeling desperate. When I thought she was getting better it was scary, but seeing her back almost where she started is...yikes.


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## Starflower (Sep 25, 2004)

What a journey you are one.









You're doing great. Your little girl is lucky to have you as her mama.


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## NiteNicole (May 19, 2003)

Thanks. It's just a really hard day. She's tripping a lot. I just read a discription of a dystonia gait that sounds a lot like her. I also read that 90% of the time it starts in the leg, it progresses. I am heartbroken and sad and angry. I can't stop crying. It's just so hard to watch her. She wants to run and she can't. She rode her bike around the block and when she went to get off, she just kind of...I don't know, she needed a lot of help getting across our front yard. If it's a knee problem, I really need to get someone on it SOON because should she be walking on something that's giving her that much trouble? I don't know. I just don't want her to be facing this big life-changing thing. I keep thinking about her four months, running away from me and laughing and how can we be here now? I'm so scared.


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## lolar2 (Nov 8, 2005)

I have waxing and waning mobility impairments. I just wanted to reassure you that in an industrialized country with modern adaptive technology, disability rights protections, and an information-based economy, a mobility limitation does not have to be the tragedy you are concerned about. When I was at my lowest mobility, using a walker and occasionally a wheelchair, I traveled all over England on trains; went from England to Scotland and from England to California on planes; took walking tours, even over rough terrain (my walker had all-terrain wheels like a jogging stroller); and generally lived a normal life. My life now, with some limitations but not enough to need mobility aids, is also pretty normal.


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## pianojazzgirl (Apr 6, 2006)

Hey mama, just wanted to let you know that I've been thinking about you guys. I'm so sorry you're going through this. Sending good thoughts and wishes your way.


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## NiteNicole (May 19, 2003)

Thank you, we will take all the good thoughts and prayer we can get.

Quote:

I have waxing and waning mobility impairments. I just wanted to reassure you that in an industrialized country with modern adaptive technology, disability rights protections, and an information-based economy, a mobility limitation does not have to be the tragedy you are concerned about. When I was at my lowest mobility, using a walker and occasionally a wheelchair, I traveled all over England on trains; went from England to Scotland and from England to California on planes; took walking tours, even over rough terrain (my walker had all-terrain wheels like a jogging stroller); and generally lived a normal life. My life now, with some limitations but not enough to need mobility aids, is also pretty normal.
Lolar, that's certainly what I hope for my daughter - a pretty normal life with some things she can work around. My first hope is that it's just some fixable knee thing but if not that, then something that won't change her life or her plans for herself too much. I know she's only three but she's been counting down till she's old enough to take dance for a long time. I know that's not a tragedy and worse things happen to children all the time but as her mother, that's heartbreaking. Seeing her today, pretty much at her worst, I think ok. I can live with this. This is pretty wobbly but I can live with this. And then I read that it can be progressive and profound and I think it's not about ME living with it, and how hard it will be for her to live with what this could eventually be. And there's nothing to do for this particular thing but react to it, you know? I can't get her better care and stop or cure it. It's so damn scary. I feel like I can't breathe. I feel like I could just go outside and start screaming and never stop but it wouldn't do any good.


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## daisymama12 (Jul 2, 2006)

I'm sorry you're going through this, I wish I had something helpful to ease your worries, but wanted to send you







.

Hopefully it is a mechanical issue with her knees, or an issue that can be stabilized soon.

Thinking of you & your family.


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## DaughterOfKali (Jul 15, 2007)

Hoping you get some answers soon and that she can be successfully treated.


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## NiteNicole (May 19, 2003)

She is just getting worse every day. She's falling a lot this morning. I don't know what to do. I am going to call her ped tomorrow and tell him and see what happens. If nothing happens, we're getting a new ped.


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## crl (May 9, 2004)

I don't have any words of wisdom, I just want to offer you my support.

Catherine


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## daytripper75 (Jul 29, 2003)

Quote:


Originally Posted by *NiteNicole* 
She is just getting worse every day. She's falling a lot this morning. I don't know what to do. I am going to call her ped tomorrow and tell him and see what happens. If nothing happens, we're getting a new ped.

I am so sorry to hear this.







My friend was in a similar situation with her daughter last year and finally ended up just driving her to the best Children's Hospital she could get to and taking her little one into the ER. It took them about 5 hours to get a diagnosis of Juvenile Rheumatoid Arthritis that day. Once they did that everything started to fall into place for them. Before that they had spent at least 3 months running from doctor to doctor trying to get answers.








Hang in there. I hope you can find the answers you need for your precious dd.


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## NiteNicole (May 19, 2003)

I have been thinking of doing exactly that. There is a Children's hospital about an hour away from us and I just want to show up and say, ok, DEAL WITH US. HELP MY CHILD. My perfectly healthy child was fine a few months ago. She hit all her milestones normally, if a little on the early side. She was running and jumping and FINE and now she's falling down when she tries to make a short slow walk to the bathroom. Shouldn't someone HELP HER.

If I take her to the ER, do they have to deal with us or will they just send us home? Will they at least set something up for someone to see us?


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## Surfacing (Jul 19, 2005)

No advice or wisdom, just support.


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## annekh23 (Nov 1, 2008)

Quote:


Originally Posted by *NiteNicole* 
If I take her to the ER, do they have to deal with us or will they just send us home? Will they at least set something up for someone to see us?

It wouldn't be an emergency, so they don't have to treat you, but assuming you have insurance, there is no reason why they wouldn't treat you and once you are through the door, the doctors tend to just treat what they are faced with, which does sometimes mean acting like a primary care doctor. On a couple of occassions I've gone to the ER pretty much just to get pain meds for things that were already being investigated through the usual channels, but doctors seem to like to solve problems and they'll dig deeper, plus at a children's hospital where you might need referrals regardless of your insurance you might get in to the specialists faster.


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## amylahminute (Nov 22, 2008)

I just wanted to offer my support and say that I hope you find a solid direction for this situation soon, mama!


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## pianojazzgirl (Apr 6, 2006)

Honestly, I think you should just take her in. I want you to get the answers you need!







Take her in, tell them that she is much worse today - the worst she has been. Make it sound worse than it is if need be. My GP, cool guy that he is, would totally agree. At one visit recently he phoned the hospital while I sat there - warning me ahead of time that things were not as bad as he was going to make them sound - and pushed to get me in to see a cardiologist as soon as possible. The specialist he spoke to didn't think I needed to be seen urgently, and after hanging up the phone my dr was pissed at himself for not lying about which kind of heart murmur he had heard (to make it sound more serious). I commented on how it was f'ed up that he would have to lie to get me the care he thought I needed, and his take on it was that it was the specialist's job to screen to make sure the neediest got in first, but it was _his_ (my dr's) job to make sure that I was ok, and if that's what it took then that's what he would do. In this case it's your job (which you are doing an amazing job at mama!) to make sure your dd is ok, and so I officially absolve you of any guilt if you decide to fudge things a bit if you go the ER route.


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## PlayaMama (Apr 1, 2007)

s mama.

you're dealing with the hardest part of being a mama right now, how to take the best care of your little one that you can.

healing wishes for your dd.


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## buttercups.nest (Jul 2, 2009)

Quote:


Originally Posted by *CarrieMF* 
She knows exactly what she's doing it. Is it irritating, yes. At home ignore it. If it means she pees her pants then she pees her pants & at 3.5 she can definitly help clean that mess up. If she eats cold food because it took her too long then so be it.

When you're out, give 1 clear reminder that if she falls down like that & cannot walk properly you are leaving. No if's, ands or buts about it. You will leave. She will act like she is today, upset that you went home but it will be reinforcing to her that the behaviour is not acceptable.

You need to be firm in your expectations, give 1 reminder & don't bring attention to it again for that event. She will not be happy about it, but she is old enough to understand that her actions have consequences.

This is what I would do.


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## NiteNicole (May 19, 2003)

More update (I posted this in SN forum as well).

She is much worse today. She can't really walk without leaning on someone. I don't know what to do for her or who to call. We saw her ped this morning and she was walking better but now it's just really bad. She has a sinus infection and the beginning of an ear infection so we're trying to clear that up so she can have the MRI. It's not till the tenth. How are we going to wait that long? Shouldn't we be able to get in somewhere sooner? How is it possible she's this bad and has to wait for that? And the ortho won't call us till Monday at the earliest.


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## texmama (Jun 4, 2005)

I would call the ped Now, before the weekend. Tell them that it is so much worse now (since this morning) and mobility is decreasing fast and tell them you want the most aggressive option available - mention the ER and see if there are any other recommendations from the ped. If not, head to the ER.


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## NiteNicole (May 19, 2003)

I am trying to tell myself that since both the ped and the neuro have said "we've ruled out all the big scary stuff" and neither is acting very urgent, maybe I can believe them that this is something managable.

I will call the neuro and get in for Monday and if things get worse, I'm bypassing the ped and going to the ER.

Also, they can not do the MRI till this infection clears. I keep forgetting that. She will have to be sedated (also scary) because she's only three, she can't be still that long. And she's terrified of loud noise. I am thinking as soon as the nose stops running, I'm taking her to the ped that day and having him give the all clear on the infection and then I will be happy to go ANYWHERE for an MRI. The neuro specifically wanted us to use a perticular hospital but I don't care. I will go wherever they will see her.


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## crl (May 9, 2004)

I continue to think about you and your daughter and am sending you both positive thoughts.

Catherine


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## NiteNicole (May 19, 2003)

Thank you so much, and really everyone who keeps listening to me talk about this and for keeping us in your thoughts and prayers. It means SO much. Thank you.


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## balancedmama (Feb 16, 2007)

I think you said there was a Children's Hospital nearby...honestly I would go there if she gets any worse. They would absolutely be able to do the MRI even if she does have an infection. I have personal experience with a close family whose daughter had similar progression of symptoms...and kept getting blown off as well! So frustrating. After witnessing their journey, I do feel that getting to see specialists in CHILDREN was what finally got them diagnosed quickly. I would look at the big picture here and say...okay you have a previously healthy child who is unable to walk without support and is progressively getting worse over a period of time. To me...that is something that needs to be dealt with on an urgent timeline.


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## NiteNicole (May 19, 2003)

They would do an MRI with sedation, even with an infection?

I'm worried that if I just show up in the ER on a Saturday and she's not in any pain, they're just going to send us home. That's pretty much what their website says. I am worried about exposing her to a lot of stuff when we SO need her to be healthy and then not getting the MRI on the tenth. I will call her ped and neuro ask once the runny nose dries up and the infeciton is gone, will he please send us ANYWHERE for an MRI.

It's like I don't know how the system works. CAN I just take her somewhere? Will they see her? Is that what I'm expected to do? Yesterday, her ped didn't seem all that urgent that she had gotten worse (as with Dystonia, it is up and down and that's normal, and if it's an injury she's not hurting) and the Neuro didn't seem all that distressed that the MRI got moved. It's not like they forget about us as soon as she leaves the office, both have called us out of hours at home to see if she's getting better so I know they're aware of what's going on. It's so confusing.


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## crl (May 9, 2004)

I can't tell you what I would do in your shoes. But I'm not a hundred percent convinced I'd try the ER or even try to get the MRI moved up.

If you feel confident that the ped and neuro have ruled out anything that would be made worse by waiting and your daughter isn't in pain, I think I would wait it out. Your doctor probably has a reason to want the MRI done at a particular place. It might be something that doesn't really matter to your daughter's care (like a friendship with someone at that place), but I think it might be that he knows the images are better there. Or get read sooner. Or they are more experienced with sedating little kids. You could always ask why that place.

If you don't feel sure that the doctors have ruled out things that would get worse by waiting, then seeking an urgent second opinion makes more sense. It's possible that you would get that by going to the ER. But it's also possible they would see her and send you home with a referral to another neuro. . . . Whether or not that referral would get you in any sooner is going to vary by doctor I think. You could also try just calling neurologists offices, including the department at the children's hospital to see if you can get in quickly for a second opinion. You never know when someone might have a cancellation.

Anyway, I don't think I've been very helpful. I guess I just wanted to say that I think you could reasonably go either way--seek urgent help or wait.

Catherine


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## quelindo (May 11, 2005)

I don't have any answers for you, but I wanted to add my voice to those saying they are thinking of you and your family. (((HUGS)))


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## NiteNicole (May 19, 2003)

Quote:

but I think it might be that he knows the images are better there. Or get read sooner. Or they are more experienced with sedating little kids. You could always ask why that place.
The neurologist told us she wants us to use a specific hospital because she "trusts their radiology department" - I think that's what she said. When she first set it up, we got an appointment like five days later. Then the tonsillitis, and that is why the long wait.

Today DD is having a really difficult time walking. It gets worse every day. I noticed that some steps are harder than others - like walking forward is difficult, but she often backs up or shifts from one foot to the other or goes sideways and it's a lot easier. So I asked her if it was easier to slide her fee than to pick them up. It seems like it is. She's not shuffling, but sliding her bad leg in steps that are as long as the one she takes with the other leg, if that makes sense. She was SO EXCITED that it was easier. She's only commented once or twice that her leg is wobbly, but it must have been really bothering her because she was so relieved. It's not like she's draging the leg, she's sliding her foot.

I don't know what to hope for. On the one hand I think ok, if it doesn't progress we will handle it. There are many things she can do. And then I think ok, don't think like that. It's a knee problem or a foot problem and they'll fix it and we'll move on and this will just be a bad memory. I just pray and cry and feel so awful for her. I can't find a peaceful place within myself to manage this. I know that my worry does not make anything a bit easier for her, and it won't change the outcome, but I just can't get a quiet place for myself about this. And I don't know what I should be doing for her.

Thank you thank you thank you all for listening. EVERYTHING is helpful. Having people hear me is the most helpful thing.


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## Limabean1975 (Jan 4, 2008)

Hey...I've been following this thread and it's time for me to chime in, just to tell, I too am listening and thinking of you.


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## Limabean1975 (Jan 4, 2008)

Hey...I've been following this thread and it's time for me to chime in, just to tell, I too am listening and thinking of you.


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## NiteNicole (May 19, 2003)

Thank you. I feel like I check twenty times a day. Just being able to talk about it and have someone give some feed back is so helpful. Thanks.


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## mamakay (Apr 8, 2005)

If she's basically in a state where she can't walk without help, it's ER worthy, IMO. They might even decide an immediate MRI is justified in spite of the infection, given how quickly it's progressing.

Can you call her neuro?


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## coleslaw (Nov 11, 2002)

I just found this thread today and I cannot believe how everything progressed. I'm glad you are taking steps to figure how the physical problem. If I found this thread earlier, I think I probably would have agreed with the original thought of her being in a battle of wills.

What I am about to say comes from a gentle place...One thing I would like to recommend, something for you simply to consider, is getting yourself to a doctor for yourself to find some way to calm you down. You need to be at your best for her and if you are panicking and getting too anxious (not that I blame you, of course, but I think one of your posts mentioned your tendency to panic and anxiety), she may sense it and it may not be good for her. I would imagine taking care of yourself is the last thing on your mind and she is taking up all of your thoughts, but please consider it. I've been there in my own way and wish I had looked into taking care of my anxiety so I could help my children better cope with things. Just a gentle thought for you. I hope I didn't offend you in any way and I wish you and your daughter all the best and will be thinking of you and reading here waiting for updates.


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## RiverSky (Jun 26, 2005)

I don't have any specific advice, but I want to send strength and hugs to your family and your daughter, in particular.


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## NiteNicole (May 19, 2003)

She's scooting around better now. She can walk by herself but it's very wobbly. I can't say it's a lot easier with me helping by holding her hand because she's so independent, she doesn't want to lean on me. She likes holding hands, just not using me for help. If I'm not with her and she needs to get to the bathroom, she can get herself in there. She's figured out she can slide one foot and that makes it easier.

At this point my plan is to call the ortho at Children's on Monday and ask for the next available appointment with anyone. If it's not soon (and I mean like ASAP, work me in, let me wait all day, I DO NOT CARE), I'll call her ped and let him know just how bad it is and see if he can get us in with someone. If, God forbid, the ortho can't do anything for us then I'm going to ask for another neurologist at Childrens, preferable a movement specialist. I'm also going to call her neuro on Monday and let her know how bad it's gotten and see how she reacts. That's going to tell me a lot about whether or not we continue with her. She's very nice, my daughter LOVES her and they have a good rapport together but this is not her area and she's sent me away with zero info on this. She's still kind of "let's wait and see if it's dystonia" and "I think it's dystonia" and that's not her specialty.

I can't say it enough, thank you all so much for hearing me and supporting me and being my sounding board. And for not flaming me for taking so long to get her to a doc. I swear, I never thought it was anything more than three year old stubbornness and my heart is breaking for that.


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## lolar2 (Nov 8, 2005)

While she is waiting for her appointment for the MRI and all that, she certainly should be entitled to some kind of mobility device to help her out until they know how to treat her! I would call your regular ped and ask (firmly) for a prescription for some kind of a cane or crutch or something, that you can get right away on Monday. She shouldn't have to rely on a stroller or on hanging on to your hand all the time-- she SHOULD be able to have mobility independence NOW, not after the MRI. Apparently the doctors haven't been considering that, but you can. Whatever the problem is, even if she regains the entire use of her leg, that will probably take some time to heal. Unless they think that it is very likely that she has some condition where using a mobility device would be outright harmful, a temporary crutch or cane until further notice sounds as though it would be really liberating for her. I mean-- what if she had a broken bone in her leg, she certainly would get a crutch, right?

ETA: I imagine that some of your panic stems partly from seeing her not be able to move about and do the things she wants to do and go the places she wants to go. And some people think that seeing their loved one with a mobility device like a crutch or cane will make the impairment more "real" and be extra-painful, and that's true right at first, but then when she is able to use it freely to prance about and do normal 4-year-old things, it will make her much LESS impaired. Whether that's for three days or three weeks or three years.


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## NiteNicole (May 19, 2003)

Quote:

she certainly should be entitled to some kind of mobility device to help her out until they know how to treat her!
Thank you for this! I had no idea how to go about getting something like that for her. I would MUCH rather watch her get around with help than stumble and fall. THAT breaks my heart. I feel like I spend half my day hiding out crying and that is totally useless for her! I will talk to the ped about this ASAP. THANK YOU. This seems so basic but that's how lost I am in this whole thing. I don't know what our options are.

I also am pushing the ortho because she CAN jump on her (little, indoor with safety bar) trampoline (although she does seem to hold up her right foot when she does it) and she CAN ride her bike. If we could find a heated, indoor pool I bet she could swim. However, if this is something bone and joint related, maybe I shouldn't let her do these things? But if it's not, I feel like I HAVE to make sure she's doing them as much as possible. Getting the trampoline back and some long (for her) bike rides last week seemed to have corresponded with her situation getting worse but...how can I know for sure? IF these things aren't hurting I HAVE to let her do them and if they are I HAVE to stop. I feel like I'm doing damage either way if I DON'T KNOW.


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## FreeRangeMama (Nov 22, 2001)

Oh Mama, the not knowing must make it feel so much worse! It is hard enough to see our babies struggle, but to not even know what is helping and what is hurting.....

I so hope you get in to see someone MONDAY! You really shouldn't have to wait, and I can't believe they aren't taking this more seriously given the fact they haven't even ruled everything (like bone and joint issues) out.

I will be sending you all sorts of "get in quick" vibes come Monday


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## lolar2 (Nov 8, 2005)

I'm not an orthopedist or physical therapist or anything, but-- with my various mobility problems ranging from ordinary (broken foot) to less-so (autoimmune), the people who have treated me always said, "if it doesn't hurt, it's OK to do it." That was all as a teenager and adult though, so I don't know if it's different with young children.

I don't read Special Needs Parenting much because DS does not have any apparent special needs, but they can probably help you with negotiating insurance issues and rights.


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## pianojazzgirl (Apr 6, 2006)

How is the sinus/ear infection today? At what point do they deem her "well enough" to get an MRI? It seems ridiculous to me that you would have to wait until the 10th. If it takes freaking out at your ped or neurologist or going in to the ER to get it sooner that's what I would do. My take on it is, talk to your dr on Monday, and if they don't give you the help that you need then truck on in to the ER. I have a friend who is an ER nurse and I will ask him what he thinks about bringing her in there. I have had drs tell me that you will get better (as in more immediate, with more extensive testing) care if you go in to the ER with a serious problem. I know it's not an "emergency" as in bleeding to death or something, but to your poor heart this is an emergency, and you need to get some definitive answers NOW not in two weeks time. My heart goes out to you mama. I'm thinking of your and your dd a lot.









Please take care of yourself. I can't even imagine how stressed out and upset you must be. I know I would be a wreck. I don't deal well with stress, and I find it very hard not to show my emotions when I'm upset, even though I know for my kids' sake I should be trying to stay calm. I think it's not at all a bad idea to talk to a dr yourself about getting a prescription for some anti-anxiety medication (as a pp suggested). Or you could try Calmes Forte or Rescue Remedy. I know you said that you're having a hard time finding a calm place in your mind right now. Don't be afraid of looking for some help.


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## NiteNicole (May 19, 2003)

She woke up and threw up this morning. It was (sorry, TMI) just mucus in clear...stuff. She's also very gassy. No fever. She's had something to drink and some crackers in the last hour or so. We called her ped's emergency number and they said clear fluids, carbs, etc. No meds till tomorrow and then we'll see.

She took a really long bath and perked up a lot so I'm hoping she's on the upswing of whatever this is.


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## NiteNicole (May 19, 2003)

I am having a really hard time tonight. I'm so scared about the future. I'm still hoping this is just orthopedic and fixable because any little smidgen of anything I read about dystonia is so scary. I keep praying and praying. I don't know what else to do.


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## Limabean1975 (Jan 4, 2008)




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## momofmine (Jan 8, 2007)

Wow, really big hugs to you mama. I know you must be so scared. Have you ever used flower essences? Something like Rescue Remedy might be really helpful for me now if I were in your shoes. I will try and go to look up what other ones might be good.

One person mentioned the child who had a "flu" virus in the hip, and you are saying she has had tonsillitis and then sore throat, and now throwing up, could any of that be related??? Could it have gone into her joints there?

Also, did she have any vaccines, or was she exposed to anything different just before this all started?

I am so sorry you are going through this. I am sending you positive healing energy!


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## crl (May 9, 2004)




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## NiteNicole (May 19, 2003)

Quote:

One person mentioned the child who had a "flu" virus in the hip, and you are saying she has had tonsillitis and then sore throat, and now throwing up, could any of that be related??? Could it have gone into her joints there?

Also, did she have any vaccines, or was she exposed to anything different just before this all started?
She's had quite a lot of blood tests, I would think anything like that would show up? Right? And it doesn't hurt her.

The only "new" thing she was doing is this thing where she'd jump in the air and land on her knees in the W position. I am certain it would ruin MY legs.


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## NiteNicole (May 19, 2003)

Last night she was crying in her sleep about her leg being broken. I am just so heartbroken. Please pray for us that someone sees us today and that this is something orthopedic they can fix for her. I'm more terrified everyday.


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## pianojazzgirl (Apr 6, 2006)

Quote:


Originally Posted by *NiteNicole* 
Last night she was crying in her sleep about her leg being broken. I am just so heartbroken. Please pray for us that someone sees us today and that this is something orthopedic they can fix for her. I'm more terrified everyday.

You guys are in my thoughts a lot.







I am sending good wishes your way and visualizing the best for you mama.









I'll be waiting to hear your update after you've spoken to the drs. And please don't be afraid to take her in to the ER if that's what it takes. I just feel so bad for you, I know I would be overwhelmingly upset in your position, and I think that seeing someone today would really help. It is too much for your poor heart to have to wait and wait like this.


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## NiteNicole (May 19, 2003)

I feel like I am stuffing down a panic attack every minute of the day. Before, at least I could sleep but now the nights are so hard. I don't know what to do and I'm so afraid for her.


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## NiteNicole (May 19, 2003)

So we now have an appointment with a movement specialist on Wed, an appointment with a orthopedic nurse practitioner on Friday, a pediatric orthopedist on the next Tuesday, and her MRI on Thursday.

Thanks for praying for us. We're getting some doctors to see her. Some people were giving us appointments as far away as January and even March.


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## mouso (Feb 8, 2007)

Wow, mama, this has progressed so quickly into something so difficult for you guys.









I am glad to see you have appts lined up this week and will hopefully get some answers. Please update when you can. I am sending you guys healing thoughts and hoping this is something fixable.

Hang in there, mama.


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## momofmine (Jan 8, 2007)

Just wanted you to know I am thinking about you and your DD and hoping for good news and help soon, keep us updated.


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## NiteNicole (May 19, 2003)

My husband has been throwing up since 3 am so I guess my daughter was not just sick from the antibiotics. She's feeling fine today but he is a mess. I hope that if I'm going to get this, it will be over the weekend.

She was walking better yesterday and today. She's been off her meds since Sunday. Her first neurologist has not returned our calls. The one we are seeing tomorrow is about three hours away. I hope he has some good news.

Watching her walk now, it kind of looks like her ankle is unsteady. She can scoot backwards or sideways but in both cases, she slides her feet. She can get around better walking if she slides her right leg or slides her foot onto the floor instead of striking down directly. I don't know if any of this means anything. Is there any such thing as a painless foot injury with no swelling?


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## crl (May 9, 2004)

I'm glad you were able to schedule appointments! I don't have any suggestions, just wanted to let you know I've been thinking about you all. I hope your husband feels better soon and you don't get it!

Catherine


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## Starflower (Sep 25, 2004)

You are doing everything you can do. If something new or different concerns you (like the ankle) I think it would be helpful for you to document it and bring the info to the docs along with all the other history.

I am concerned for you as well as your DD. I know how awful / difficult is to deal with all the "what-ifs" that are bouncing through your brain, but they won't help you or change your situation. Document what you see happening and what your DD can share with you about it.

Perhaps if you write everything down, you won't have to keep going over it as much in your head. Then you wouldn't have to worry about forgetting about it or missing anything, and perhaps it would free your mind up a bit so you are better prepared to continue caring for your family and dealing with this terribly difficult situation?

(I have anxiety and OCD and writing out everything helps me sometimes.)

BTW, I'm so glad to hear you got some appointments right around the corner! I hope the stomach grunch clears up soon.


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## journeymom (Apr 2, 2002)

Quote:


Originally Posted by *coleslaw* 
What I am about to say comes from a gentle place...One thing I would like to recommend, something for you simply to consider, is getting yourself to a doctor for yourself to find some way to calm you down.

I really agree. Mama, I urge you to look after yourself, because you come across in your posts as though you are in full panic. That's really not good for you or your husband or your daughter. You can't make rational decisions. The blood tests done previously indicated that she does not have bone cancer or leukemia, right? Not that what she's experiencing now is A-OK. But she's got an MRI coming up, right? Perhaps you'll get some more answers then.

_I do sympathize._ When my son was 4 he developed a painful leg disorder that immobilized him for a while. During the time between when I rushed him to the doctor and we finally got a diagnosis and plan of treatment, I was painfully anxious. (Turns out he had Perthese syndrome, necrosis of the hip bones.)

Please get some rest. Drink some herb tea. Take some walks. Maybe spend less time reading and re-reading this thread!









Agreed with Starflower!


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## jgale (Jan 21, 2003)

Hoping things get better for you and your girl and that you get some answers soon.

I live very close to an excellent Children's hospital, and if I were in a similar situation, I think I would go to the ER--they will not turn you away, and you will be hooked into a system there and not be left to try to get this all taken care of on your own.

Good luck.


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## NiteNicole (May 19, 2003)

So just got back from seeing the neuro. He is not pediatric but he is a movement specialist. He watched my videos and listened to our story. He said he couldn't see any reason for her to be having any trouble and that he'd had a lot of success with kind of mysterious muscle stuff (probably not what he said but I'm tired and malnourished so work with me) by using anti-convulsives. He didn't say dystonia till I did and then said focal dystonia was a possibility. I asked if it would progress and he said he didn't expect it to "disrupt her development." It wasn't till I repeated this to my mother that I thought hey, um, what does that mean? He says to leave her on the Sinemet and see what happens between now and the next visit. She's actually getting better since she stopped it, but she's also been sick and then had a lot of rest. Who knows.

He wants to see us right after Christmas, when we have the MRI. The other neuro doesn't want to see us till MARCH.

So Friday and Tuesday we will see pediatric orthpedists and Thursday she will have the MRI. Then we will see this neuro on Dec. 28th and we have another lined up (different neuro, ped, I forget where. Childrens, maybe? Who knows) on Jan 6, happy birthday to me!

So that's what's going on with us. I have decided I am not helping anyone by obsessing about it. I am not going to do any more searching online and I hope I can kind of not talk about it, because that ends badly. I'm not eating. I can't sleep. When it comes up in my head, I'm going say a prayer and let it go. Last night I had a really awful thought but it's true, I can't make this be something it isn't. I can't hope it into a different thing. I can't tell the doctor what *I* want them to hear because it will *sound* more orthopedic. I have to just say a prayer and let it go or I'm not going to make it. I am blessed. My husband has been a rock. My daughter is happy and not hurting. None of her doctors have said I need to panic, they only say that it can progress when I prod them and they say yes, sometimes it can. I don't like that, but I can't change it so I just won't think about it. I stayed up all night one night watching her sleep and trying to see if she was having any spasms in her arms or legs. That is no way to live. She's happy and I need to just be thankful for that.

I am not resigned but I can not spend every moment in outright panic because that is where I have been and it's not helping a thing.


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## momofmine (Jan 8, 2007)

Big hugs to you mama. I can't even imagine what you must be feeling. I completely understand your panic. And sometimes it is just good to come on to a place like this and let it all out, so don't worry about coming across as being panicked and not taking care of yourself. I tend to need to process things verbally, and so sometimes it helps to just vent it all out here! So don't worry about that, seriously.

Have you thought about seeing an alternative health care practitioner? Since you are already getting all the medical help it seems like you can, maybe try something else with it? I know you said a chiro might be contraindicated with dystonia, but what about just seeing an ND or maybe even an MD who uses complementary medicine? We see a familiy doctor (MD) who is also a homeopath, and I would be seeing him first, even if just for guidance on what to do.

Good luck!


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## Marylizah (Jun 17, 2005)

Many hugs, mama, I've been following this thread for awhile.

You are absolutely right. You can't control this, or change it by worrying. You can only make yourself sick and fragile. I think you are on the right track here-- you have everything lined up, you're taking it as far as you can, now you need to let it go a bit. Rest. Eat. Be thankful for what you have right at this moment. Aim for peace. Do not google anymore.

You and your family are in my thoughts.


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## journeymom (Apr 2, 2002)

Quote:


Originally Posted by *NiteNicole* 
I am not resigned but I can not spend every moment in outright panic because that is where I have been and it's not helping a thing.

You're finding balance. It's all about balance.


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## catballou24 (Mar 18, 2003)

I am so happy to hear that you are getting to a place of balance within yourself and that things seem to be moving forward with your DD's doctors. Hopefully the answers will be swift in coming....


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## NiteNicole (May 19, 2003)

Thanks so much for all your continued support. Another appt tomorrow, say a prayer.


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## Starflower (Sep 25, 2004)

Best wishes for your appointment.


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## Limabean1975 (Jan 4, 2008)

Thinking of you today.


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## NiteNicole (May 19, 2003)

So this doctor says nor orthopedic and recommended a neuro with whom we already have an appointment for a third opinion. We have kind of ruled out the first neuro as she has not called us back since Monday, when we called her and said my daughter was doing so badly that we thought she needed a walker and also, they needed to increase the prescription pill count because she told us to start giving her more. So we will have her MRI next Thursday and then see the second neuro on the 28th, then another pediatric neuro on the 6th of Jan. And that's the plan.

For today, I will be glad they didn't put her through any unnecessary and painful tests at the ortho.


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## Starflower (Sep 25, 2004)

Glad to hear you have a good plan in place. And also happy to hear that your DD didn't have to undergo any painful testing.


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## crl (May 9, 2004)

I'm glad you've got a plan in place.

Catherine


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## pianojazzgirl (Apr 6, 2006)

Hey mama, still thinking of you guys a lot. I am so glad to hear that you have managed to reach a bit of a calm place within yourself to deal with this. I'm also glad that you now have a bunch of appointments set up _soon_. Did the neuro that you saw on Wed actually prescribe anti-convulsants or would he only do that after some more tests (MRI)? And how is your dd doing? Getting around better than before?

Continued good wishes coming your way....


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## NiteNicole (May 19, 2003)

My daughter actually seems to be getting better, certainly A LOT better than last weekend when she was really really stumbly. We were carrying her a lot, although if she had to go from the living room to the bathroom on her own because no one was in there at the moment (RARE), she could make it. She was slow, wobbly, and leaning on furniture. She's been SUCH a trooper. Other than mentioning twice that her leg was wobbly, and crying about it in her sleep one night (heartbreak), she doesn't complain and has been in a good mood and up for anything. Even though she's been sick.

The most recent neuro said to keep trying her with the curren med because it can take a while to get the dose right and then we could later try the anti-convulsant. He isn't making any changes till he sees the MRI and talks to us again. He may also want us to keep trying this and wait and see, but as long as he wants to see us often and check in, I will be happier than with the first one. And then we have a third in Jan who is pediatric, and I want to see what he has to say as well.

Thanks for continuing to think of us and pray for us. She is not unhappy or hurting and I'm trying really hard to focus on that.


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## titania8 (Feb 15, 2007)

just popping in to say i've been thinking about you lately. glad to hear you have a plan and are finding some peace, and most of all that your dd is not hurting.


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## pianojazzgirl (Apr 6, 2006)

Thanks for updating us, mama. I'll be keeping an eye on your thread for further updates.


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## NiteNicole (May 19, 2003)

She has her MRI tomorrow. Please pray for her, that it's not too scary and that the news we get is good.

Thanks for continuing to think of us and keep us in your prayers.


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## Starflower (Sep 25, 2004)

Sending you hugs and positive energy.


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## pianojazzgirl (Apr 6, 2006)

You guys will be in my thoughts big time tomorrow. I'm sure she will do just fine with the MRI mama. Is it at the Children's? (sorry, I forget if you already mentioned that). If so (and even if not!), I am sure the staff have had lots of little kids in for MRIs and know just how to handle it with them to make it less scary. And she will be sedated too, so hopefully she'll just zone out. Anyway, breathe deep, try to stay calm, and know that lots of people are sending good thoughts, wishes and prayers your way.


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## NiteNicole (May 19, 2003)

Thanks so much. It really does mean a lot to know so many people are praying for us.


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## AbbieB (Mar 21, 2006)

So how did the MRI go? Well I hope.


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## NiteNicole (May 19, 2003)

She was a champ going in. She didn't fight or even cry. She had her Scooby with her. We could hear her screaming when she started coming around. That was horrible. A friend of mind whose child had just had an MRI with sedation warned me that they usually fight and cry (and sometimes throw up and convulse) when they wake up so I was prepared, kind of (you would think ANYONE at the hospital or her ped or someone would have mentioned all that because it was AWFUL but nope). Once she got her eyes open, she still cried to go home but she stopped fighting and eventually calmed down. Once we got to the car she was much better.

She's very wobbly today and the neuro has not called with the results yet, but at least this is behind us and she remembers just the first part (where they put the "stinky elephant trunk" - gas - on her) but nothing else.

Keep us in your prayers.


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## pianojazzgirl (Apr 6, 2006)

Aw, brave girl. That must have been so hard seeing her all freaked out afterwards.









Continued good vibes, positive thoughts, and well-wishes coming your way. I'll be watching for an update with the results.


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## Surfacing (Jul 19, 2005)




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## journeymom (Apr 2, 2002)

Quote:


Originally Posted by *NiteNicole* 
you would think ANYONE at the hospital or her ped or someone would have mentioned all that because it was AWFUL but nope

What is that about?! I resent it when med providers don't explain what to expect. It just seems like basic care and saves for a lot of fear and anxiety later on.

Maybe they figure ignorance is bliss. Maybe not all kids have that experience, so why worry them and their parents if it won't be an issue. But me personally, I'm happier knowing as much as possible ahead of time about what a medical procedure might be like.

Continued best wishes for you and yours!


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## NiteNicole (May 19, 2003)

The MRI is clear. No abnormalities at all. And while it means we still don't know exactly what's up, it also means no tumors or anything like that. It's a relief.

Now we can move on to treating the symptom, I guess.

Thanks so much for hanging in with us. Your continued prayers and thoughts mean so much to me. I just can't tell you. Thank you.


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## KatWrangler (Mar 21, 2005)

Quote:


Originally Posted by *NiteNicole* 
She was a champ going in. She didn't fight or even cry. She had her Scooby with her. We could hear her screaming when she started coming around. That was horrible. A friend of mind whose child had just had an MRI with sedation warned me that they usually fight and cry (and sometimes throw up and convulse) when they wake up so I was prepared, kind of (you would think ANYONE at the hospital or her ped or someone would have mentioned all that because it was AWFUL but nope). Once she got her eyes open, she still cried to go home but she stopped fighting and eventually calmed down. Once we got to the car she was much better.

She's very wobbly today and the neuro has not called with the results yet, but at least this is behind us and she remembers just the first part (where they put the "stinky elephant trunk" - gas - on her) but nothing else.

Keep us in your prayers.


Did they give her Versed? I hate that stuff. I refuse to let my kids have it.


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## Starflower (Sep 25, 2004)

Thanks for the good news. So glad to hear she has no tumors or anything like that.


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## pianojazzgirl (Apr 6, 2006)

Oh what a relief that the MRI came out clear.


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## l_olive (Jan 18, 2005)

Quote:


Originally Posted by *NiteNicole* 
The MRI is clear. No abnormalities at all. And while it means we still don't know exactly what's up, it also means no tumors or anything like that. It's a relief.

Now we can move on to treating the symptom, I guess.

Thanks so much for hanging in with us. Your continued prayers and thoughts mean so much to me. I just can't tell you. Thank you.

That's very, very good news!!


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## honeybunmom (Jan 11, 2007)

Very glad to her the MRI came back clear!!


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## crl (May 9, 2004)

Glad to hear the MRI came back clear! I hope you all have happy holidays.

Catherine


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## momofmine (Jan 8, 2007)

That's great! I hope you get some answers on what is going on, and at least now you can rest a bit easier on things. Good luck!


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## NiteNicole (May 19, 2003)

Also posted in Special Needs:

Update:

Saw the neurologist again today.

This guy, I really like. He's a little odd but I ask a question and there's a pause while he THINKS IT OVER instead of just spitting random thoughts at me or making his answer fit what he's already told me. I asked about the Reglan she took as an infant and we talked about it, decided that wasn't an issue but then he was all, "But good thinking. Those are good questions" so I feel encouraged to keep bringing him these random things. He also remembered what we talked about last time, down to random stories he told us about other treatments, which is nice. He would ask a question and then say ok, let me check my notes and then you answer, I don't want to feed you answers because there is so much for you to remember.

So. At this point, he's ordered occupational therapy and prescribed an anti-convulsant. I can't remember the name and have to pick it up later. It's a small dose, twice a day. We should see some results in a week or two if it's going to be helpful, not full results but something. He also said that the Seniment can sometimes cause a big dramatic improvment that tapers off and the dose has to be adjusted, which was good to hear. She DID have a great first month but I was thinking it might not have been the meds and then what? Because with Dystonia, those kinds of drugs are pretty much the "miracle cures" and then it's a big question mark.

I also got some more info about Dytonia because there are so many different types and honestly, I just want the info as I need it and I want the infor relevent to S and not ever scary fact and case out there. We already knew there were different kinds and dystonia is a bit of a catch-all, but it also has some specific paths and types as well. There's a primary dystonia, focal dystonia, and dystonia as a symptom of something else. Because of all this he has suggested genetic testing since she has to have blood work with this new med anyway. I think they do it after a month and if there are no issues, it goes to every six months and then once a year or something.

So that's our thing for now. I was really really upset in the office but I'm trying to be positive. I keep coming back to - but she was just fine a few months ago and how is this happening but I'm going to try really hard to just focus on what's directly in front of us and not think about it in bigger terms.

She's had a rough time of it since right around Thanksgiving. I just want things to be easier for her before she stops trying.


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## crl (May 9, 2004)

I'm glad you are pleased with this doctor. That's huge!
Catherine


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## Starflower (Sep 25, 2004)

Thanks for the update. I've been thinking about you guys. Glad the doctor is helpful and available to your questions. And glad you have a plan.


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## *LoveBugMama* (Aug 2, 2003)

I just read the whole thread, holding my breath most of the time.







Sending prayers all the way from Norway.


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## NiteNicole (May 19, 2003)

Hi in Norway! I was an exchange student there for a summer when I was much MUCH younger.

Thanks for thinking of us and sending us your good thoughts and prayers. I hesitate to say this, but she seems to be walking better. She made a really long walk by herself today. Her gait is still noticably off but it's steadier, faster, and stronger looking. Big prayers. I so want this to be the solution for her.


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## midstreammama (Feb 8, 2005)

Just read the whole thread. Wanted to offer you and your whole family hugs.


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## pianojazzgirl (Apr 6, 2006)

Hey mama.







Just wanted to let you know I've been keeping you guys in my thoughts. I'm happy for you that you've finally found a dr who listens and who is proactive. What a difference it makes to have someone who you really feel is on your team. Anyway, sending lots of good, positive, healing thoughts your way. I'll be watching for an update to see how it goes with the new meds.


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## *LoveBugMama* (Aug 2, 2003)

How are you doing? Still thinking about you and your sweet daughter.


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## pixiekisses (Oct 14, 2008)

I just read the whole thread, and I'm wondering how your daughter is doing now?







s


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## *LoveBugMama* (Aug 2, 2003)

Any updates?

Thinking of you.







:


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## NiteNicole (May 19, 2003)

Thanks so much for thinking of us. It's been a big week, she just turned four!

She had one day last week where I got very upset. She was so stumbly. She has certainly been much worse, but she had been getting better. I think she just really needed some rest so we've been getting her to bed on time and making sure she gets naps and yesterday and today she's been a lot better. I so hope the anti-convulsant is working and it will be a matter of working on her dose and getting her some PT to work out her gait. She wants to walk fast fast fast and gets tripped up and I think she's developed some habits to cope with the falling and isn't ready to give them up but she IS getting better. I'm hoping this is the answer for her. That or it's just going away and it'll never be an issue again. We will certainly "settle" for a full on miracle, you know!

Thanks for thinking of us and please keep praying for us. She has some genetic testing scheduled in two weeks and I'm very nervous about that.


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## momofmine (Jan 8, 2007)

Big hugs to you mama, and sending healing vibes to your DD.


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## Starflower (Sep 25, 2004)

Thanks for the update. Glad to hear she's been showing some improvements.

Good luck with the genetic testing.


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## NiteNicole (May 19, 2003)

She is much better than she was a before the anti-convulsant.

We are still working out how to get physical therapy for her.


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## NiteNicole (May 19, 2003)

We saw the neuro again yesterday. He ordered the blood work and we're waiting for them to let us know where. He said because of where we are, they may even come to our house to do it.

She has been doing a LOT better. She really seems to improve almost day to day. The doctor said things like, "oh, ok so it's still there" and "I can see she's still limping on the right foot" but he does not live with her day to day and know just how much better it is that she can walk at all. If you look for it, you can see that there is something going on with the right foot but man, it's SO much better. And the "dragging the right foot" is when she gallops. She either can't run yet or has stopped trying, but she does a gallop that is very fast. For her, this is a BIG improvement. She can run in place. She can dance. It's amazing. At first I was upset, but then as he kept talking, I finally got it - he wasn't disappointed in her progress, he expects that she can get even better. Miracle. Amazing. I'm floored. You know, you think you have faith and then what you're praying for happens and it's still amazing.

Still working on getting PT and OT because she has lost some strength from having so many months where she just couldn't get around. She also has some kind of poor habits that make her walk a little "off" but she seems to be sorting them out. We're getting there.

I so hope she continues to get better (we also pray that she won't get worse, that it won't spread) but wow, even if she just stays where she is this is SUCH a huge, massive, beautiful improvement.

Thank you so much, for everyone who has prayed and is praying for us and for all the support, ideas, and information. It means so much to us. I am tempted to print this very long thread so that when my daughter is older, I can show her how many strangers have been so kind and supportive for us.

I am just like this







right now.


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## Limabean1975 (Jan 4, 2008)

I'm still following this thread, and am thrilled to read of your daughter's amazing progress.


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## momofmine (Jan 8, 2007)

I am so glad that things are going better. I am wishing you continued strength and calm, and healing energy to your DD!








You are doing a great job, mama.


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## crl (May 9, 2004)

I'm so glad you shared the positive news with us!

Catherine


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## InchByInch (Aug 2, 2008)

I've just read this whole thread and just want to say what brave, loving parents your little girl has. She is so blessed to have you. Here's praying that she gets better and better and better, every single day!


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## Starflower (Sep 25, 2004)

Wow! This is quite an amazing journey for you and your family. Glad to hear DD is still improving and that you are feeling so hopeful.


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## *LoveBugMama* (Aug 2, 2003)

Yay!!!







I`m so glad things seems to be going great!!







Keep us posted!


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## mouso (Feb 8, 2007)

So glad she is improving!
Hoping for more and more improvement. Hang in there, mama!


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## NiteNicole (May 19, 2003)

So we finally got the genetic testing done. We got a call yesterday that the results were negative. There are some forms of dystonia that are genetic and of those, there are some they can test for. I guess we just ruled those out.

She had been doing really well, in fact the day before yesterday I was thinking WOW, this has been a really GOOD day, but yesterday was weird. She started having problems with her right hip. In the past, it has really looked like a foot/ankle issue but yesterday several times it was like her hip just gave out. I have no idea what this is about so I'm adding it to her notes to discuss it with her doctor.

She's had several busy days and later nights, she has a runny nose, I'm hoping this is just a result of being a bit tired and run down.

On another front, a local physical therapist has contacted us to let us know he does a free clinic once a week and he's asked me to bring her by today. This is WONDERFUL as we have not been able to find any programs that cover her, nor can we afford $400 (or $800 for PT AND OT) a week.

Still planning to list our house next month, hoping to sell and get us into an area with more to offer her as well as save some money as all these medical bills are adding up FAST and we are very shortly going to be in trouble. We are ebaying all the clutter and taking a lot of stuff to donate and to consignment because our next place, if we're lucky enough to sell this house, is going to be a lot smaller.

Sorry it's been so long since my last update, THANK YOU for thinking of us and praying for us.


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## Starflower (Sep 25, 2004)

Thanks for the update. Good luck with selling your house. Glad to hear DD is doing OK and that they were able to rule out some genetic stuff.


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## NiteNicole (May 19, 2003)

Thank you!

Today we spent a long time with this physical therapist. He has a lot of experience (20 or 25 years, much of it in peds) and says to him it presents like an impinged nerve. He spent a lot of time watching her, assessing her, explaining things to me, and asking questions. He spent more time and went more in depth (for free) than any other doctor or therapist has and I so appreciate him setting this time aside for us. While I'm hesitant to get too excited, he says he's never seen any form of dystonia present the way she's walking. I'd really really like this to be something they can easily fix. I'm trying not to get too hopeful because it could be such a let down, but this would be an answered prayer and so much easier on her.

Please continue to pray for us and thanks to everyone who has read and left us some encouragement. It means so much to be able to talk about it.


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## mouso (Feb 8, 2007)

nak
I hope it's an easy answer like that pt thinks. Wouldn't that be amazing? Hugs to both of you and keep us updated.


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## NiteNicole (May 19, 2003)

Another update:

Saw our neurologist last week. Daughter is doing MUCH MUCH better. Walking, her gait looks fine. She has even picked up the pace quite a bit. She is so much better just since we saw the last PT. I had an appt with a chiro and had to cancel it because she had bronchitis. By the time she was over that, her gait was fine. She just made a huge leap.

The neuro said he wouldn't want to do a nerve conduction test on her because she'd already been through so much and the chances of it being useful were really really slim. If she were an adult or old enough to really understand what's going on, it might be worth it but he said to him (and he has kids, so...), it was not worth putting a child through it with such a low chance of finding out anything. He said not only can it be painful, but it can be really really scary for some kids.

He doubled one med (after bloodtests came back fine) to see if it would move things along a little faster, said that at this point her strength is fine and her balance is good so he doesn't think she'd really benefit from PT or OT (her hand strength and slight tremors seemed to be related to starting the meds. After just a few weeks, that had resolved itself) at this time. He expects a full recovery, to the point that in a few years we might decide to take her off the meds to see if she's - and here are the magic words - just outgrown it.

So, yay for us and thank you so much for all the prayers and good thoughts and advice. We appreciate all of it and feel free to keep it coming.


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## an_aurora (Jun 2, 2006)

So glad to hear that she's doing better!


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## mouso (Feb 8, 2007)

That's great news!


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## pianojazzgirl (Apr 6, 2006)

Oh mama, I'm so happy to hear the positive update! I've been thinking of you guys all along. Sending lots of full-recovery vibes!!!


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## choochootrain (Jul 14, 2007)

Quote:


Originally Posted by *no5no5* 
Yes, I read it. I would expect to see a progressive limp as a result of a real medical problem. I would expect it less in a faking situation. But let me be perfectly clear: A child who refuses for a week to walk without throwing herself to the ground every few steps, injuring herself in the process, is, IMO, a child who needs professional help, of one kind or another. Even if she is faking. Which, honestly, I think is far from clear.

ITA. Have you looked into transient synovitis?

DD had this when she was 3 years old. She didn't complain of pain, but she could not walk.

ETA: I posted before realising this was a 200+ posts thread... I haven't read all of it.


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## NiteNicole (May 19, 2003)

choochoo, I understand. It's a big long six month thread!

I have never heard of that (I have heard of other infections that settle or develop in the hip. I don't THINK I've specifically heard of this one). Your daughter didn't have any pain or didn't complain about it? DD has had no pain with this at all, ever. She doesn't appear to have any numbness or reflex problems. She could also jump on her trampoline and ride her bike the whole time. She's been sick a few times, but never had fever that wasn't directly related to whatever illness she had at the time. I hope your daughter is doing well now!

It's been a long winter.


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## choochootrain (Jul 14, 2007)

Quote:


Originally Posted by *NiteNicole* 
choochoo, I understand. It's a big long six month thread!

I have never heard of that (I have heard of other infections that settle or develop in the hip. I don't THINK I've specifically heard of this one). Your daughter didn't have any pain or didn't complain about it? DD has had no pain with this at all, ever. She doesn't appear to have any numbness or reflex problems. She could also jump on her trampoline and ride her bike the whole time. She's been sick a few times, but never had fever that wasn't directly related to whatever illness she had at the time. I hope your daughter is doing well now!

It's been a long winter.

hugs. i read only half of the thread by now.

DD's didn't last that long. She had no pain, but limped and couldn't walk. We took her in on the second day, and the family dr said it was probably transient synovitis. i don't rememberif she was given any meds? maybe. but she was better in a few days. She's almost 8 now, never had this issue again.


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## Starflower (Sep 25, 2004)

Thanks for the update! Glad things continue to improve.


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## daniedb (Aug 8, 2004)

Wow, what a roller coaster of a half-year your family has had! I'm so glad to read that your daughter is doing so well!







Thank you for sharing your journey. I'll be following along and I'm adding my thoughts and prayers to the bunch already being sent and said.


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## momofmine (Jan 8, 2007)

Big hugs to you and your DD!


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## Surfacing (Jul 19, 2005)

What a great update and a great relief!


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## New_Natural_Mom (Dec 21, 2007)

I have seen this thread a few times (and read the whole thing). I am so glad your DD is doing better. If the PT thought it was nerve impairment, might I suggest acupuncture? I don't know how well that would work with a 4 year old, but acupuncture is amazing. (It solved my infertility.) If you have a local practitioner you could call and ask some questions - it might be worth it and it is a totally natural approach!


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