# I'm worried that something's wrong with our 2.5 year old :-(



## Lillypop (Sep 3, 2009)

Help, please! We have an appointment with the pediatrician in 2 weeks, but I'd like to get a heads up as far as what to expect her to say ... and to see if anyone can either confirm or put to rest my worries. The appointment is just a "well-child" visit.

My stepson is 2.5 years old exactly (30 months). He was breastfed as an infant for a few weeks but then his mother stopped because he nursed very frequently and it was too stressful for her, so he was switched to formula (cow's milk) and he still wanted to eat "constantly". I entered his life a few weeks after his 2nd birthday. Here's what I observe ... and when I am comparing his development it's to my own 25 month old and to his peers (from playgroups, church, etc.)

He had all of his vaccinations up to 18 months, and has not had any since and will likely not, per our choices.

He eats a lot, and would prefer to eat all of the time. He never says that he is full or done. He will eat just about anything, no matter what it tastes like. If he doesn't like a food, he'll say so, but continue eating it. He eats VERY quickly, and often shakes (his hands and whole body) while he eats as he shovels the food in his mouth as fast as he can :-(. He sometimes eats so fast that he chokes. He doesn't chew sufficiently (and often doesn't chew at all, I have even seen whole foods, such as grapes and almonds and peanuts and such, in his diaper, completely unchewed) and does gag/choke at least once per meal. He gags to the point of regurgitating about every other day. He typically just keeps the regurgitated food in his mouth and chews once or twice then swallows again. He drinks A LOT of water but his urine is often quite dark yellow and strong-smelling. He can feed himself pretty well with a fork (a skill I taught him, previously his mother just fed him from her plate/bowl, I also taught him to drink from a cup which he is great at doing, before it was only sippy cups). He sometimes will eat and eat and eat and then say "it hurts!" but still ask for/want more food. If you tell him "okay, you're done, you've had enough, buddy" he will get sad. He cries at the end of a meal about once a day. Our eating patterns are thus: 7am (breakfast), 11am (a lunch, larger midday meal), naptime/quiettime (we avoid the midday sun outside), 3pm (a snack, smaller midday meal), 7pm (dinner, large meal), bedtime by 9pm. So we do feed the children often enough that they don't get too hungry, and yet he still asks all day long when we're eating, what are we having, when is food, I'm hungry, etc.

His bowel movements are normal for the amount of food he eats ... he puts a lot in, so a lot comes out. We're working on potty-learning and he's doing pretty well (sits on the potty when prompted, and pees and poops on there about 75% of the time, diaper only for naps/nighttime).

We try to limit him to appropriate toddler portions for his age and size. We encourage him to drink a whole glass of water (for his size) with each meal, and to take small bites, we cut up his food, we remind him to go slowly, chew, take a sip of water, etc. We eat mostly all organic, all natural foods. We rarely eat anything packaged or processed. I do a lot of cooking/baking and do my best to give us healthy, whole foods made from scratch. Lots of nutrient dense foods, too. I've considered that this could be a food allergy/sensitivity issue but I just wouldn't know where to start to try and figure that out, any advice is welcome. We do eat dairy, gluten, soy, all sorts of fruits and veggies, including peanuts, tree nuts, berries.

So, he's a foodie. He likes to eat, a lot. But why the shaking? And hardly chewing to the point of choking and vomiting??? He is also very small. On target for height for his age (not sure of the inches, but I know it's normal because I've measured and charted it recently) but only weighs 21 pounds and he looks underweight. He has hardly any muscle tone anywhere on his body.

He is very lethargic and slow. He does not run. When he walks he is very slow and purposeful. He doesn't usually walk heel/toe, he just walks by planting his foot down flat. He is afraid to walk on surfaces that aren't smooth, and avoids/gets nervous/upset by gravel, grass, bumpy dirt (such as a hiking trail). He cannot walk down stairs, but instead crawls down backwards. He is clumsy and uncoordinated, but so are most toddlers, right?

Tantrums ... he screams. Shrilly. Instantly, there's no real wind up period when he's sad/upset/angry he just SCREECHES. If he wants a toy someone else has, he screeches. Often there are no tears. There are actually only tears if he's truly hurt/injured. We do not respond to the screaming unless he is hurt or NEEDS something. If he is told to stop doing something (like please stop banging your fork on the table) he makes a sad face, winds up with his mouth open while he sucks in a breath, then there's a SCREAM! like in a horror movie. It's grating to say the least.

He has no interest in art activities. He won't scribble with a crayon, won't do fingerpainting (and if we dip his fingertip into the paint it brings on a screeching fit/tantrum), doesn't do/enjoy playdough.

Finger-sucking ... he does suck the two middle fingers on his left hand, which I presume is normal (my two children are both breastfeeding, 25 months old, and 4 months old, and neither sucks their fingers/thumb or has a lovey, so I have no experience with it). His fingernails on those fingers are deformed from his frequency and urgency of sucking (he sucks really hard) at nighttime, naptime, and randomly throughout the day (out of boredom, upsetness, etc.)

I just wish I knew this was all within the realm of normal, or what was wrong so we could help him.

Things he's great with - words, language development, can say the ABC's, very musical in that he can repeat a line of a song if you sing it, or imitate a tone/note perfectly in pitch. Full on sentences as far as language goes. He is very expressive and dramatic with his faces. Also he's incredibly cute, but maybe we're a bit biased because he's ours .

I've thought of so many things ... diabetes/hypoglycemia, a thyroid issue (explains the lethargy, thinness, super-hunger), some sort of muscular dystrophy type issue ... I just have no idea. I don't know much at all about autism/Asperger's syndrome and the symptoms. Maybe it's a combination of things, maybe it's nothing ... I don't know.

We just want him to be able to enjoy life more. To run and play with the other kids. To be able to savor food and not be upset every time a meal is over. To not just live to eat. To enjoy our arts and crafts activities.

I'll do my best to answer any questions.


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## EzzysMom (Mar 24, 2008)

I got to the middle of what you said the always eating, quite underweight, my DD is thin but younger and still weighs a lot more than that, and I think it sounds like thyroid disease. I'd move that well baby visit if at all possible. Sounds like he is indeed very hungry. Lots of other things you say don't worry me (no interest in art) but the lack of muscle tone, constant hunger (and the choking sounds like he's just absolutely famished). Distill your note here down to it's points and I'd bring it with you to the doc so you can remember to mention it all


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## Lillypop (Sep 3, 2009)

after a bit of research/reading on thyroid disorders (hypo), he is also typically very tired (will nap twice a day sometimes), and does have very dry, rough skin, despite constant lotion applications. thanks for the input.


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## crunchy_mommy (Mar 29, 2009)

You know, as I was reading this I was thinking he sounded pretty normal, a lot like my 16mo in fact, until I got to this part:

Quote:


Originally Posted by *Lillypop* 
He is also very small. On target for height for his age (not sure of the inches, but I know it's normal because I've measured and charted it recently) but only weighs 21 pounds and he looks underweight. He has hardly any muscle tone anywhere on his body.

He sounds underweight & almost malnourished. I know he is eating a lot but I wonder if his body is absorbing it?? I would definitely have him evaluated for thyroid & metabolic issues & maybe celiac disease as well. I'm not the type to be very concerned about toddler development but many things you mentioned in the second half of your post worry me A LOT.

I don't know how much of that is normal as my DS is younger, I'm willing to venture though that while most of the behaviors would be 'normal' on their own, that specific combination of behaviors is pretty worrisome.

I do want to mention that the frequency you guys eat (every 4 hours) would leave me famished. We eat 4-6 small meals plus snacks... depends on the day and the meals but if we go more than 2-3 hours between eating I will usually be STARVING and non-functional. I am hypoglycemic... but I don't think a lot of the other things you mentioned (poor muscle tone etc.) sound like hypoglycemia, at least not as I've experienced. But still, wouldn't hurt to try feeding him every 2-3 hours to see if that helps at all, until you get in to the doctors.

I would also question whether food intolerances were involved, especially dairy & gluten... I'd also consider sensory issues... maybe a developmental evaluation...

As the pp suggested, I would print out your post (maybe consolidate it if your pedi tends to do the '5 minute checkup' thing) and share it with the doc, also see about having the appointment moved up a bit & asking for extra time to discuss concerns.


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## SpuglyRoo (Aug 1, 2008)

Thyroid problems sound like a good bet, but have you considered something like Prader-Willi Syndrome? It sounds like what my DH Aunt has, but I have to admit it I'm not really informed as to how it presents in a young child. It is just that the eating problems really sound like her, always hungry, etc.

However, it could also just be toddler behavior, it is so hard to tell sometimes because toddlers do such bizarre things!








I agree with PP about making sure that your Dr. isn't going to just have 5 minutes set aside for a well check up. And trying to get the appointment moved sooner. Good luck!


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## beanma (Jan 6, 2002)

You might want to look into Sensory Processing Disorder. He may be sensory-seeking with the food and could be avoidant with the finger paint. I know a lot of kids who weren't into art as toddlers, though, so I wouldn't really worry about that. They're normal 9 yr olds now.

The low muscle tone can be correlated with SPD also.

The low weight with the amount he's eating is somewhat worrisome. I'd keep a food diary before your dr's appointment so you can show the ped how much is going in. The dr would be able to better gauge if something is really off with his weight that way.

Here's an old thread about SPD and hypotonia (low muscle tone): http://www.mothering.com/discussions...d.php?t=940081

hth


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## elmh23 (Jul 1, 2004)

It sounds like he has a couple things going on.

My thoughts are an allergy (low weight gain, lethargy, screaming), sensory issues (stuffing his mouth, not chewing, not walking on rough surfaces, the sucking so hard his fingers are "malformed") and possible hypoglycemia/diabetes (those issues could also be related to an allergy.)


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## triana1326 (Aug 8, 2007)

After reading your post, my first guesses would be thyroid issues as well as some sensory intergration issues. I'd also have the dr. check out the amount of nutrients he's actually absorbing.

Move the dr. visit up if you can. Sometimes, just a change of diet, adding supplements, and some sensory therapy may be all that's needed to help him...Hugs and good luck!


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## ameliasward (Mar 13, 2006)

The low muscle tone and preoccupation with food made me think of Prader-Willi Syndrome, although there are definitely other things that don't point to PWS (normal height, good sucking at birth). Good luck at the doctor appointment--I hope you get some answers.


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## JudiAU (Jun 29, 2008)

I don't have any help other than to say that it sounds like a malabsoruption issue? But I will say I think those are quite long times for a toddler to go without food. I think a snack tray might be helpful, and there would be maybe? less gorging at meals. Some kids to eat much more frequently. Also, if he is small, "toddler sized" meals might not be the best thing. Some kids just need to eat more, and I would be a bit concerned about limited his calories at his size.


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## JessicaS (Nov 18, 2001)

Have you discussed this with his ped?

My son is small, but he has a genetic issue that entails him being small. IMO there is something going on here and I would work with specialists to try and figure it out.


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## lookatreestar (Apr 14, 2008)

i would say he is not digesting/absorbing food or nutrients well?


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## ThisCat (Jun 19, 2010)

Quote:


Originally Posted by *Lillypop* 
Our eating patterns are thus: 7am (breakfast), 11am (a lunch, larger midday meal), naptime/quiettime (we avoid the midday sun outside), 3pm (a snack, smaller midday meal), 7pm (dinner, large meal), bedtime by 9pm. So we do feed the children often enough that they don't get too hungry, and yet he still asks all day long when we're eating, what are we having, when is food, I'm hungry, etc.

Not that this is the solution to everything, but those seem like really long periods of time for a toddler to go without eating anything. Mine would be asking me about food too if they were going four hours between snacks/meals. Maybe you could keep some healthy snacks out on a little table for him. Or if you don't feel comfortable with the whole grazing idea, you could build in a couple more snack times, particularly in the mid-morning.

Also, we eat breakfast at around 7am too give or take, and my kids would never make it till a 7pm dinner time, at least not without some serious whining. They would happily eat dinner at like 3:30. We usually feed them around 4 or 4:30 though. Is there anyway you could feed him dinner earlier? Or maybe turn that 3pm snack into a bigger meal for him and then let him snack later?

As to the fatigue and frequent napping, while I'm sure there could be other issues going on, I wonder if he might be a bit short on the nighttime sleep. Sounds like he's getting 10 hours or less. My daughter was sleeping about 12+ hours a night at that age, and so were many of my friends kids. Would an earlier bedtime work out schedule wise for you?

Anyway, those are just a couple things that jumped out at me. Some things in your post don't seem out of the ordinary to me (screeching tantrums, not liking arts and crafts) and some sound like they could be cause for concern (low muscle tone, low weight, not running).

I'd suggest calling your peds office and letting them know that you have a lot of issues to discuss at your appt. I don't think there will be enough time at a well child visits to address everything you have going on. Maybe they could schedule in some more time at the front or the back of it.


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## Anastasiya (Jun 13, 2006)

Oh, reading that made my heart sad. Your poor boy.







I hope you figure it out.

I did want to add two things: I would video tape what he does when he eats in order to show the pedi.

And after reading the symptoms of Prader-Willi I also am wondering if that's not part of it....nursing constantly as a baby because he was always hungry and had a poor suck, so he likely wore himself out, which would mean more constant nursing in order to get the food he needed.

Also, perhaps that's why he gags and chokes down food while eating, because he has such poor muscle tone in his mouth and CANNOT chew. It may be physically impossible for him, in which case I would cease all chokeables - esp nuts, grapes, popcorn, etc....offer only very small, very soft foods.

And offer snacks in between meals. My kids would be ravenous if they had to wait 4 hours between food times.

Please keep us updated.


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## RiverSky (Jun 26, 2005)

I didn't read the entire post, because I was so surprised that you are feeding a 2 1/2 year old peanuts, almonds and grapes. I didn't feed any of those things to my children until they were at least 3 (peanuts waited until after 4, due to potential allergies).

Especially if he is not chewing them properly, he isn't old enough to eat them, right?

I see that others have had much better and more specific advice but I did just want to give my teeny little two cents.


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## mum4vr (Jan 31, 2007)

You have a lot on your plate, and your dss is lucky to have you!

I agree w a PP about the video for the ped-- it can be enlightening for the dr to actually SEE what you mean.

I think your meal timing is right on (I know some disagree and that's ok too) but we all need time for our stomachs to digest and empty before refilling them or it can lead to other issues, and he has enough already.

My major point is: have you considered testing for intestinal parasites? I ask bc 3/4 of people in western, industrialized countries unknowingly have them when tested at random. It could explain his symptoms quite easily. It is also easy to treat w natural remedies. My ped told me that the most common ways to get parasites are: drinking water (even "tested" water has an "acceptable" number of parasites/ eggs in it), walking barefoot, eating meat, and exposure to animals/ pets.

Hope you get some answers.

blessings


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## zinemama (Feb 2, 2002)

You've gotten a lot to think about here. I just want to say that I think four hours between eating is way too long a stretch for a kid that age. He may well have other issues. But any child I've ever known would be very hungry long before it was time to eat in your house.


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## barefootmama0709 (Jun 25, 2009)

I have a 2.5 y/o too, and he would definitely be hungry if he had to go that long between meals. He usually has a BIG breakfast (between 8-9 AM) (2-3 bowls of cereal with milk, fruit, toast or eggs and LOTS of water) a snack around 10:30 (fruit or veggies, or sometimes something I've baked like banana bread), lunch, which includes a main dish (his favorites lately are baked beans or fish) fruit and veggies, a snack after his nap (around 3) another snack around 5, and then dinner at 7 PM. He is also fairly skinny. Your DSS could definitely be having thyroid issues or malabsorption issues, but I would definitely offer food more frequently, too.


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## Punchy Kaby (Mar 13, 2006)

I second the idea that he may have parasites. In the meantime, while you are waiting to see the ped. I would make him smoothies, jammed with good foods, (there are tons of recipes here on MDC) and give that to him between regular meals. How about digestive enzymes to help him digest his food as well?

Definitely video his behavior with food for the ped, or they are reluctant to believe that anything out of the ordinary is going on.


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## Bokonon (Aug 29, 2009)

I agree with the PPs, and also wondered why if he's asking for food between meals, he isn't being offered or given it, especially considering his extremely low weight.


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## Sierra (Nov 19, 2001)

Quote:


Originally Posted by *RiverSky* 
I didn't read the entire post, because I was so surprised that you are feeding a 2 1/2 year old peanuts, almonds and grapes. I didn't feed any of those things to my children until they were at least 3 (peanuts waited until after 4, due to potential allergies).

Especially if he is not chewing them properly, he isn't old enough to eat them, right?

http://www.msnbc.msn.com/id/9646449/ As far as that is concerned, I'd only worry about his difficulty with chewing.


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## Lillypop (Sep 3, 2009)

We had our doctor's appointment today. No answers, really. They tested his iron level, which is fine, so he's not anemic. The past few days he's been sick (fever, more upset/lethargic than usual, diarrhea) and yesterday and today he's had a lot of difficulty walking. DP thinks it's just weakness from being ill. I am very concerned.

We are now waiting to get a call to set up an appointment for a neurology consult. And tomorrow I have to call early intervention to get their help.

Adding ... DSS cannot stand on one foot, jump with two feet, he cannot run, and cannot walk down or up the stairs holding the railing (he crawls up and down the stairs).

We all went to the park tonight and he was very sad, lots of crying. Didn't want to walk at all. But he has to do some things on his own, right???

As far as our feeding schedule goes ... all of the meals are "meals" not really snacks, even if we refer to them as such. If we start eating breakfast at 7am, we're only finished at 7:45. So then I have to clean up, put dishes away (done by about 8:30 for breakfast), tend to the children for a bit (dress the toddlers and the baby, change DSS's diaper since he isn't PLed) ... for me to feed the kids every 2 hours is impossible.

And he was a total mess at the doctor's office. Cried, screamed, freaked because he had to get weighed, height checked, the finger stick was a disaster, wanted me to hold him, didn't want to sit on the exam table, get naked, the whole exam made him screech.

I'm feeling very overwhelmed. And DP keeps insisting this is all probably just no big deal but I'm not sure of that anymore. He thinks a bit of early intervention and maybe some extra nutrition will fix DSS. I'm terrified that we're facing the possibility of raising a special needs child.


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## spmamma (Sep 2, 2007)

Quote:


Originally Posted by *Lillypop* 
As far as our feeding schedule goes ... all of the meals are "meals" not really snacks, even if we refer to them as such. If we start eating breakfast at 7am, we're only finished at 7:45. So then I have to clean up, put dishes away (done by about 8:30 for breakfast), tend to the children for a bit (dress the toddlers and the baby, change DSS's diaper since he isn't PLed) ... for me to feed the kids every 2 hours is impossible.

I know it's hard to feed them frequently when you have more than one to care for, but there are ways to make it easier on yourself. First and foremost, try not to think of it as feeding them a "meal" every two hours. You've got your three main meals, plus a few snacks thrown in for good measure.

Snacks can be easy things like cheese sticks, cut up fruit, homemade fruit pops (blend fruit, yogurt and milk together then freeze), peanut butter on whole wheat toast, raisins, peanut butter balls, etc. Most every one of these can be cut up/prepared ahead of time - even the night before. Then, it's just grab and go. And if the weather's nice and you don't want to worry too much about clean-up, let them eat outside.

Oh, and don't forget about dips! Kids love to dip their fruit and veggies, and it's an easy way for you to sneak in a little extra healthy stuff. Plain yogurt is a good base for dipping... just add spices they like or blend up some veggies to make a veggie dip. We also dip peanut butter (the all-natural, no-sugar kind) and hummus.

Little ones need to eat frequently - not only does it fuel their bodies to give them energy and keep up with nutrition, it also helps with their behavior.

I know this isn't going to solve the problems you're facing, but maybe it can help a little bit. You're doing the right thing trying to get in to see specialists.


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## elmh23 (Jul 1, 2004)

No matter what happens, he is still the beautiful child you have always loved.


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## spmamma (Sep 2, 2007)

Quote:


Originally Posted by *Lillypop* 
And he was a total mess at the doctor's office. Cried, screamed, freaked because he had to get weighed, height checked, the finger stick was a disaster, wanted me to hold him, didn't want to sit on the exam table, get naked, the whole exam made him screech.

I should have mentioned this in my earlier post... DD is 3 and still gets freaked out by doctor appointments. When she was 2, she's scream and cry and tell the doctor to leave ("Bye bye!" - she wasn't very verbal at the time). Even when we talk about it with her ahead of time, some parts of it still freak her out. She just had her well child visit and, like your DSS, wanted me to hold her the entire time. It was very traumatic for her.

I guess I'm just trying to reassure you that at least this one type of behavior is rather "normal" at this age. Some kids just get really freaked out by that kind of stuff. DD is very spirited and as a result anything unexpected at a doctor's visit really throws her for a loop and can make the visit difficult for her.


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## peaceful_mama (May 27, 2005)

hmmmm I agree with you on this one OP....I have 3 kids. Two were raised with regular stair use, they could climb stairs holding a railing or a hand somewhere between 18 months and 2 years. (The 20 mo. old crawls, but the only steps he has been around are a large flight of cement outdoor steps that i don't *allow* him to climb.)

They have all been sick at various points in their lives of course, and never do I recall anyone who was walking having difficulty walking due to weakness while sick...being tired and not active yes. Walking less, of course. But difficulty doing it, no.

I don't know about standing on one foot, but I know my older 2 jumped and ran by age 2.5 for sure.

Also the food thing just doesn't seem 'right' somehow....whether it's sensory seeking or some other medical thing I wouldn't know, but it just doesn't seem right.

I say follow your gut and do the EI. My oldest went to preschool this way, his delays were language related. He is now 5.5 and about to enter kindergarten *without* an IEP. He also has been reading for probably close to a year now, uses the computer totally independent (supervised of course lol but he knows what he is doing), rides a bike without training wheels, can *almost* swim....you can't tell a difference between him and other kids his age at all. (I'm not saying this is what happens with ALL kids, but as a former assistant in a classroom for kids on IEP's--early intervention preschool--and my son's experience, I think they *all* benefit from it.







)


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## crunchy_mommy (Mar 29, 2009)

Quote:


Originally Posted by *Lillypop* 
We had our doctor's appointment today. No answers, really. They tested his iron level, which is fine, so he's not anemic. The past few days he's been sick (fever, more upset/lethargic than usual, diarrhea) and yesterday and today he's had a lot of difficulty walking. DP thinks it's just weakness from being ill. I am very concerned.

I'd be concerned too... that doesn't sound normal...

Quote:


Originally Posted by *Lillypop* 
Adding ... DSS cannot stand on one foot, jump with two feet, he cannot run, and cannot walk down or up the stairs holding the railing (he crawls up and down the stairs).

Hmm my 17mo can do all those things except jump well... But he's only 2.5 right? So maybe he's just late, I'm not sure how late is considered a problem.

Quote:


Originally Posted by *Lillypop* 
We all went to the park tonight and he was very sad, lots of crying. Didn't want to walk at all. But he has to do some things on his own, right???

That sounds like my DS when he doesn't get enough rest or something. Was he still not feeling well? Or does he act sad ALL the time?

Quote:


Originally Posted by *Lillypop* 
As far as our feeding schedule goes ... all of the meals are "meals" not really snacks, even if we refer to them as such. If we start eating breakfast at 7am, we're only finished at 7:45. So then I have to clean up, put dishes away (done by about 8:30 for breakfast), tend to the children for a bit (dress the toddlers and the baby, change DSS's diaper since he isn't PLed) ... for me to feed the kids every 2 hours is impossible.

Goodness, what kind of breakfast are you preparing that it takes 1.5 hours!?!







Well maybe I'm just incredibly lazy, ours take 1/2 an hour tops, including prep & cleanup... But maybe you could simplify the meals a bit... and it shouldn't take any/minimal prep work to offer fruit & yogurt, or veggies & hummus in between snacks/meals... But I'm wondering if his feeding issues are making this more of an obstacle for you.

Quote:


Originally Posted by *Lillypop* 
And he was a total mess at the doctor's office. Cried, screamed, freaked because he had to get weighed, height checked, the finger stick was a disaster, wanted me to hold him, didn't want to sit on the exam table, get naked, the whole exam made him screech.

I think that part is totally normal -- I actually acted like that at the doctors 'til I was at least 10







I haven't seen many kids who like the doctors (though my DS does now because our doc doesn't make him undress or sit on the exam table etc. but he still protests when it's time to get weighed).

Quote:


Originally Posted by *Lillypop* 
I'm feeling very overwhelmed. And DP keeps insisting this is all probably just no big deal but I'm not sure of that anymore. He thinks a bit of early intervention and maybe some extra nutrition will fix DSS. I'm terrified that we're facing the possibility of raising a special needs child.









I understand your fears but I think you're jumping the gun a bit... A lot of these sound like sensory/developmental issues that can be corrected or at least greatly improved with the right therapy & support. Did you post over in the Special Needs forum at all? I bet they'd be able to provide a lot of insight. Hang in there mama!!


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## rightkindofme (Apr 14, 2008)

Very respectfully, it sounds like you are making food stuff harder on yourself than it needs to be. That's a LOT of time spent on meals. And my 25 month old would absolutely not handle going 4 hours between meals. She pesters me for food all.day.long. She's pretty dead on average for height/weight but she RUNS through life and she just needs a lot of calories. There are many meals when she eats more than me.









We eat breakfast around 7-7:30. Then she has a snack between 9:30 and 10:30 depending on how much she is pestering me for food. Then we have lunch around 11:30 or 12. Then she has a small meal/large snack around 3. Then we have dinner around 6/6:30. She would strongly prefer that we have dinner a bit earlier than that but we wait for my husband to come home.

Most of these food times don't involve a lot of prep/work. Snack could be fruit, cheese, pickles, carrots with peanut butter, other random veggies we have sitting around, bread with hummus, a small serving of some leftover... it's not much work.


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## Lillypop (Sep 3, 2009)

in the past I have offered food more often (eggs, oatmeal, apples, cow milk or juice plus water at 7am, and a snack like almonds, raisins, slices of homemade bread at 9:30-10:00 as opposed to waiting until 11 for another meal ... and the snack will go largely untouched. They fill their bellies up and their brains are open to nibbling but they aren't actually hungry. My toddler nurses frequently, an average of a good nursing every 3 hours, but he also eats a lot less solid food than the other kids.) water is ALWAYS given on demand (I actually keep cups on the table at all times, refilling as needed, in this crazy heatwave).

And DSS has now gone the total opposite with his eating. Today at breakfast he ate the normal amount (less than his usual, but he was sick for a few days and eating minimally then) and his morning snack wasn't touched. Lunch a few hours later was 1/2 a banana, chocolate milk (a big treat!). He refused chicken strips with ketchup (usually loves that), green beans, and even his cookie (all whole grain and healthful but still tasty). He had two episodes of what my older DSS referred to as "being frozen" where he just sat there, staring, like totally zoned out, wouldn't respond to his name, or to questions of "are you hungry? are you done? what's up?" etc. If I jiggled his arm he wailed, like he was upset that I jogged him back to reality. Very, very odd. I don't know what to make of it. Oh, also, I offered him the 2nd half of his banana ... and I cut it up (you have to with him, or he'll put the entire 1/2 in his mouth and gag on it), and it was like he got really mad that I did that and just stared at his plate.

And at dinner tonight, he was presented with a bowl of soup (tomato/veggie/barley), half a corn on the cob, and a slice of homemade bread. He said "I don't like it" to the soup (didn't even try it, had this soup before and loved it, as everyone else scarfed it down), nibbled the corn and then said "I don't like it" with tears in his eyes (typically LOVES it), and ate a 1" by 3" portion of his bread, drank most of his water, and then said he was done. Came back in 5 minutes with an "I'm hungry", we welcomed him to the table (usually we don't let them come back after declaring they're done and getting down ... but with him being off and so underweight we just want him to EAT) but he just sat there, looked at the food, and then got very sad, made the almost crying face, and reached to DP for a hug. :-( He was excited for food during grace, said "AMEN!" and then just sat there and stared at it...


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## 2cutiekitties (Dec 3, 2006)

Take him to the doctor and demand blood work. You might have to go to the hospital for that.

Last night I researched leg cramps for DS who is having them and everything I read said if they have a fever or cannot walk then take them to the doctor. We settled on it being growing pains for Ds.


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## Lillypop (Sep 3, 2009)

we did go to the doctor on Wednesday afternoon ... still waiting for that phone call from neurology (that was the vague name they gave me ... is it a neuro consult from the hospital? a neuro-specialist for peds?) to schedule an evaluation. he is walking better and it's hard for me to convince DP that this is a SERIOUS issue, not just him being sick, or being weak, or tired, or lazy. our relationship is definitely strained dealing with all of this.

and DSS walks really wide-legged now. Like as if he's astride a horse, and can't really use his joints properly. I need to take a video of him walking/moving around and post it. I'll try to do that tomorrow.


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## Fuamami (Mar 16, 2005)

Quote:


Originally Posted by *Lillypop* 
we did go to the doctor on Wednesday afternoon ... still waiting for that phone call from neurology (that was the vague name they gave me ... is it a neuro consult from the hospital? a neuro-specialist for peds?) to schedule an evaluation. he is walking better and it's hard for me to convince DP that this is a SERIOUS issue, not just him being sick, or being weak, or tired, or lazy. our relationship is definitely strained dealing with all of this.

and DSS walks really wide-legged now. Like as if he's astride a horse, and can't really use his joints properly. I need to take a video of him walking/moving around and post it. I'll try to do that tomorrow.

Whoa. It sounds like his health is deteriorating. Did you ask about diabetes? What about cystic fibrosis?

This doesn't sound right. I would get back in there and make them figure out what's going on.


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## Lillypop (Sep 3, 2009)

That's it, I'm calling the ped again tomorrow. I want a full blood workup, urinalysis. at the minimum. and the neuro eval needs to happen NOW.

could it be MS? the symptoms fit. they really fit, actually.

carnitine deficiency? fits, too.

Why is the doctor not more concerned? Why wouldn't he order a blood workup immediately???

The zoning out episodes are frightening. You have to snap him back to reality, as if he's on another planet, just staring blankly. Like he can't hear, or focus.

diabetes ... they didn't check his blood sugar (why the heck not?!)

cystic fibrosis ... he has NO respiratory symptoms, no infections (but not that they checked for any infections, although I know he has no cough/wheezing) ... but all the other CF symptoms are a match.


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## peaceful_mama (May 27, 2005)

ohhhhhh







the poor babe.....

You need a different doc. I switched because I was just plain sick of my kids not being able to get in to our family practice doc most of the time, plus there were two incidents with my kids (and I *am* pretty natural-minded, not test-happy, all that stuff) where I really feel she should've taken things more seriously---one was my 4-5 week old daughter with severe cough, much worse at night---she ended up eventually in the ER and spending six days in the hospital, on the 6th day they FINALLY got the whooping cough test back and that is what it was! (I KNOW, it seemed like 'just a cold' in some ways but I kept calling back every day saying "this is just so bad, I spent the WHOLE NIGHT sitting up with her...") NO tests were done, nothing, till I brought her to the ER because she was having these coughing spells where her eyes rolled back and lips turned blue...SCARY. (it went on for a couple weeks gradually getting worse)

Those "staring into space" spells sound like a seizure. I don't know the technical term, but 'absence seizure'--they don't fall down and go unconscious stuff like that, but it's described a lot like what you are saying--child staring into space, hard to snap back into 'reality.'
If this happened to my child, I would absolutely 100% get them to a doctor and a referral to a neuro ASAP.

The food thing....is he still probably not feeling well? *I* have a sinus thing this week and the past 2 days, lots of things I usually like just plain did not sound good....even to the point of eating a little of it and it just not being 'right' i guess you could say. That sounds like still-sick kid.

Anyway, I would get him to a doc, ASAP. if you have to go to an acute care clinic or something to get a 2nd opinion, I would. I'd keep going until you find someone that agrees that this is not 'normal' because, well, I think you are right and it's just plain NOT normal.


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## Lillypop (Sep 3, 2009)

absence seizures ... that's it. dr's office opens at 8. calling then.


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## frogautumn (May 24, 2007)

Agree with pp's that whatever is going on, it is not normal. Trust your instincts and get to the bottom of this one--if it means switching doctors, going to the hospital, etc...

Can I ask a question that hasn't been asked? Where is his biomom in all of this? It sounds like you've been his primary caregiver for the past 6 months...is there more to the story as to why he's not living with her? Obviously he's having some issues with his physical health, but I can't help but wonder if there's a psychological component too...
If there is a healthy relationship with the biomom, does she have any insights about his issues?

Please keep us posted! My thoughts are with this sweet little boy...


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## ~Charlie's~Angel~ (Mar 17, 2008)

OP, my son is your DSS's age, and I cannot even imagine.

The fact that his older brother has a term for these possible seizures really bothers me. How long have they been happening to this poor baby??????

Please update soon!


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## ~Charlie's~Angel~ (Mar 17, 2008)

Quote:


Originally Posted by *frogautumn* 
Agree with pp's that whatever is going on, it is not normal. Trust your instincts and get to the bottom of this one--if it means switching doctors, going to the hospital, etc...

*Can I ask a question that hasn't been asked? Where is his biomom in all of this? It sounds like you've been his primary caregiver for the past 6 months...is there more to the story as to why he's not living with her? Obviously he's having some issues with his physical health, but I can't help but wonder if there's a psychological component too...
If there is a healthy relationship with the biomom, does she have any insights about his issues?*
Please keep us posted! My thoughts are with this sweet little boy...

I was wondering ALL of this, but was afraid to pry.


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## crunchy_mommy (Mar 29, 2009)

Yes DEMAND answers TODAY. He seems to be rapidly deteriorating, I wouldn't wait for them to 'fit you in' etc. he needs a proper evaluation NOW. I'll be praying for him.


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## beanma (Jan 6, 2002)

I was also going to say the zoning out sounds like seizures. The proper term is "petit mal" as opposed to "grand mal" which is the falling down on the floor kind. My best friend in childhood had epilepsy so I learned a lot from her. She didn't have any of the weakness issues you're looking at, though, so might not be connected.

Have you posted in Special Needs? I really would. The moms there have kids with a variety of special needs, some profound and some as mild as a little sensory stuff. I think they could really help you navigate and advocate for the necessary tests. It really sounds like he at least has something going on, even if it's just SPD (sensory processing disorder). I hope that's all it is, plus being a little sick. Really, post in Special Needs and ask the moms over there if his symptoms match up with anything they can think of. There are several things I would wonder about, but I don't have any experience with them and those moms do. I think you could save yourself a lot of time and maybe some worry by getting pointed in the right direction. Asking your doctor is great and appropriate, of course, but it's even better to also ask thousands of other moms who have seen a variety of other conditions, too.

There's also a condition with a virus where it can affect the legs. It's called "toxic synovitis" but it usually only lasts a week or two. http://kidshealth.org/parent/infecti...synovitis.html


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## showurhorns (Feb 5, 2010)

Meanwhile you are waiting for answers try Epsom Salt baths. My DD has Defensive Sensory Processing Disorder and it is working wonders on many levels. It is also used with Autism. Not that think it is either at this moment it sounds like something else is going on. Your original post although sounds a lot like my DD. She has the opposite problem with feeding she has oral aversions so she avoids foods.

I use 1 cup Epsom salt to her bath at least 3 times a week.Soaking no longer than 20 min. Often I join her as it needs to cover entire body and she is only 20 months so it is a safety issue.

Praying for your little guy...It sounds so scary.

[URL="http://www.speech-express.com/boards/viewtopic.php?t=491" describes why it is beneficial. I am sure MDO has info too.


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## Theoretica (Feb 2, 2008)




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## Super~Single~Mama (Sep 23, 2008)

I'm thinking about you guys, keep us all updated


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## MamatoA (Oct 28, 2009)

Friend, I just saw this thread. I'm really glad that you are being proactive about this. I am not a doctor but here's my two-cents....

the zoning out sounds like it could be small seizures called "absence seizures." And there is a pretty substancial comorbidity rate between eplilepsy and developmental disabilities, which it sounds like your DSS may also be experiencing.

There is a list of possible disorders/diseases on page 69 of this google book. It's under table 3-4 "Etiologies of mental retardation and eplipsy" I have not researched all these so I don't know if the symptoms and signs fit what you are seeing. There are just some ideas for you to research and/or present to his medical team.

http://books.google.com/books?id=kGx...page&q&f=false


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## CookAMH (Jun 2, 2008)

I do not have any experience with this but want to offer support and though your DH isn't on board, you must persist with medical care. It must be hard to do so and not get answers. If this doc does not satisfy, post on your local tribe for a recommendation that hopefully is in your insurance. Please persist, it certainly sounds like things are not right with your boy.


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## Latte Mama (Aug 25, 2009)

Just reading this thread now, hope to get an update soon and that your DSS is getting help!


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## Anastasiya (Jun 13, 2006)

I agree that I would get him in NOW. I would have him admitted, personally. He sounds like he is very much deteriorating.









Has he had a CT scan or MRI to rule out a brain tumor?

I check for updates constantly....this boy is really weighing on my heart.


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## Lillypop (Sep 3, 2009)

His biological mom moved away in December. She took care of the kids every day, then she left to live two states away. They've seen her less than ten times since then. She is moving up to live a few miles from us this weekend, so they'll see her on a regular basis, two-four days a week.

She's got her own issues, but she does love the kids. She and DP are divorced now. (we're waiting on my divorce and our annulments to allow us to get married in the church).

Oh, and after 3 phone calls today we have a neuro consult appointment Monday afternoon. biomom has the kids then and will be taking him to the appt (she's in denial of his problems, doesn't think anything's wrong, but I'll be sending along a list of concerns for the doctor, as long as a request for bloodwork).


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## InMediasRes (May 18, 2009)

Just read this today, and I have to send a







to you and your poor baby. We'll be keeping you in our thoughts.

I agree with PP on a few points: it does sound like he's having absense seizures; the oral sensory seeking, lethargy and hypotonia sound a lot like SPD, but the not gaining weight sounds like a metabolic issue. I agree that he needs to be seen NOW.

I'm sure you're doing everything you can. My son is on track for growth, but he does a lot of the same things you mention with food, stuffing his mouth, asking for food or water ALL THE TIME, eating when he's not hungry and not stopping, chewing on his fingers, etc. For a long time around 2.5, I was really considering SPD. We have no formal diagnosis, but I still consider him mildly special needs. Go over to special needs board, they can really be supportive, Mama. Also, having a DH who is even MONTHS behind and seriously in denial seems to be pretty common amongst SN families.

1000







s


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## Anastasiya (Jun 13, 2006)

Quote:


Originally Posted by *Anastasiya* 
I agree that I would get him in NOW. I would have him admitted, personally. He sounds like he is very much deteriorating.









Has he had a CT scan or MRI to rule out a brain tumor?

I check for updates constantly....this boy is really weighing on my heart.

I just wanted to repeat this...the seizures, the lethargy, the weakness, problems swallowing, no weight gain and the fact that he doesn't walk well, cannot stand on one leg and cannot jump worry me.

Praying, praying and praying!


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## confustication (Mar 18, 2006)

Can you try to attend the appointment as well? It seems like it would be a lot more useful to the neuro than having a sometimes absent biomom there. She may love and care for him a lot, but she hasn't been there as much lately adn can't relate all that's going on as specifically as you can.


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## DevaMajka (Jul 4, 2005)

Just read this







Keep us updated, ok? I hope things get figured out soon.


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## Lillypop (Sep 3, 2009)

We have decided that I will go to the appointment with him. She doesn't really understand that there is a problem, or that he is behind/has issues. And we haven't told her about the possibility of the absence seizures (she wouldn't understand that you can have seizures but not have convulsions).

His eating is back to his normal ... the shaking as he sits down and starts eating, consuming a huge amount of food, etc.

Tomorrow I'm going to cut out dairy, gluten, and soy from his diet if we don't get any answers from the neurologist (can't hurt, might help). The early intervention people have 30 days to contact me, so we could be waiting a while on them.


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## rightkindofme (Apr 14, 2008)

I'm really glad you are going. How could she possibly give the doctor all the information you can when she hasn't seen him much lately?

He's very lucky to have you.


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## Super~Single~Mama (Sep 23, 2008)

Quote:


Originally Posted by *rightkindofme* 
He's very lucky to have you.

















He's a VERY lucky little guy!! I hope you find something out tomorrow, I'll be checking for updates and thinking about you and your little guy.


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## Flower of Bliss (Jun 13, 2006)

Thinking of you and your little one today. I hope the appointment went well. Sending


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## ~Charlie's~Angel~ (Mar 17, 2008)

Update?


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## Lillypop (Sep 3, 2009)

http://www.mothering.com/discussions....php?t=1242301

updates here. I can't keep up with two threads.


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