# At the end of our rope...



## mum2be (Jul 6, 2005)

We really don't know what to do anymore. Dd is 4.5 months now and sleeps terribly. I know this forum gets a lot of these posts, but we are seriously to the point where we have to do SOMETHING in order to get through another day. We have tried every non-CIO thing and nothing is working.

She is high-needs and extremely fussy since day one. She had episodes of screaming/crying since she was born, which we decided it was allergies (I'm on an extremely limited diet...), but although that has lessened the screaming episodes, it has not helped anything else.

For the first 2 months, she just would not sleep. She didn't sleep at night, she didn't sleep much during the day, and the only way we could get her to sleep and to stay asleep was to bounce her on the exercise ball or walk around with her. The second we stopped, she was awake, no matter how tired she was to begin with.

So around 3 months it slowly started to get better with the night sleeping...meaning she actually attempted to sleep at night. We cosleep, although dh is in another bed because dd is such a light sleeper that anything wakes her up. I have to stay stiff as a board in order to not wake her.

She wakes frequently. I'm talking every hour or less sometimes. She never seems to get in a deep sleep. I started putting her to bed earlier, usually around 7 p.m. She'll nurse down, but then wake up about 8 times until I join her at 9 p.m. I have to keep running into the room to put her to sleep. Then she sleeps for the only 2 hour chunk. Sometimes I have to hold her upright in the crook of my arm (i do this about 50% of the night most nights) to get her to sleep longer.

She's started staying awake from about 2 or 3 a.m. till about 4 or 5 a.m. She fusses and cries because I won't get up and play.

When she wakes up she usually nurses or won't fall back to sleep. She takes a paci now, and sometimes that will help her fall back asleep. However, she is insanely restless all night long. She squirms, wakes herself up, kicks me, hits me, etc.

Let's just cut to the chase here...I'm getting a good 3-4 hours of TOTAL sleep a night and have been for the past 4.5 months. I CAN NOT FUNCTION ON THIS AMOUNT OF SLEEP.

I am angry, depressed, short with her, no fun to be around, mean to dh, etc. because I am so insanely tired. I can't be the loving, fun mother I want to be because I can barely function. I end up actually yelling at her during the day







: You have no idea how horrible that makes me feel! I just can't even think. She needs to be in arms 100% of the time and still fusses until I get her just right. I am exhausted!!!!

She doesn't nap during the day, except for 3, 20 minute naps on me. I can't sleep during those. I have to walk her around while she beats her hands into my chest and kicks me, totally fighting the sleep she needs and wants, until she falls asleep, then I slowly and carefully sit down to not wake her. If I change her position she is up right away.

Now, I got 2 hours of total sleep last night, so I may sound a bit angry in this post. But I can not take this anymore. Do NOT tell me that she'll sleep when she needs to sleep, because she doesn't. She is NOT pleasant during the day and is always tired and sleepy, but won't sleep long enough to feel rested. She is EXTREMELY fussy because of this. We had 3 good nights sleep in a row a couple of weeks ago and she was a totally different baby. TOTALLY! I've been wracking my brain to figure out what was different (I keep a food log, a nap log, and nothing was different.).

A friend gave us the book my Weissbluth, which I know most of you hate on here. I am anti-CIO, but can you understand the fact that nothing is working now and we need something to change or I'll end up having a mental breakdown. (Not even joking...) He has a chapter on extremely fussy/colicky babies and why they can't sleep after 4 months and what it does to them, etc. He says it can set them up for permanent sleep problems (I do believe this...) and difficult temperments as they get older (she already has a VERY DIFFICULT temperment from lack of sleep.)

So, really, put yourself in our position. Don't tell me you'd wait it out and hope things will get better. It's getting worse. We've seen a ND, chiro, CST, allergy specialist, gastroenterologist, PED, kinesiologist, etc. and nothing has worked. What would you do?

BTW: she won't go to dh...no matter how much we try. She screams and cries. He can not comfort her or put her to sleep...so it's pretty much me and only me.


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## alegna (Jan 14, 2003)

Have you tried an elimination diet? I'm wondering if food could be the culprit here. I'd try getting rid of dairy first and see if that helps.

good luck!

-Angela


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *alegna* 
Have you tried an elimination diet? I'm wondering if food could be the culprit here. I'd try getting rid of dairy first and see if that helps.

good luck!

-Angela

yes. i stated above that i am on an extremely limited diet...5 veggies, 3 exotic meats, 1 fruit, rice and potatoes.


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## D_McG (Jun 12, 2006)

Does she have other allergy symptoms? (mucousy stool etc)


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *D_McG* 
Does she have other allergy symptoms? (mucousy stool etc)

yes...

we've seen many dr.s about this already. the symptoms change depending on what "bad" food i've eaten (mucus in stools, reflux, mucus spit-ups, gas, etc.)


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## D_McG (Jun 12, 2006)

What does your gastro suggest - neocate or something like that?







:

Have you tried a total elimination diet? (just turkey and rice I think is the most common starting point).

ETA - I understand you are on a limited diet. I'm wondering if it should be limited further. Or I must admit I would consider neocate if I didn't think it could be handled any other way. (I have a dairy and soy allergic baby but that is easy to handle).


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## mum2be (Jul 6, 2005)

yes...she reacts to turkey.

i appreciate the advice, but i've done all i can as far as the allergies.


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## D_McG (Jun 12, 2006)

I guess my question is are you open to weaning to a specialized formula.

ETA: I actually mean more like a trial. That was my own plan if dairy and soy did not work I was going to pump for a week and try a formula. Not a popular suggestion around here but I thought I'd mention it.


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *D_McG* 
I guess my question is are you open to weaning to a specialized formula.

o, i see. well, i've posted about that on mdc and people felt it would be a bad idea. she won't take a bottle now...

i'm really torn on this one. i have been able to add more into my diet, and she no longer screams in pain, but i still wonder if the sleep issues and gasiness at night is caused from food. What if she can't tolerate formula? What if my milk dries up and we are worse off than before?

So there are a lot of things we have to consider and not knowing if it will work or not it scary!!


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## D_McG (Jun 12, 2006)

It's a tough call really. I'm someone who has to have 10 contingency plans and that was one of mine. In online support communities I 'know' 2 people who tried it. For one it was like a miracle cure and they haven't looked back. For the other her LO wouldn't take it at all and she finally resolved things with her diet (I think she has 12 things she can eat. One of which is olive oil).


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## alegna (Jan 14, 2003)

Sorry- I didn't read closely enough!

It really sounds like something else medical is going on here. Has she had the extended newborn screening done? Any other testing? Metabolic testing?

I would guess the sleeping is a symptom of the bigger issue.

-Angela


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## CarolynnMarilynn (Jun 3, 2004)

Has she been treated for the reflux? It can be severe and so painful. That is what I thought when I read your post. I would rather try an anti-reflux drug than consider weaning. Have you tried the reflux comfort things?


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## alegna (Jan 14, 2003)

Other thoughts:

Is she hitting milestones? Has she been vaccinated? Is there anything else unusual in her history?

good luck!

-Angela


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## Siana (Jun 21, 2004)

Mama, I *really* feel for you (hug). I think the sleep issues are just an indicator of a much bigger underlying issue or issue. I think you know this too, but the stress and sleep deprivation are zapping your life force, and all you want is some much needed restful sleep!

I wonder if your baby is reacting to something else the HCPs haven't thought of. Some babies for instance can not process lactose from birth (their gut doesn't have the ability to produce lactase). I would seriously consider talking with LLL leaders, and ask for a referal to their Professional Liason Department (I believe that's what it's called).

My little one was very much like what your DD seems, though I didn't notice too many symptoms in the very early weeks (for about a month). That could have been only due to the fact that I was so overwhelmed by all the changes another baby brought however!

I do understand the sheer exhaistion. I was fortunate that DP took parental leave for 10 months after DS's birth so we could cope better (we just pinched pennies to live). Had it not been for that, I would have lost all my marbles. Can you have anyone you trust to come and help you out whenever they can? You seriously need a break, if not from caring for baby 24-7, then from at least some of the other tasks you probably have to do.

For my case, after my DS got signisficantly better, I found out my intestines/gut was a mess







I was paying no attention to the needs of my own body, and I believe the stress, along with restrictive diets really did a number on me. I have a damaged gut, and am struggling to heal it. My DS isn't totally fine yet either, but I've been trying to focus on us *both* to beat this thing.

Anyway, I need to go now, but I wish you the best, and will be thinking of other tips that might help you.


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## kreyno4 (May 10, 2006)

Poor mama!




























That sounds very hard. I really feel for you! You have tried so many things! It must be soooooooo frustrating.

As the mom of another not-great-sleeper, I wanted to give you some links of things I started reading around the time my daughter was around the age yours is now:

Moxie's Quick and Dirty on Sleep
Moxie's explanation of 4 month sleep regression
Kellymom's article on why 4 month olds don't like to sleep

I also had the Weissbluth book because of the so-called "helpful info on babies' sleep" (I planned to ignore the CIO parts) and it had me running scared that my baby would never develop normally if she didn't start sleeping more/better, in the way that he dicated in his book.

Knowing more now, though, it just honestly does not make sense to me that there is only one possible sleeping pattern for babies, as he suggests (and I mean the number of hours and frequency of sleep, not the ways to go to sleep). There is variation for babies in weight, length, head circumfrance, poop frequency, when they start to crawl or walk... Why can't there be more variation in terms of sleep, and still have it be normal? In fact it is very biologically normal for babies to sleep lightly, wake frequently, and sleep for short times!

I also think that book holds up CIO as this awesome easy solution that works great (and maybe some people are only held back from doing it by those psychological consequences which are well-documented on this board). But CIO is not just a magic pill with bad side effects! It does *not* always "work", it often "has to be" repeated over and over after a child is teething, sick or whatever. For example a friend of mine who does CIO tells me she hasn't been sleeping well because her baby keeps waking up all night and she can hear him on the monitor. How is that helping anyone get more sleep? Anyway I am asking you to please not believe the hype that CIO is this great solution to all your problems!

OK gotta finish up because my baby is waking up. She now takes all her naps in the carrier. If you are not doing that, I recommend it... a wrap works for us but you could also try a mei tai or ergo. Easier and more comfy than just holding in arms.

Another piece of unsolicited advice is to stop keeping track of how often she wakes, how little she sleeps, etc. When I kept track, it only made me more crazy/obsessive. I am not saying this will help her sleep or that you should stop trying to help her sleep, I believe many babies like this do need help getting to sleep and won't just "sleep when they are tired". But not looking at the clock may help you feel better.

If all else fails, try telling yourself that babies that don't sleep are smarter than average







OK, before everyone with good-sleeping babies flames me, that is not really true, but we mamas of bad sleepers have to do what we gotta do to feel better!


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## NamastePlatypus (Jan 22, 2007)

hugs to you! I could have writtian you post almost two years ago. I know how you feel, BTDT, and it is hard. We are still there and it has gotten a little better now that he has all his teeth but we are still no where near going all night. I would scream would people would say this to would pass because I am still waiting. It is amazing how your body can adjust. I need at least ten hours and have not gotten that since I was about7 monthes preg. I have gotten to the point where I can handle it better but it still hits me harder on somedays more than others. four and half monthes is really little still.
Do you have a sling? I still wear my babe day and night and sometimes that helps and I still nurse on demand but when you have a HN's babe, life is hell and it seems like there is no end in sight. I still wake up feeling like you. Have you had her checked for anything medical? She could be in pain somewhere. If she has GERD than carrring her in a mei tai or wrap can help because she is more upright than a ring sling.
Have you tried the elimination diet? I did it four about six monthes and no change except I lost alot of baby weight tha was not coming off before so that was a plus









When he had gotten to around a year or so and still waking every 20-45 min they admited him for a sleep study and has traumitizing and hellish as it was they found that he has a problem transtitoning from light to deep to light to deep. Ususaly people can flow thru them effortlessly but for whatever reason his little brain has trouble with that and there is nothing we can do but help him thru it. That he will grow out of it one day, not soon. It could take until adolecents









I am sorry if that is not what you wanted to hear







: PLEASE pm me if you need an ear or some advice. I know how hard it is when everyone elses babes are sleeping and happy and wonderful and you are battling happiness with this wonderful gift that you struggle loving sometimes, even though you know it sounds horriable and you would never say it, I know how your mindset changes and how hard and ugly that is.I know how you feel so please come to me if you need to talk. I will be thnking about you all.


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## alegna (Jan 14, 2003)

Something else that I think is important is- you need a break. Can dh take a little run at night where he's in charge and you can sleep? (maybe he's even in charge of latching baby on as needed) Or can you have a friend come over during the day or a baby sitter or even mother's helper so you can get even an hour's nap? Really, you need a break- so that you DON'T break









Maybe dh or another loving caregiver can take her for a long walk or drive just so you can re-claim some sanity.

good luck.

-Angela


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## TxMominCT (Nov 23, 2006)

I feel you Mama! DD was/is not a good sleeper. Luckily, she was never too fussy or crying. She just never. would. sleep. Now that she's older, we've started some of the no crying sleep solution stuff. Mainly adding a bit more of a routine to her life and that's helped, but she's teething again so







. I wish I could offer some good advice! Have you tried swaddling? Also I'd see if I could glean any new info from the NCSS if you haven't already. It's hard enough to get no sleep with a happy baby, I can't imagaine if DD cried all the time too!!!


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## mum2be (Jul 6, 2005)

Okay, where to start?

My mother is up for the day to help out and right now I am in the bedroom, and dd is out with grammie SCREAMING her head off. She does this whenever someone else is holding her. I need a break! What can I do? I can't sleep because all I hear is screaming even though I can put the white noise machine on and put in ear plugs. Dh yells at me when I go out because he thinks I am "training" her to be this way by taking her back whenever she cries for more than 5-10 minutes in someone else's arms.

They're trying to give her a bottle which she has never taken. She just gets more frustrated...

To answer some questions:

-No, she has never been vaccinated.
-She's had a stool sample which didn't show anything abnormal (but then I was eating "safe" foods while it was taken.)
-She's never had any blood work done (couldn't bring myself to do it) but had the heel prick test when she was a few days old
-If it was a 4 month milestone thing, why would it be going on for 4.5 months? Yes, it has gotten worse recently, but it goes in and out on a weekly basis.

I'm just at a loss. We've read every no-cry book out there. I don't think that CIO is a magic fix all, but I wonder if she really needs to be able to fall asleep on her own. For anyone who has the book by Weissbluth, there is a story in there by a father under the fussy baby part. The way he describes it is EXACTLY what we are going through. He did say that CIO helped.

Just know that I am sooooo incredibly anti-CIO, wouldn't have even thought of it until now. I don't think I could bring myself to do it, but when I reach the point that I am yelling at her and pissy at everyone else, I have to wonder. I have to wonder if we should give it a go, just because NOTHING else has worked. I have AP'ed all the way and it seems like everything I have done is backfiring. No fair...

I can't hold her for naps anymore. I do it all day long and she sleeps for 20 minutes and then her eyes magically POP right open. It's insane. My back kills, my arms hurt, I've tried the sling, the mei tai, etc. but she hates being confined.

She hates swaddling. Did from day one. No matter how many times we tried it.

Dh set up the baby hammock (which I spent days making while pregnant, but she hated and was never in







) in her room and is VERY upset with me that I won't try the CIO approach. He says that after reading Weissbluth's book, it's the only one that ever made logical sense to him. I think in another couple of nights, he will be forcing me to try it. He has to drive an hour to work everyday and almost goes off the road because he's so tired. We just can't do this anymore...

Dd is now quiet. I am going to try to get some rest.


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## srain (Nov 26, 2001)

I had a baby like this. People kept saying things would get better after 2 months- then 4 months- then 6 months- then 10 months- and it never did. At about 18 months, he stopped crying all the time (though he's still crazy-high-needs and he's now SIX) but he didn't even begin to think about sleeping for more than a two hour stretch 'til after he was three. He also had digestive issues, and we saw all the doctors too, and alternative medicine folks, but nothing helped.

Which may not want to be something you wanted to hear, but my point was to say that I DON'T think you should wait-because-she'll-outgrow-it or whatever. You can't live like that and be a good parent.

A few ideas that you've probably already tried, but just in case:

have her sleep on her stomach
try swaddling even though she protests; if you're able to get her to sleep by dancing with her, whatever after she's swaddled, it might help her stay asleep
sleep separately so you don't wake each other up as much
take turns with your husband- he's on baby-call from 8-1; you're on from 1-6. If she cries with your husband, she's still being comforted by someone who loves her, and you need the rest to survive.

I tried a modified CIO with my son when he was 10 months old and my husband and I were both hallucinating during the day from sleep deprivation. And we put ourselves through hell and it didn't work. I suspect it doesn't usually work on kids who are all-around sad much of the time.

E-mail me if you want someone to commiserate with since I don't always check back here. Some of us know how you feel.


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## lotsofkids (Aug 25, 2006)

Have you read The Happiest Baby On The Block? I would try swaddling her. Really, really tight. It sounds to me like she has an extremely sensitive Moro Reflex and she is startling too much to sleep. She might greatly benefit from swaddling. This book saved my life with one of my DDs. You do the 5 S's.

Swaddling
Sucking
Side (laying on side)
Side to side swaying
Shushing (this is where you shush very loudly in their ear to mimic the sound of the womb)

I could generally calm my high needs baby down in about 10 minutes using these techniques. But definitely try swaddling.

ETA: I just read your last post that said your DD hates swaddling. So did mine. She would fight sleep with every inch of her body that's why she didn't like it. I swaddled her anyway and she would finally succumb to sleep and sleep like a log.


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *lotsofkids* 
Have you read The Happiest Baby On The Block? I would try swaddling her. Really, really tight. It sounds to me like she has an extremely sensitive Moro Reflex and she is startling too much to sleep. She might greatly benefit from swaddling. This book saved my life with one of my DDs. You do the 5 S's.

Swaddling
Sucking
Side (laying on side)
Side to side swaying
Shushing (this is where you shush very loudly in their ear to mimic the sound of the womb)

I could generally calm my high needs baby down in about 10 minutes using these techniques. But definitely try swaddling.

ETA: I just read your last post that said your DD hates swaddling. So did mine. She would fight sleep with every inch of her body that's why she didn't like it. I swaddled her anyway and she would finally succumb to sleep and sleep like a log.


Yes. I will try it again I guess. She hates being confined. I don't know why she wakes up after falling asleep. She does not startle herself, there are no noises, etc. Her eyes just pop open. It's so odd...


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## mommy2abigail (Aug 20, 2005)

Oh my, I could have written your post. I know exactly how you feel. I felt like the worst mother, because I was so sleep deprived that I would freak out at dd.







: She was champion of the 20 minute naps. NEVER did she sleep longer. I tried everything. Car rides (she screamed) nursing, patting, rocking, shushing, white noise, no noise, hot, cold, tummy, back, side, on mommy, off mommy, alone, with me, sling, wrap, crib, bed. EVERYTHING. Nothing made her sleep better. I was hallucinating and was fearful of what I'd do. I did let her cry once, for 3 minnutes. It was horrible, and I looked at the clock the entire time. I begged dh not to go to work everyday. It was really awful. I swore off any more children (I have since then changed my mind







) I did do the eliminations diet. I ate nothing but rice, pears, turkey, and water for weeks on end. I went from a size 8 to a size 0. I am 5'10', so a size 0 is NOT pretty. I really can't tell you that anything we did helped. She was healthy, not vaccinated, nothing could explain her sleep disturbances. I can tell you that she now, at 22 months, sleeps for 30-60 minutes at a time and will go back to sleep easily if she wakes from her nap early. And she wakes 2-3x per night, which is a dream compared to before. I did have to partially nightwean her at 20 months, which was not my 'ideal' plan, but I was not healthy. My advice to you is get out of the house everyday, and try to have an hour to yourself (as in, not in the same house as dd) I didn't do that, and I am kicking myself for it. She would have been so much better off taking a break from her stressed out, sleep deprived, impatient mama. Even if your dh or mom or a trusted friend takes her on a walk and you take a nap or bath or read or whatever. Or YOu take a walk with out her. Or go to the mall and have dh take her around while you walk around with a cup or coffee or tea. Please pm me if you ever want to talk. Really I can totally relate.


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## mommystinch (May 18, 2004)

I so wish I had words of wisdom for you. I just had to write and let you know you aren't alone. My dd was exactly like yours. Horrible sleeper from the first night with us... I would spend several hours getting her to take a nap, and she'd be awake before I even finished going to the bathroom or making lunch. I was always so angry at dh because I had to go nurse her back to sleep every ten to fifteen minutes until I went to bed. Then, like your dd, she still woke up frequently at night. I hope you find something that works. I know how hard it can be to be in your shoes. Sometimes we have to think about the fact that mom and dad aren't good parents unless they have been taken care of as well.


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## Justmee (Jun 6, 2005)

Just another big









Have you tried a swing? Rivka woudl only sleep in the swing for a while from about 3 - 6 months. I had to leave it on. She didn't like to be held and she didn't like the confinement of slings / wraps, but she loved the swing.

Sorry I don't have any better advice. She's still pretty high needs but nothing like when she was under 1.


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## North_Of_60 (May 30, 2006)

Quote:


Originally Posted by *mum2be* 

A friend gave us the book my Weissbluth, which I know most of you hate on here. I am anti-CIO, but can you understand the fact that nothing is working now and we need something to change or I'll end up having a mental breakdown. (Not even joking...) He has a chapter on extremely fussy/colicky babies and why they can't sleep after 4 months and what it does to them, etc. He says it can set them up for permanent sleep problems (I do believe this...) and difficult temperments as they get older (she already has a VERY DIFFICULT temperment from lack of sleep.)


For us this was not the case. Being sleep deprived and high needs never started poor sleeping habits. It has only gotten better. She hit the 4 month mark and all hell broke loose. Literally. I was feeling the EXACT same way you did. Plus, she had reflux that was undiagnosed. The best thing I did was get her on zantac. The second best thing I did was learn about infant stress and crying in arms.

The sooner I stopped trying to "cure" her crying, and just supported her through what ever stress relief she needed to do, the better things got.

Around about 7 months things started to get better, nap wise. Meaning, I didn't have to HOLD her for her naps (which were never longer then 30 minutes) anymore. I could actually lay down with her and she'd fall asleep. Then around 9 months I was able to roll away she'd actually STAY asleep. Bliss!!

Now that we have naps sorted out, I've been working on helping her sleep better at night. I started letting her sleep on her tummy. And like I said above, when I stopped trying to "fix" her sleep problems and just let her get it out of her system, she slept well. Great actually. She is sleeping 3-5 hour stretches now!

I have never abandoned her, I have never denied her the breast, and I never did it to "teach" her anything. Three things I will NEVER do. But I firmly believe that babies, just like adults, sometimes need to "let it out". I was always there for her, and if there was something that I thought would help, I tried, but when it didn't, I just held her assured her that it was Ok to let it all out.

I think we sometimes get wrapped up in trying to prevent crying so much that we inadvertently suppress emotions that are desperate to be expressed, and since they can't speak to us, it only seems natural that sometimes that expression comes out as screaming. I just think it's important to be there for them and to support them through it (something Weissbluth and Ferber encourage against).


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## mommy2abigail (Aug 20, 2005)

:







I really think it was MY stress and fear of ever letting her cry AT ALL that contributed to her stress, and thus her sleeping issues.


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## North_Of_60 (May 30, 2006)

Quote:


Originally Posted by *mommy2abigail* 
I really think it was MY stress and fear of ever letting her cry AT ALL that contributed to her stress, and thus her sleeping issues.

Totally. When I just held her and looked in her eyes and said "tell mama all about, I'm listening", it's like a weight got lifted off my shoulders. I was no longer stressing about how to get her to stop, but instead I was LISTENING to her. It got progessively better from there.


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## gretasmommy (Aug 11, 2002)

Quote:


Originally Posted by *mum2be* 
Yes. I will try it again I guess. She hates being confined. I don't know why she wakes up after falling asleep. She does not startle herself, there are no noises, etc. Her eyes just pop open. It's so odd...

Babies develop sleep onset associations very early - like during pregnancy. They all like to be held to sleep/nurse to sleep. They've been doing both of these things (well, sucking their thumbs instead of nursing!) for months by the time they join us for their first night of sleep on the "outside"!

Your baby is too old now (sleep habits are too ingrained) to just give them up and change how she falls asleep without protest. It sounds like you have exhausted most every option for what else might be wrong. She might be just so fussy and upset because she is awfully overtired and has a raging headache form it - that's how I feel when I am really overtired.

I am going to step aside from what many have advised you here to do. When my dd was close to your dd's age, I was way overtired from suddenly being up nursing far more than I was during the first few months of her life! It seemed crazy, but she was waking a lot more! I decided that neither of us was happy with this, and that I had helped create this problem and as her mom I had to help fix it. So, when she continued to cry to nurse (a million times a night, after months of not nursing at all at night!!!) I would go and hold her, comfort her, but not nurse her - I realzed that she was just wanting to nurse to fall back to sleep - and when her sleep cycle lightened up (as everyones' does) she was looking to nurse back to sleep again. So, I would comfort her until she was calm, put her down into her crib (where she strongly prefered to sleep) and would leave, The moment she cried out again, i was right there, holding and comforting again until she was calm, put her down . . repeat. The first night was awful - about 4 hours of this. Over and over again. The second night was much better, about 20 minutes, and the third night she just woke briefly once. Nothing ever since (illness excluded, but we never went back to the bad times!). And we were all much happier during the days - even G. And I felt as though I was listening to her - she was tired and unhappy. And I *never* let her cry without responding to her. I held her for every second of it - but no bouncing/walking /rocking, as this would be trading one problem for another

I know this is probably not the advice you were thinking you would get, but I just had to try to offer help - I really feel for you all, and remember those foggy sleepy days all too well! Wishing you better nights to come!


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## megansar (Jan 25, 2007)

One thing I wanted to add (and I've bdtd, too - hugs to you mama!), is that when you can, have your mom or dh take her physically out of the house so that you can rest.
My dh would take dd in the stroller or sling OUTSIDE for a walk whenever the weather cooperated so that I could have an hour or so with no crying or baby noise in the house at all. Then I could finally sleep. DD did cry in the stroller for a while, but she'd eventually fall asleep, and in the sling it was even better because dh was holding her. Then, ask your mom or dh NOT to tell you if she cried the whole time, because that will make you feel guilty and the last thing you need is guilt. Just pretend that she slept the whole time they were gone, and cherish the silent alone nap you just had.

Tons of hugs to you - it sucks, I know. We also did a modified sleep thing at about 10 months (see Dr. Jay Gordon's article - can't find the link, sorry, but you can try it when baby is older than 1 year) because both dh and I almost drove into major accidents at different times because we were so hallucinatingly sleep deprived. After that, dd would sleep in a 6 hour chunk at the beginning of the night, which was heaven.

Anyways, more hugs.


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## apple_dumpling (Oct 20, 2004)

mama, I have been in your shoes, and it is tough. And I won't lie... dd is now 2, and her sleep issues haven't gotten a whole lot better. I do get a little more sleep now then I used to when she was a babe, and now that she is more verbal it's a bit easier, but on the whole, she's still the same fussy, clingy to mama, non-sleeping kid that she was 2 years ago!

We never flirted with CIO.. but dd wouldn't go to my DH either. She did seem to take to females a little better, so my mom would actually fly 1300 miles down to our house on occasion to help (and I see you have either your mom or DH's mom helping too... she *is* being taken care of, so sometimes you have to hear her cry knowing that your mom is attending to her. I did.)

We went through pretty much 6 months of ZERO sleep... and that was with dd on medication for reflux (she was dx'ed at 2 weeks because of projectile vomiting and gassiness) We got her a tucker sling (it's a wedge like thing) and put in the bed with us and she slept a little better. For a while she actually slept in one of those swings that rocked sideways, and she slept pretty good in that. Still up every 2 hours or so, but that was 2 hours of sleep that I wasn't getting otherwise, and she would *finally* nap in that thing. I know people don't advocate putting them in the swing, but I was desperate, and she went willingly into it and drifted right off to sleep.

I would strongly encourage you to check out the "healing the gut" thread in health and healing... it sounds like your poor dd has some gut issues (mine certainly does and we are still working on it) It's tough, and some of it will involve you since you are still nursing. FWIW, I had to stop nursing at 13 months in order to take medication, and dd's symptoms really didn't improve all that much. I know she has some allergies, but we are still working on what exactly they are, much as you are.

Plan little goals and activities for youself... having something to look forward to, and having help around were the ONLY two things that got me through that period. I had to have something to look forward to, just so I knew in my own mind that time was progressing... and short term goals, such as a nice dinner with DH while my mom was watching her, or a certain festival that was in town where I could stroll her, or something... looking back, I still don't know how I got through it, but I did, and you will too. If you think reflux might be an issue with her, go back to the doc and pressure them into doing something. I can't tell you how many times they told me "well babies don't sleep" true, but they don't scream 24/7 either, ya know? You are mama and you know when something isn't right... so insist on testing if need be, and do what you need to do for your mental health to get through... I think you'll find you can manage without using CIO


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## eldadeedlit (Jun 22, 2004)

this is a longshot...but is it possible that there is an airborne allergen in your house, like mold? my ds was almost exactly like what you are describing when we lived in this old musty house in albany... but whenever we left, he was much better. when we moved, he got a LOT better. we figured it was the mold. switching to cloth diapers helped too.


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## eldadeedlit (Jun 22, 2004)

oh, also resist cio!! really you will REGRET it if you go that route. we had that book recommended to us by a professor and tried his method for one night and it was absolute hell!!! my ds cried hysterically for literally 5 hrs. we never went down that route again and i feel terrible for doing it. if she is high needs, she probably wouldn't be the type to "fuss" for a few minutes then sleep.

as far as my ds goes, he is 4 now and has been sleeping peacefully and easily now for three years. it gets better!


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## mamaverdi (Apr 5, 2005)

Quote:


Originally Posted by *mum2be* 
So, really, put yourself in our position. Don't tell me you'd wait it out and hope things will get better. It's getting worse. We've seen a ND, chiro, CST, allergy specialist, gastroenterologist, PED, kinesiologist, etc. and nothing has worked. What would you do?


Start with this: www.pediatrix.com Call them up. Get them to send you the screen. You can do it yourself. Then you need a doctor to sign off on it.

Then whether or not it comes back with anything, you need to see a metabolic geneticist. Your child is barely tolerating anything in your diet. You posted before that you were losing weight.

I'm appalled that at the very least your ND and your GI haven't referred you to a metabolic geneticist.

I would also get a sleep study and an EEG.

A half way decent geneticist should know what to order. I can refer you to one in Boston and one in Arkansas if you can travel to those places. I believe you are in WA.

You are going to need to get blood and urine run. I know it hurts her, but it's going to hurt her more all of this being untreated.

Stool samples are NOT going to tell you what is going on with this level of extreme.


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## megincl (Sep 10, 2002)

I'm so glad Mamaverdi came on here to reply. I was going to suggest that you post over in the special needs forum to get some wisdom over there. I think that what you are describing goes far beyond "regular" dietary and sleep issues (from which we suffer here -- I feel some of your pain, but never that bad -- super duper hugs to you!!!!!!!!!). MV is the guru on this. Do what she says (I've followed her advice on other threads). You might still want to post on the SN forum to get even more wisdom.

I wish you and your family all of the strength that it takes to get through this. And hey, if you come to Boston for testing or whatever, I'm happy to help out -- I'm a student and have flexible days. Just let me know. Really! (I can hold a screaming baby for a long time with a good amount of calm...)

be well,
megin


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## ChristyMarie (May 31, 2006)

I couldn't read this and not respond. Just wanted to give you a (((hug))) - you've received lot of great advice, I really hope some of it helps.


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## wendy1221 (Feb 9, 2004)

Please come and start a new thread in the allergy forum. It's under health and healing. My guess is that she is reacting to rice or potatoes (since they are actually sort of common, especially w/ FPIES.) We might be able to help you find a different carb. I also have some other things to ask you, but I don't want to get into it on this board.









I will say, in case you don't come post, that you need to insist on seeing a pediatric GI doctor and have her tested for eosinophilic disorders.


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## Tuesday (Mar 3, 2003)

You poor thing! I know too what you're going through - my first son was like this. To be honest, it was awful and people just didn't "get" how tiring it was to deal with an almost constantly crying and awake baby. I have another baby now - he's 6 months and he's totally calm and rarely cries so first of all, I learned that I didn't "create" a high needs baby. Your little one is just wired, IMO, to be the way she is.

What worked for me ... reducing any sort of stimuli and keeping nap and sleep times in a dark room with a lot of white noise. This sounds crazy but I bought this cd http://www.cdbaby.com/cd/fussbuster/from/blackdog and I used to put it on selection #2 every night, ALL NIGHT long at a loud volume. My son, even when he was in a horrible, red-faced, overstimulated screaming fit, would conk out eventually if this CD was playing. Sometimes, I would play the CD and his eyes would flutter and he'd calm down and I'd nurse him. Other nights it was holding, swinging, the CD and nursing. It was so intense and very hard on me but what other solution did I have. Even though I'm not a fan of CIO, I can see how it might work in a modified fashion with a calmer baby (like my second one) but not a little baby who bursts into the world, literally, almost "on fire".

For almost 2 years, literally, the bedtime routine was to put on this Fussbuster CD on "repeat" and play it all night long. As my son grew older, I think the sound of the white noise became soothing and he knew it was calming bedtime. The thing is, you might think he'd become "addicted" to sleeping with white noise on. Funny enough, at age 3.5 years old, he sleeps for about 10 - 12 hours straight each night, sleeps through anything and requires no white noise.

I hope this information helps!


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## Siana (Jun 21, 2004)

My DS *hated* being carried in the ring sling, but I absolutely could not go one any longer carrying in my arms night and day! I handed him off to DP one day, with the sling. He was upset, but at the time I though, "better with him than me." Then, all of a sudden, there was total peace. Turns out DP discovered a way of holding DS in the sling that he actually liked! It was the budah position.

I would suggest going on www.thebabywearer.com forums and asking for positioning ideas for your babe. It's a huge pool of support and information, and you can't beat the wealth of experience there. You might find some unique recommendations that your DD might go for. Carrying her would really save you a lot of trouble, and stop those back aches.

Re: Swaddling
With wrapping in certain positions, you can achieve both babywearing and swaddling in one go. I would recommend www.mamatoto.org for more details (or just go to the Babywearer and ask). Get in touch with local babywearing mamas so they can show you wrapping in action.

I'm not saying wrapping will be a magic solution to everything, but it might just help you all cope better, by at least giving you some free hands now and then. I really wish I knew how great wraps were when DS was little. It would have given us more options for position to choose from.


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## mamaverdi (Apr 5, 2005)

Quote:


Originally Posted by *mum2be* 
We've seen a ND, chiro, CST, allergy specialist, gastroenterologist, PED, kinesiologist, etc. and nothing has worked.

Wendy, she says she's seen GI. Though possibly not pediatric GI.

I agree that EE is a definite possibility.

Honestly OP at this point you need to see regular old conventional/western med specialists. And fast.


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## Prairiemother (Feb 4, 2005)

You sound like a wonderful mamma.

Ditto re: The Babywearer being a wonderful resource for information on carriers. There is a huge difference between ease of use and comfort in types of carriers - if you're holding her you might as well make it easy on yourself. I'm optimistic that you'll find something that works. My ds didn't like carriers when he was your daughter's age but now that I've shoved him in so many times he's gotten used to it and he uses it as an opportunity to scope out the world.

If you live in an area with a NINO chapter (Nine In, Nine Out) my understanding is they have a 'library' of carriers for people to try.


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## bri276 (Mar 24, 2005)

I completely agree that this sounds strongly like a health issue vs. a high needs or sleep issue. Doctors really drop the ball on cases like this because they don't want to admit that they don't know, so they say nothing is wrong- second (and third, and fourth) opinions cannot hurt. I agree w/ eliminating rice, I've heard of babies reacting to that as well.

I know you are completely and utterly exhausted. I hear what you are saying, and I understand why you are desperately wanting to try anything that could alleviate some of this misery. However, I think CIO has the potential to actually make some of this worse. Right now, your baby trust you, as evidenced by not wanting to be held by others. She believes in you to give her what little comfort you can. If you take that away by leaving her alone to cry, she has no one. As horrible as this is for you, it may be even worse for her, as she is operating off not only lack of sleep but, probably, pain. I swear that I am not trying to guilt trip you, and that if your post had not strongly suggested health problems, I wouldn't begrudge you whatever you needed to do- hell, there have been times that I literally could NOT pick dd up because I was so unbelievably exhausted that I was in a state of semi-consciousness and therefore she would cry.








there is something going on in her immune system. Thank God you have not vaxed her. Someone out there must be able to figure this out for you and her. Do the best you can. That's all anyone can ask of you.


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## greenwoman2006 (Feb 1, 2006)

This is a great idea. Keep yourself sane, get some nappy time for yourself! And good luck to you. I feel for you. My dd was the same way, but without the fist pounding. It turned out to be partly allergies. She is still high needs, but I find if I keep her on schedule getting her up early in the morning (as in 7 or 8am), she sleeps much better at night!

Good luck Mama! Hugs to you!



alegna said:


> Something else that I think is important is- you need a break. Can dh take a little run at night where he's in charge and you can sleep? (maybe he's even in charge of latching baby on as needed) Or can you have a friend come over during the day or a baby sitter or even mother's helper so you can get even an hour's nap? Really, you need a break- so that you DON'T break
> 
> 
> 
> ...


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## Siana (Jun 21, 2004)

Re: CIO

IMO, there is a huge difference between walking away from baby when he/she is crying, and being there while he/she is crying, giving that loving assurance in other ways.

There was a time a few months ago when my back was absolutely killing me (later realized it was caused by me akwardly picking up my 4-yr-old every night to transfer her to the other bed). Anyway, I physically couldn't take the strain of nursing LO constantly through the night. For the few days that my back needed rest, I sat on the couch to nurse him to sleep and rocked and swayed DS and I got some shut eye. I did restrict the nursing to a few minutes a side, because he's a marathon nurser and eventually my back would hurt again. He cried off an on during those three nights, because it was so different for him, but I also had to do what would help me out. Whatever crying he did was all in arms though (I still felt so sad







). I spoke to him softly. Told him I loved him. Explained to him the situation as easily and simply as I could.

I don't think he was psychologically hurt from that. My loving arms were always holding him. He was just shy of 2 years at the time.

Don't get me wrong, I'm not advocating letting babies cry, but I just wanted to offer my perspective, because while many people use the term CIO, they might just mean crying-in-arms or something similar. (I'm not sure this is what OP meant though?)


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## ap mom (Dec 23, 2006)

Unfortunately, I don't have any advice, but I do want to let you know I think you're an amazing mom! I wish you and your baby the best.


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## Cate (Oct 2, 2005)

Have you tried putting your mattress on an incline? I know it would take some getting used to, but if she sleeps better it could be worth it.


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *mamaverdi* 
Start with this: www.pediatrix.com Call them up. Get them to send you the screen. You can do it yourself. Then you need a doctor to sign off on it.

Then whether or not it comes back with anything, you need to see a metabolic geneticist. Your child is barely tolerating anything in your diet. You posted before that you were losing weight.

I'm appalled that at the very least your ND and your GI haven't referred you to a metabolic geneticist.

I would also get a sleep study and an EEG.

A half way decent geneticist should know what to order. I can refer you to one in Boston and one in Arkansas if you can travel to those places. I believe you are in WA.

You are going to need to get blood and urine run. I know it hurts her, but it's going to hurt her more all of this being untreated.

Stool samples are NOT going to tell you what is going on with this level of extreme.

Thank you for this. I looked on that website, but only saw the heel prick test. She had that done a couple days after birth and the results were fine. We also added the optional additional testing onto it. Was there something different?

I have an order for an x-ray for dd that I have been putting off. You see, somedays she acts fine; fussy, but fine.
She hasn't done one of her screaming/crying episodes since she was 3.5 months, where they were happening daily. So if there really was something anatomically "wrong", why would it come and go?

Yes, I agree that something is wrong with sleep, but I've also talked with other moms of high needs babies, and all their sleeping sucked. So it's hard to tell if it's just how she's wired, or if there is something wrong









I wondered about the esophagitis and even did some research on it, but it was dismissed by her ND. I agree that we need to start seeing conventional dr.'s now. She is thriving weight wise. She appeared to have reflux (silent) only when I ate a certain "bad" food. But when I stick to the diet, she's fine.

So I guess it's confusing why she can have a stretch of "good for her" days ( with better sleeping too) and why some days just suck and the nights are horrible. I've been expanding my diet, but write everything down and her reactions. Nothing is consistent anymore. When she has a bad night, I could have eaten the same food as on a good night.

See how I could be confused? And you're right, I agree that even though the testing would be painful and psychologically hard, it's worth it if there is something wrong. There's just this little thing in the back of my mind saying that it's not necessary because she can and is good sometimes.


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## mum2be (Jul 6, 2005)

Can't reply to everyone's individual posts, but I just wanted to say thank you for all the support. I haven't been able to update because of another REALLY bad night and yesterday I was a walking zombie and couldn't even see the computer screen. It was scary!

Here's what we did:

Dh forced me to let her sleep in her own bedroom in a baby hammock I had made her (it's a flat surface, but can swing for motion). I nursed her in the rocking chair, she fell asleep after I stuck the paci in her mouth and I gently layed her in it. She woke right up and I couldn't get her back to sleep. She was exhausted too with hardly any naps that day.
So I start bawling because I know how hard it is going to be to continue doing that all night (this was on 2 hours of sleep in the last 24 hours) and dh came in and rocked her/walked her for the next 45 minutes while she screamed and screamed. I knew all she wanted was me, but I couldn't handle it anymore. I was so tired and so mentally out of it that I was afraid I would snap and just start screaming








So she cried, and I cried. I got on the phone with my mother and just vented. It was a horrible night.
Dd finally fell asleep and stayed asleep for 4.5 hours. I'm sure it was out of exhaustion from the crying and I felt so bad even though dh thought it was a victory...

I couldn't sleep without her by my side. I tried and tried (I certainly have insomnia now because of the lack of sleep and wonky sleep schedule I'm on now) and I finally fell asleep and 5 minutes later she was awake. So I go in, take her out, nurse in the chair, and she's WIDE AWAKE. She thinks it's time to play because I took her out of her bed. So I said "screw this" and brought her back to bed. She slept for 3 hours (the only sleep I got that night) and then was up again. This time she was up for good and wanted to play. I started bawling again, so dh came down and took her back into her room. She cried and cried again, but fell asleep after 20 minutes. He said he rocked her and sang to her. I had a white noise machine going in my room and all I could hear was a baby crying and choking and gagging..it was horrible! All in my head too...but I heard it and I couldn't sleep. She slept for two more hours and that was it. Then she was up for the day.

I had 9 hours of sleep in 72 hours. Eeks! I was so out of it yesterday and today I'm the same. I couldn't even take care of her. It was not fun.

So last night I took her back in bed with me and she slept better. She didn't nap yesterday except for 2, 20 minute naps. I couldn't believe it.

Today she was up at 7 a.m. and has only slept for 10 minutes in my arms. It's almost noon now too...

I don't think it's rice, as I had it last night for dinner and she slept better last night than all week.

Potatoes? Possibly. But I sure hope not. The only other carbs I can have are millet, wild rice, and rice.

I just hate the fact that I may have to drop MORE foods out of my diet. I honestly don't think my body could take it...


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## Cate (Oct 2, 2005)

I noticed you're eating rice. A warning about rice milk... if you're using the enriched kind, the 'enriched' part of it comes from corn. I have found that I can drink the regular rice milk no problem, but if I have the enriched stuff, my son has a whole lot of problems. I don't know if this is happening with you, but I thought I would point it out just in case. It took me forever to figure out, for the longest time I thought he was reacting to rice.


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## mamaverdi (Apr 5, 2005)

1) There are over 1500 metabolic diseases.

2) Yes, even with anatomical problems pain etc can come and go.

3) A naturopath is in NO WAY trained or qualified to diagnose EE.

4) It is in NO WAY normal to have limit your diet to that few of foods. If you know what the problem is, it can be treated.

5) No one expects you to be a doctor. I don't see how you wouldn't be confused. 9 hours of sleep in 72 hours has me crying and ready to have a nervous breakdown. It's not SAFE for you or your baby to continue on believing that your baby is just "high needs."

You need to see just to start with an MD pediatrician, an pediatric neurologist, a pediatric metabolic geneticist, a pediatric gastroenterologist, and an occupational therapist.

And Yes, being pediatric makes a huge difference.

Please get help for yourself and for your baby.


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## formerluddite (Nov 16, 2006)

scary flashbacks for me about dd1. your dd is hurting, so she cries and wants only you. it's so hard. but if you CIO you probably know she'd cry until she barfs, cry all night, and then look at you as though you'd abandoned her. or refuse to look at you, like my dd1 did when i first went back to work when she was 5mos.

i did vax dd1, one of my great regrets. she had some signs of allergy problems before her 4mos vaxes (fussy, digestive probs, mucus/green stools, constipation/diarrhea, projectile vomiting, runny nose, nap only attached, often just 20min...), but she only woke 3-4x/night, nursed briefly, let go and slept. then days after that second set of vaxes she became like your dd, she only slept attached, and i couldn't sleep through it. (and i didn't realize the vax connection until i read my first mothering mag a year later). i recall days where dh fed me because only i could hold her and i had to hold her upright and couldn't manage to eat soup. i hallucinated. dh and i fought. i started elimination diets...

so what can i say to help... so much good advice already!

one thing is your brain adjusts to sleep deprivation after a while. when dd1 was little i remember being a basket case after days where i got 3 hours of sleep, now, years later i can function pretty well on those days. and did much better adjusting to it again when dd2 came along. i know hearing the word "years" associated with sleep deprivation is terrifying, but it gets easier, it really does.

i think i've seen your name before, maybe in healing the gut? if not, go to health and healing, start reading/posting. if you and dd both have leaky gut issues, she will continue to develop new allergies to the foods she gets the most exposure to. so if you've been eating those same ?8 foods for months, they may not be "safe" anymore, and other "unsafe" foods could be added back in, a little at a time, without her reacting. my dd1 was great when i went on the turkey, lamb, rice, millet, yam, zuccini, ?,?, diet (13 foods) for about 3 weeks, but it got bad again until i was back to square one by 5 weeks. so i'd look into trying other foods for a while, that she's never been exposed to, like amaranth, teff, quinoa, buckwheat (grains), leafy veggies (kale, bok choy), meats you don't usually eat (?rabbit, deer, bison), and then go for as much variety as possible to limit the dose of any one food. but keep the biggies gone: dairy, wheat, soy etc., for a long time.

i know the most confusing thing is trying to figure out why there are good and bad days. for us it was complicated by my working 1-2x/week, so dd1 was getting 3-4 week old frozen pumped milk on those days, and often did better or worse, and i'd have no idea if it was something i ate that day or a month ago. do you ever pump and store/use your milk?

look into NAET. it's an accupressure technique that's supposed to "reset" the body's response to offending foods/substances. but if your gut is still "leaky," then it may not help until after you improve that.
http://www.naet.com/

a common problem associated with leaky gut and allergies is yeast. you can look here for info, see if anything seems like it fits. http://www.yeastconnection.com/

probiotics. i hesitate to recommend a brand, because they have fillers (corn, potato, silica!), or residual dairy proteins, etc, and i don't want to make things worse. but look in healing the gut and people there can tell you lots about different brands and help guide you. both you and dd take them.

and last but most certainly not least, *try supplememting with minerals*. both for you and dd. you can add them to a little expressed milk, or water, by spoon if no bottles are used. you know your nutrition is compromised after such a resricted diet. i've been reading momtezuema tuatara's sticky in the vax forum, nutrition and immunology 101: http://www.mothering.com/discussions...d.php?t=406983

so i got inspired to start adding trace minerals to our water jug. it makes sense, and i feel more energetic yet calmer now, plus less hungry/"snacky" and lost almost 5# in the month. cheesy anecdotal testimonial, but minerals might help. they shouldn't hurt, since they're not food based. i've been using this: http://www.traceminerals.com/products/drops.html


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## bri276 (Mar 24, 2005)

one last piece of advice- the insomnia thing. brainwash yourself to have one zone-out stream of thought. for example, a storyline in a book or tv show, one that isn't too interesting, so you can't think too much about it, and FORCE yourself to only think about that one subject, over and over and over again, and do not allow yourself to toss and turn, find one comfortable position and stay there.
sounds weird, I know, but it's the only thing between me and a crappy night's sleep when my circadian rhythm is all out of wack like yours must be.








but just think- you slept like crap- but SHE actually slept 9.5 hrs, which isn't too shabby. I know, cold comfort!


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## sophmama (Sep 11, 2004)

I'm so sorry you're having to deal with this. It sounds awful. I agree this is not just 'high needs' or even 'needing new sleep habits' - this is an undiagnosed health issue that none of the specialists you have seen yet have found.

If it were me I would pump some milk and leave her with someone trusted (dad or grandma) to finger feed or something for 4 hours and get some sleep somewhere silent and not in the same house as your dd. I might even do it for 6 if my health were at the point of severity yours is. And I might do it more than once until I am at a point of sanity. Know that your dd will not die nor suffer severe psychological damage from a 4 hour stint with her other parent. In fact, my dd learned to let daddy comfort her after a few episodes like this. It takes time and they have to learn their own dance together. And a hallucinating health failing mother is not helping her dd. Let her learn to be soothed by another adult who is just as committed to her as you are while you preserve your life and mind. Give yourself permission to have a break. Put yourself in a position to not be able to hear her crying. You're living on adrenaline. It will be hard to shut down! Maybe schedule a masseuse to come in and help you get relaxed to sleep. You HAVE to get more than 30 minutes of sleep at a time!!

The thing I think you may need to let go of is that *you* can solve her issues. It is really not something you likely have the expertise to do with the severity of symptoms. You need someone who will take you seriously and not just call your dd 'fussy'. It's way beyond that. I've had friends with special needs kids that had to tear up a warpath to find experts that could really diagnose and treat their children because entry level docs didn't 'get it'.

So in summary:

a) you need to take care of yourself - just a little bit.
b) you need experts that _understand_ and can give solutions! This is a health issue! Something is not right!


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## woodstar (Sep 17, 2005)

mum2be- how are you doing? i was in your ddc...back before all this







: ...hope you are staying sane!! i read your post and had to let you know that you aren't alone. i am going through the exact same situation here with ds #2. we have been to the dr so many times. friday is the allergist/asthma doc. there just has to be an answer. babies need to sleep sometime, don't they? never did i think living off of 2 hours of sleep a night was posssible. it is becoming worse and worse. if i had some advice or answers, i would totally give it up. but unfortunately, i have none except for go easy on yourself. do what you have to do to survive and stay sane at this point. sometimes, i am so tired that i just hold ds in our bed while he cries and i doze off in and out. but he doesn't want to nurse or anything....just cry.

so, i just hold him, love him, and do what the moment calls for at this point...oh, and i cry a lot.

i will say a prayer for you and your family.


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## shayinme (Jan 2, 2005)

Quote:


Originally Posted by *mamaverdi* 
1) There are over 1500 metabolic diseases.

2) Yes, even with anatomical problems pain etc can come and go.

3) A naturopath is in NO WAY trained or qualified to diagnose EE.

4) It is in NO WAY normal to have limit your diet to that few of foods. If you know what the problem is, it can be treated.

5) No one expects you to be a doctor. I don't see how you wouldn't be confused. 9 hours of sleep in 72 hours has me crying and ready to have a nervous breakdown. It's not SAFE for you or your baby to continue on believing that your baby is just "high needs."

You need to see just to start with an MD pediatrician, an pediatric neurologist, a pediatric metabolic geneticist, a pediatric gastroenterologist, and an occupational therapist.

And Yes, being pediatric makes a huge difference.

Please get help for yourself and for your baby.









: I have been following your story and what you describe seems a lot more severe than just a high needs baby. I absolutely agree with Mamaverdi that you need to get some help for your baby.

Please take care of yourself and your baby.

Shay


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## Ary99 (Jan 1, 2002)

This sooo sounds like my sweet refluxy baby before he was on his Prevacid. Even now WITH the meds, and me being on a crazy diet, his poop is weird. BUT he's much happier than he was and I think the weird poop will eventually decrease as his gut matures (he's almost 6 months).

THIS WILL NOT LAST FOREVER. It feels like it now, but I promise something will change. I didn't think reflux could cause all the problems my son had, but it sure has been the root of most of them.


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## cahwilson (Jan 24, 2007)

I hope you are doing well and wish you luck in finding the solution to all this. I have a 6 month old who usually sleeps for 20 minutes at a time at night.







: I know what you mean about exhaustion but also wanting to be there for her. I find that I cannot rest or relax unless I know that she is okay and happy. Dd has had some good nights (only waking 5 times) and then the bad... The only medical issues she is having is reflux (not bad enough for meds according to ped) and intolarance to cow protein. It is still confusing to me I just know I cannot eat anything that comes from a cow for now. Dd will not take a bottle and still nurses every 2 hours so I cannot leave her with anyone. I started co sleeping recently and that helped for a night or two. As far as CIO goes I did (as pressured by dh and ped. to do so) let her cry one night, but she only cried for 5 minutes and then started banging her head so that was the end of that. I do not reccomend this at all! I would not be able to forgive myself if I had gone that route even if it did work.

I just wanted to let you know that I feel for you. It is an awful feeling to be frustrated and mad at your baby. I hate those nights. The only thing that has worked for me is givng up.







I certainly don't reccomend this until you are positive that there is nothing medically wrong with her. I have no more plans or methods I just do what it takes to stop the crying and get her to sleep. I lie to myself about how much sleep I get and I no longer count how many times she wakes up or look at the clock during the night. In fact I took the clock out of our bedroom because the truth of how much uninterrupted sleep I got hurt. I try to nap when she does which includes napping with my feet proped up and holding her. I think my body is starting to adjust. This is probablly not good advice but it has worked for me. There are days that seem unbearable, but sometimes when I get to that point it is like she gives me a good night or a long nap. She has taken a couple long naps today and I layed down for an hour and then shot up because I thought she must have died in her sleep. Does that ever happen to you if she sleeps for awhile? It is like you are so not used to it that you suddenly wake and check on her thinking she died. Ugh I can't even sleep when she does!! LOL

I wish you the best of luck with everything. It is so hard to go through this especially with ppl (or dh) nagging you to let her cry. You know in your heart that is not the answer. Just try to find the good. I always tell myself that at least she wakes up. I would rather her be a light sleeper and wake if she stops breathing, then be a heavy sleeper and one night not wake if she stops breathing. We do have an appointment for dd at a sleep medicine and research center in March. I seriously hope that you are doing much better by then, but if not I will let you know if it is worthwhile. Let me know if you ever want someone to vent to!!


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## toemizan (Sep 16, 2006)

Just another thing to consider.

My daughter has Sensory Processing Disorder and now that I understand it and have learned from it, I believe that alot of her sleep issues, not as severe as what your daughter is experiencing, but very similar, were from this. The exhaustion she has only makes it worse.

I know you are so very exhausted, and it is hard to function at the basic level, but consider talking to an occupational therapist that specializes in Sensory Processing Disorder. A pediatrician could hopefully point you in the right direction.

Hugs and best wishes.


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## Ary99 (Jan 1, 2002)

I was thinking too that she sounds like a kid who is over stimulated in some ways. Where do you live? In the United States we have Early Childhood Intervention programs


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## mamaverdi (Apr 5, 2005)

For information about Early Childhood Intervention in Maine...

Maine Parent Federation - 1-800-870-7746 (in-state only) or (207)623-2144
http://www.mpf.org/


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## Bennifer (Jul 26, 2005)

wow, are you one dedicated mom. I can feel some of your pain, as I have a high needs son, and although his sleep sucked as an infant, it has improved...but it was no where near as bad as you describe, which makes me think maybe others are right that there are medical issues here.
My only advice comes from your remarks that your child seems to fight sleep, takes 20 min naps, etc...I am currently reading Mary Sheedy Kurcinka's book, "Sleepless in America." Personally, I found NCSS and any other sleep book to be worthless, and this one is practical and makes sense! She talks about how Time, Temperment, and Tension can really mess with your child's sleep. Time meaning your daily routine (some kids need it to be the same every single day--when they eat, when they nap, when they have active time vs. quiet time), Temperment meaning you can have a higher energy child, a more sensitive child, etc and that makes sleeping much much harder, and Tension meaning the stress that your child feels and that you feel (b/c the child feels your stress)--which in your case would be a big one, I'm sure. As you look into the medical things, it might not be a bad idea to look into this book (I got my copy at the library). We have been reading it here for the last week and I've made some big progress with helping my spirited, high-need child fall asleep and stay asleep, while still being there for him and meeting his needs. Hope that helps. I will keep you and your child in my prayers. I remember nights (actually, just had one the other night) where ds would be crying, and I'd be crying...so tired, feeling so hopeless. I know you said you didn't want to hear, "this too shall pass" but it will. I don't mean, just wait it out and it will get better. I mean that you *will* figure this out, together, your child and your dh and yourself, and things *will* get better. God doesn't give you more than you can handle, although I will admit it often feels like it. Your child is so blessed to have you for her mother, b/c you obviously love her immensely and are trying so hard to help her. Often I think that is what is most painful for us as mothers, feeling like we can't help our children, b/c we would give anything to take away their pain. You are in my thoughts. Please get some rest, any way it is possible.


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## lisac77 (May 27, 2005)

My DS was just like your DD. I drew the line at restricting my diet... I tried it for a while, but I lost so much weight and couldn't eat anything... I just compounded my depression. We did have him on Zantac for the acid reflux and it helped a lot, but then he was just high needs.

The 20 minute naps during the day... waking every hour all night long... that was him to a T, until he was about 18 months old. We never did CIO, and I am convinced to this day that it would not have worked. My son only got angrier and more upset when he cried for long periods of time, and it sounds like your DD is the same.

You will have to find a way to let your DH cope with your DD. If you need more sleep than you are getting, that's your only choice. I was lucky, I could function on little sleep (I'd been working nights for years before I had DS) for quite a long time. However, when DS was about 18 months old, I had to stop working nights because I was so sleep deprived. I feel for you, mama. I've been there, and it SUCKS.

Because I worked nights, DH had to learn how to comfort DS and DS had to learn to accept comfort from DH. They did eventually find their routine.

I'm so sorry and I hope things get better for you soon!!


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## lisac77 (May 27, 2005)

Oh, and also... now he is 3.5 and sleeps all night every night (barring illness or something) like a little angel. So don't worry that these "early bad sleep habits" will ruin your DD's sleep forever. Your time will come!!


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## jaidymama (Jun 18, 2005)

I hope that you have found the medical assistance that it sounds like you all need to find a healthy balance of sleeping and eating. Certainly it sounds like you're well beyond anything described as a high needs baby.

I think it's great that you're getting help to get some extra sleep. But I hope you understand that it sounds like your struggles are more complicated than training a baby to sleep. It sounds like your baby is in distress, I think it's vital for you both to find out what is causing that. I don't know if anyone else said this... but if she does have allergies then formula would perhaps make her situation worse. Please dont' wean your baby until you have medical proof that that's what's causing her problems.

Hope you're all doing better.


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## motocita (Oct 31, 2004)

i'm sorry i didn't read all the replies, but i wanted to add, in case it might help, that with our dd, her colicky behavior was due to ALL GRAINS, and ALL MILK. one easy thing you might be willing to try is cutting out the rice and potatoes for a couple of days and see what happens.

i hope that helps,
silvia


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## Kundalini-Mama (Jul 15, 2002)

This was my older son.

He was reacting to every food out there, and once I took a food out, he would react to a new one. At the end, I ended up taking out 35-40 foods that him and I didn't eat.

Finally we discovered that him and I had a leaky gut. Food was sneaking out of teeny wholes in my gut and getting into my blood stream and then breastmilk and causing a huge reaction.

Please go to the Health and Healing forum and read about "Healing the Gut". This is the only thing that helped us, and I will say, save us.

Must love to you,
Amy


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## megincl (Sep 10, 2002)

Just wanted to check in with you Mum2Be to see how you're doing with all of this.

be well,
megin


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *motocita* 
i'm sorry i didn't read all the replies, but i wanted to add, in case it might help, that with our dd, her colicky behavior was due to ALL GRAINS, and ALL MILK. one easy thing you might be willing to try is cutting out the rice and potatoes for a couple of days and see what happens.

i hope that helps,
silvia


Thanks. While people have told me to cut both of those out as well, I just can't. I lived on 8 foods (4 veggies, one meat, a nut butter, basmati rice and potatoes) for 3.5 months. I CAN'T cut out anymore. Seriously. It's not that I'm not willing to do it, it's that my body can't take it. I have severe eczema on my hands from malnourishment (it got worse the more restricted my diet got), my hair is falling out in clumps and I have bare spots on my head now







, I'm smaller than a size 2 (I refuse to buy size 0 jeans...) and have no hope of keeping any weight on with my current, slightly more expanded, diet.

So if it would help to cut the rice and potatoes, I don't think it's fair to my body to do so. Does that sound fair?


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## mum2be (Jul 6, 2005)

BTW: I'm currently working on an update and replies to other people


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## shayinme (Jan 2, 2005)

Quote:


Originally Posted by *mum2be* 
Thanks. While people have told me to cut both of those out as well, I just can't. I lived on 8 foods (4 veggies, one meat, a nut butter, basmati rice and potatoes) for 3.5 months. I CAN'T cut out anymore. Seriously. It's not that I'm not willing to do it, it's that my body can't take it. I have severe eczema on my hands from malnourishment (it got worse the more restricted my diet got), my hair is falling out in clumps and I have bare spots on my head now







, I'm smaller than a size 2 (I refuse to buy size 0 jeans...) and have no hope of keeping any weight on with my current, slightly more expanded, diet.

So if it would help to cut the rice and potatoes, I don't think it's fair to my body to do so. Does that sound fair?

My gosh, I can't see how anyone can even suggest that you cut out more food, you are right of course its not fair to your body. Your dd needs you to be healthy so you can take care of her, I hope you can get the help she needs so that you can take care of you.









Shay


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## wendy1221 (Feb 9, 2004)

Quote:


Originally Posted by *mum2be* 
Thanks. While people have told me to cut both of those out as well, I just can't. I lived on 8 foods (4 veggies, one meat, a nut butter, basmati rice and potatoes) for 3.5 months. I CAN'T cut out anymore. Seriously. It's not that I'm not willing to do it, it's that my body can't take it. I have severe eczema on my hands from malnourishment (it got worse the more restricted my diet got), my hair is falling out in clumps and I have bare spots on my head now







, I'm smaller than a size 2 (I refuse to buy size 0 jeans...) and have no hope of keeping any weight on with my current, slightly more expanded, diet.

So if it would help to cut the rice and potatoes, I don't think it's fair to my body to do so. Does that sound fair?

No, it's not. You need to have some other foods to make up for it. Quinoa, millet, teff, etc. LOTS of oil to make up calories. In your situation, I would be seriously considering neocate or elecare. I have been top 8 and gluten free for a year now (recently added dairy and non wheat gluten back in) and just that is hard enough. I did a TED of just free range turkey, rice, sweet potatoes, pears, olive and rice bran oils, and squash and could only handle it for 1.5 weeks before giving up (luckily, his mystery reactions were due to Rice Dream dairy contamination, which I didn't realize was going on, so I stopped the Rice Dream and the TED at the same time w/ no problems.) People who have done multiple food ED's understand, others might get that it's hard, but not really get HOW hard, PHYSICALLY as well as MENTALLY, it is. Are you taking a multivitamin? You NEED to take one.

Have you joined http://www.kidswithfoodallergies.org ? If not, I strongly suggest joining TODAY and posting your story in the main forum. If you can't afford the $25, send a message to the webmaster explaining your situation and they'll get you in within a few days (no, they don't want personal info, just why you need them.) There are several experienced moms there to help. A few also post here, but unless you go to the special needs board or the allergy board, they probably won't see this.


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## mum2be (Jul 6, 2005)

Thank you for all of your replies. I will start by addressing the past few days sleep-wise, since that's what this thread was started for, then I will address the various thoughts on allergies and testing some of you have suggested.

It's been better for the past two (or three?) nights. She still wakes about 6 times in between the time I put her to bed and the time I actually join her (about 2 hours). It's a pain, but I don't know how to KEEP her asleep...But she is sleeping until 6:30 a.m. and waking every hour in between. This is HUGE improvement over the previous week. She hasn't been staying awake for long periods around 2 a.m. It's amazing how just waking every hour and quickly going back to sleep seems like Heaven









It's almost like a "bad" food has to work itself out of her system. She was doing well for a few days and then I had 1/3 cup of sheep's yogurt and it all went to hell. Then magically a week later, she is doing better. I'm scared to death to try anything new or different in my diet now. She is MUCH more pleasant during the day because of the sleep she is getting at night.

Her napping is still the same. In fact, for two days in a row she only slept for about 30 minutes total in my lap. I tried and tried to nurse her to sleep in bed when she seemed tired, but she would wake right up and want to play seconds later.

Then today she slept for an hour in the car. She fell asleep 5 minutes before we reached the co-op and so I sat in the car while she snoozed. Can I tell you how glad I was that I grabbed a book incase that happened?







Dh thinks I'm crazy to sit in the car and let her sleep, but any sleep she can get, I will gladly let her have. The we got home and she slept 45 minutes in my lap!!!!!!!!!!!!!!!! She's never done that before! She is now down for the night, although I've got the monitor on and am waiting to rush in there as soon as she wakes up. If I don't, she gets into "full awake mode" and won't go back to sleep...

So things are better. I feel more rested, more able to function during the day, although still sooooooooo very tired. It's just a matter of how long it will last this time. I just wish it could stay like this so I can be a good mother to her. She is now laughing and giggling and smiling all the time because she is getting a good 12 hours of sleep out of 24, even though it's in hour chunks. She has more fun and mommy can be fun too! It's so wonderful being able to kiss your baby and tell her you love her, tickle her, give her "butterfly" kisses on her belly, instead of resenting the fact that she's in your life. That's how different sleep can make you feel.

************************************************** **************

Okay, onto the allergy part.

We have taken her to so many doctors. The only "conventional" one, so to speak, was the GI ped. specialist. He was the LEAST helpful, proclaiming that babies can only be allergic to milk or soy and what was happening with her when I would eat a "bad" food was just a coincidence. Oh please...

So we kinda swore off conventional doctors then and there because it was such a horrible experience. Elisabeth was screaming because they were poking her and were just so cold to begin with. I wanted to run right out of there. And he was supposed to be the best in the state.

I just finished a "leaky gut" test from Smokey Labs (i think it's called that) and am awaiting the results. I've had blood tests which show that my cholesterol is so low that my liver is producing fat for my body. There was also something about my cells being too thin. (Didn't quite understand that though.) Saturday I go in for more blood tests: hormone levels and thyroid.

We have an x-ray order for dd which we will do. I'm just hesitating because she has been through so much and I have listened to her screaming for so long, that any more screaming or crying (which I know will happen when she's strapped to a table for the x-ray) just seems unbearable to me and I didn't want to do it. I just have a gut feeling that they won't find anything "physically wrong" with her. But I'm probably wrong...who knows. I just don't get why she could be so good for a while and then I eat a bad food and she gets worse, and how that could be a physical problem that they'd find on an x-ray.

You see, I want to rule EVERYTHING out before I wean her. She is so incredibly sensitive as it is, and weaning her would have great emotional affects I feel. I can't even imagine how hard that would be. And there's no telling she would tolerate a formula. But I tell ya, I've thought many times about how much "easier" it would be if she would just take a bottle of formula and I could actually eat again.

I have a call into a ped. in the area who is supposed to be pretty good. I'm going to try to get an appt. with her.

I've also been waiting to do more testing on dd until the leaky gut test results come back for me, as that could explain a lot.

BTW: we have HORRIBLE insurance. To add dd and I to dh's plan through work would cost us over $12,000 a year. Yes, I wrote that correctly. We just can't afford it, so dd and I are on a private plan that is cheap, but barely covers a thing and has a huge deductable. So everything we are doing now is coming out of pocket. Heck, her stool sample alone was over $300!
So this is another reason we have been semi-reluctant to do a whole bunch of testing. Not that dd's health isn't important enough, but we also need to eat and live. Because of my diet, the special foods I am eating cost us over $200 a week, not even counting dh's food.

I can't complain anymore about the diet I am on. I've been able to add more things in (although most are rice-based which is NOT good for the whole rotation diet thing), but I am getting better nutrition. Still lacking in many areas, but it's loads better than what I was doing. I'm even reaching 2,000 calories some days!!

Another problem I think I may be dealing with is my milk supply. After last week's stressors because of the sleep thing, my limited diet, low calories, etc. I believe my milk is starting to dry up. I've suspected a decrease in supply for a while, but the past few days have been bad. This is a whole nother thread though







So this could explain her very frequent waking the past couple of nights. She just isn't getting enough









Okay, that's all for now. I can't believe I just typed that WHOLE thing without dd waking up!!

Thanks again for everyone's thoughtful replies. It means so much to me to have support!


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## alegna (Jan 14, 2003)

It does make sense for it to take a week to get a "bad" food out of her system.

good luck!

-Angela


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## Kundalini-Mama (Jul 15, 2002)

I just wanted to add, that when we started the Specific Carbohydrate Diet we added food into our rotation that my son reacted to--as long as it wasn't anaphalactic (sp). My son wasn't allergic to anything perse, just reacting.

This made it hard for a lil' bit, but the thought is that your gut & your child's gut will heal and as long as you were consuming food that wouldn't kill your child, nor aggravate the gut, all was good. Rice and potatoes will aggravate.

Check out http://www.pecanbread.com and the book, "Breaking the Viscious Cycle". I cannot recommend this diet enough. I was totally in your place years ago and struggled with it for years before I _finally_ had an answer.

There is also some yahoo groups, search "SCD".

I wanted to add, that I understand your desire to give a bottle and be able to eat---not that you want to do it at all, but it is very tempting. But, there is a problem in your gut and the gut is the heart of your immune system. If I figured this out years ago when Aidan was still a babe, I'm sure I wouldn't be on my cancer journey right now. I am very sure of this. You need to heal not only for your daughter, but for you.

Much love to you,
Amy


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## shayinme (Jan 2, 2005)

Quote:


Originally Posted by *mum2be* 
BTW: we have HORRIBLE insurance. To add dd and I to dh's plan through work would cost us over $12,000 a year. Yes, I wrote that correctly. We just can't afford it, so dd and I are on a private plan that is cheap, but barely covers a thing and has a huge deductable. So everything we are doing now is coming out of pocket. Heck, her stool sample alone was over $300!
So this is another reason we have been semi-reluctant to do a whole bunch of testing. Not that dd's health isn't important enough, but we also need to eat and live. Because of my diet, the special foods I am eating cost us over $200 a week, not even counting dh's food.

I can't complain anymore about the diet I am on. I've been able to add more things in (although most are rice-based which is NOT good for the whole rotation diet thing), but I am getting better nutrition. Still lacking in many areas, but it's loads better than what I was doing. I'm even reaching 2,000 calories some days!!

Another problem I think I may be dealing with is my milk supply. After last week's stressors because of the sleep thing, my limited diet, low calories, etc. I believe my milk is starting to dry up. I've suspected a decrease in supply for a while, but the past few days have been bad. This is a whole nother thread though







So this could explain her very frequent waking the past couple of nights. She just isn't getting enough









Okay, that's all for now. I can't believe I just typed that WHOLE thing without dd waking up!!

Thanks again for everyone's thoughtful replies. It means so much to me to have support!

I am guessing you have a crappy Anthem policy? I have one myself and it covers nothing, however with everything you guys are dealing with, have you considered applying for Maine Care? That may help with some of the costs.

Shay


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## mowilli3 (Jan 7, 2007)

I'm sorry to read your story, Mama. I don't know anything about these medical problems that people are suggesting, but I do know that a sick and depressed mama cannot heal a baby. You have got to eat to recover from your birth. You need protein and vit C. You need good fats. Can you eat avocado? I'm so sorry for you. My own personal philosophy is that when things start to get too complicated, it's probably because it's too complicated. I would just suggest to you that DH takes DD for a long 2-3 hour drive so that you can rest. When you are rested, ask your heart what's the thing to do. You might come up with something that will make things better for all of you. Don't kill yourself to heal her.


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *shayinme* 
I am guessing you have a crappy Anthem policy? I have one myself and it covers nothing, however with everything you guys are dealing with, have you considered applying for Maine Care? That may help with some of the costs.

Shay

Nope. It's called MegaLife. We don't qualify for Maine Care because of dh's income


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## mamaverdi (Apr 5, 2005)

Children can often qualify by themselves for Medicaid. You have to know who to ask. I would bet that Maine group would have an idea.

Swearing off doctors because one doctor was an







....well...see I guess you don't know my story. Basically I did the same thing. It's come back to bite me in the







in a big way. There are idiots in every profession.

Scrape together your money, get in your car, go to Boston, and see Mark Korson.


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *mamaverdi* 
Scrape together your money, get in your car, go to Boston, and see Mark Korson.

that would be a nightmare! she hates the car if the ride is longer than 45 minutes







3.5 hours? that woould be rough.

i called a ped today that i've heard is good, but couldn't get an appt. until the 23rd









so who's mark korson and where is he?


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## shayinme (Jan 2, 2005)

Quote:


Originally Posted by *mamaverdi* 
Children can often qualify by themselves for Medicaid. You have to know who to ask. I would bet that Maine group would have an idea.


Actually that's what MaineCare is, its the insurance/Medicaid for kids but it is still tied to income. Here in Maine it can either be free or have a small costs, but I think for a family of 3, the maximum income is about $2700 so if her dh makes too much money, they won't qualify. Unfortunately here in Maine there are a lot of us in that boat of having high deductible crap policies that cover nothing yet not being eligible for assistance.

Mum2Be, are you on the Mindful Maine Mamas board? Its a group of AP minded Mamas and while most of the Moms are based in Southern Maine, you might be able to get referrals and information to see if there are any specialists you are not aware of. I find that most Maine Mamas seem to post there rather than here at MDC, if you are interesred in joining, Pm and I will send you the URL, it is a private board.

Shay


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## megincl (Sep 10, 2002)

Quote:


Originally Posted by *mum2be* 
that would be a nightmare! she hates the car if the ride is longer than 45 minutes







3.5 hours? that woould be rough.

i called a ped today that i've heard is good, but couldn't get an appt. until the 23rd









so who's mark korson and where is he?

I totally feel you on this. But, having put DS through some horrendous things (test for reflux, tons of blood tests, etc), actually figuring out what was bothering him was, in the end, worth it. It's horrible in the midst, but getting answers, and the sleep that went along with those answers (sometimes!







) was worth it in the end. Not discounting the immediate suffering -- I don't mean worth it like that. But just worth taking a long-term perspective, which was really hard for me to do when none of us were sleeping. So, I guess I'd say that it's worth a look or consideration to see if you might be able to slog through a horrendous trip to get the input of a recommended expert. Oh, and the offer still stands -- I'm right outside of Boston, so if you need any in-city support, I'll be there! Promise.

super duper hugs and restful thoughts to you, mama.
megin


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## mamaverdi (Apr 5, 2005)

Mark Korson is a metabolic geneticist in Boston. He is competent and kind.

You AND your daughter both need to be worked up for metabolic disease.

WRT the car. Take an airplane then. There are medical flights for free for people in need. Ask for help from your friends, your family, your neighbors.

There is almost no situation where help cannot be found if you know where to look.

As far as Medicaid, every state is different. But we were told the same thing. Our baby ended up qualifying with his own income. Which was nothing. Like I said, you have to know who to talk to to apply this way. Healthcare and insurance are horrid all over the US. I'm not saying I want socialized medicine, but I'm so sick and tired of people not being able to get help because of insurance barriers.

Look mum2be, I guess I've hardened. I don't CIO at all. But crying in the car and holding down for an xray just isn't being through a lot to me. Your baby needs the work up, the blood draws, the urine, etc....whether it causes her to cry or not. One has to find that place in themselves where they hold it together to take care of a child in need.

You are wasting away. And who knows what will happen to your daughter once she weans....or once breastmilk alone cannot sustain her. Or once your supply drops off. As it is, she has strange smelling urine, doesn't sleep. Can she sit? Roll over? Does she mouth things?

It's disturbing that you are wasting away on an elimination diet. That doesn't happen to most people. With metabolic disease, often parents are either carriers or actually affected by the disease and never knew it before. Carriers can also be symptomatic.

I hate for there to be pain in the world at all. But it's a calculation. Some pain here to maybe save much more damage now and later.


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *megincl* 
I totally feel you on this. But, having put DS through some horrendous things (test for reflux, tons of blood tests, etc), actually figuring out what was bothering him was, in the end, worth it. It's horrible in the midst, but getting answers, and the sleep that went along with those answers (sometimes!







) was worth it in the end. Not discounting the immediate suffering -- I don't mean worth it like that. But just worth taking a long-term perspective, which was really hard for me to do when none of us were sleeping. So, I guess I'd say that it's worth a look or consideration to see if you might be able to slog through a horrendous trip to get the input of a recommended expert. Oh, and the offer still stands -- I'm right outside of Boston, so if you need any in-city support, I'll be there! Promise.

super duper hugs and restful thoughts to you, mama.
megin

You're so sweet







: Thanks for the offer! I know that if there was something wrong, I would kick myself for not figuring it out sooner. I'm going to try to do the x-ray today...


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## mamaverdi (Apr 5, 2005)

Do you actually think that nothing is wrong?


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *mamaverdi* 
Do you actually think that nothing is wrong?

Well, to be quite honest, in my gut I feel that there isn't anything physically "wrong" with her. I feel like this is something that will get better with time. I feel that food is an issue and probably both of our guts. All of the doctors we have seen don't seem to be concerned that there is anything wrong with her either. They think we are dealing with a VERY sensitive baby and that the food issues are causing a lot more problems, like trouble sleeping. They're skeptical that any tests will result in a diagnosis.

Please keep in mind that my "gut" feeling is NOT what is keeping me from getting these tests done. It's mostly the fact that I had a screaming baby for the first 3.5 months of her life. It was horrible. Anything that would cause her to scream more, we avoided. People said it was colic, food allergies, emotional distress, etc. Knowing that these tests would cause her more pain and result in more screaming was almost too much to bear. Does that make sense? Every time she screamed, my heart would break.

That being said, she is hitting all of the developmental milestones despite everything. She started "sitting" at almost 4 months. She's getting better and better at it too. She's been alert from day one and is so aware of her environment. Everyone comments on how alert she is.

I'm not finished this reply yet, but my computer is about to crash, so I have to cut it short for now


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## mamaverdi (Apr 5, 2005)

It does make sense. And like I said, my own personal experience both taints and informs my opinion. And like I said, I've hardened out of necessity. It's not that my heart doesn't break when my child has something painful that he has to go through, but unfortunately the ends are necessary and there are no other means in our case.

Is no one concerned about you though? I know your diet is limited, but so are diets of many people, and they don't lose so much weight, hair, etc.

IMvvvvvhO, the two are related.

FWIW, my older son had no apparent developmental delays. It took a very skilled couple of practioners to spot the issues because he is otherwise so advanced. Not to throw another wrench into the mix. And after 8 months, his issues did SEEM to resolve.

Until they came back with a vengence.

But to see my children: they look normal. And many of the doctors we have seen don't think there is anything wrong that they won't outgrow or can't be attributed to other things.

And looking back, I felt I was trusting my gut then too.

But in my world view, everything happens for a reason. So







I try not to be too hard on myself.

I hope that you don't think I'm being too harsh. I know that I can come across that way. It isn't at all my intention.

But from my distant perspective, over a board, based on what you are describing, something is wrong. This may be the only sign of it until she is 6 or 8 or 15. But something is not right.

If I were in Maine, I would go see Mark Korson.

But that's me.


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## mamaverdi (Apr 5, 2005)

Okay, posted to the wrong thread there.


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## Acugirl (Jan 1, 2003)

Hi,
I just reading your post and all the others, and your dd sounds a lot like my first dd and my ds who is 7 months.

The only difference with me now with my second is that I am different. My dd is now four and she sleeps through the night 12 hrs straight without a peep and has for some time-she wakes to pee occasionally. I never did cio with her. she nursed every 2 hrs all night until she was 2.5. I took her to a million drs, homeopaths, chiropractors, reiki etc. I eliminitated things in my diet to no avail.

my son definitely has allergies, he has mucous in his stool despite me being dairy,soy, gluten nut, etc etc free for months. he has horrible red cheeks and itchy neck. He nurses ALL NIGHT long every night. He will nap for 45 min by himself 3 times a day, but that is it, never more. I have to hold him, play with him etc all day or he screams. If dh tries to comfort him he will not stop crying.
I had him blood tested for allergies and it showed potatoes and peanuts. I hadn't been eating peanuts, but cut out potatoes and things improved for a week. Now they are bad again. It is a horrible feeling to feel like you are doing all you can and still not see results.

I would say, cio will not help you. It seems like you know that. For me reading Healthy Sleep was one of the worst things i ever did. It totally depressed me, scared me and made me feel like a complete failure. My dd is not damaged from what I did regarding her sleep. She does not have adhd or any other problem that Dr. Weisbuth claims your child will get if you don't let them cio or ensure somehow that they sleep the requisit 12 hrs a night. Really, she is fine.

With my son, I try to keep this in mind. I know how hard it is. Hold your baby, love her, do what she needs. She will grow, things will change, they really will.
For your sleep at night I highly recommend REscue Sleep-it is a spray you can get at whole foods that really helps me relax and not be so frazzled by the night wakings. also, remove the clock from your room and don't count how many times she woke. That helps a lot. Try to focus on the good and not the bad. You will start to see more of the good and your dd will feel that.

I know it is easy to say. I have been there and am there right now with my son. he really nursed the entire night last night. I cannot nap when he does because my 4 yr old needs me too.

Good luck to you!

PS...if you dd is growing and otherwise thriving, I doubt that she has a serious medical condition. Not that I am a dr though.
Also, as she grows, she will probably be really smart, curious, and intune with people around her.


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## jaidymama (Jun 18, 2005)

To the OP:

Insurance: Check out some Health care savings accounts... ours works in conjunction with a High Deductible health care account... how it works is we put our own money into a mutual fund type account, and use that money specifically (and only) for medical needs. The money also earns interest and rolls over from year to year. It is also considered a tax deductible thing. And ours has a high deductible... we would have to spend $7000, but they pick up all the expenses after that. However, our monthly bill for all of us is around $300. Soooooo just thought I'd offer that to you.

Allergies: don't let the doctors drag you through a bunch of tests. Get you and your daughter an allergy test as soon as possible. Go to an allergist, and there are different kinds. There are skin prick kinds (which I think tend to cost less) and there are the blood draw kinds.

Health & Money: once you have the test done you will the know which foods you can add back in to your diet and which foods your daughter needs to avoid. It will take most of the guesswork out of what to eat. I think you would be relieved. Honestly, I think you have to ask yourself how much would you pay for your troubles to be resolved? Or would you rather not spend the money and not find out? I know those aren't entirely fair questions, however, you have to consider that there are ways to resolve your issues.

Good Luck to you!!


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## jaidymama (Jun 18, 2005)

I also wanted to add that one way of keeping medical expenses down is to do a lot of your own research. The Kids With food allergies website would be a great resource for you. I think then you can pick and choose where you are spending your money... rather than letting the doctors take a guess.


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## mum2be (Jul 6, 2005)

Just got back from the x-ray...everything checked out okay...

As far as the money...yes, it's better to spend it and find an answer, but what do you do when you DON'T have any to spend? KWIM It just feels like we keep getting shuffled from doctor to doctor and nobody knows anything and then we end up paying for nothing.

i am awaiting my blood test results.

i checked out the yahoo group on EE and have found it quite interesting and scary!! i pray that this is not what we're dealing with...


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## mamaverdi (Apr 5, 2005)

I'm glad the xray was ok. What were they looking for with that? Was it of her whole body?

I don't have time right now, but there are ways to get money for healthcare when you have enough not to qualify for medicaid, but not enough to actually get help.

What industry/kind of work does your husband do? You?


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## granolalight (Nov 1, 2006)

that's all.


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## mum2be (Jul 6, 2005)

Quote:


Originally Posted by *mamaverdi* 
I'm glad the xray was ok. What were they looking for with that? Was it of her whole body?

I don't have time right now, but there are ways to get money for healthcare when you have enough not to qualify for medicaid, but not enough to actually get help.

What industry/kind of work does your husband do? You?


x-ray was looking for any type of abnormality in her abdomen (a twist in the intestines or something) that could cause pain.

My husband is a computer programmer. I am a SAHM, former full-time student and private piano instructor.


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## mamaverdi (Apr 5, 2005)

An xray probably won't see that. A CT scan would. Also a swallow study, upper GI, or upper endoscopy.

PM me about what kind of programming your dh does, company he works for, what the software does. I will ask my dh. We know of some foundations that help people with healthcare needs by giving them grants. But it's usually by industry.


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## jaidymama (Jun 18, 2005)

Just wanted to offer more encouragement and support. I know how it is with doctors and the whole shuffle...

Best of luck on your search for answers.


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## megincl (Sep 10, 2002)

just a little bump to see how things are going........

megin


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## mum2be (Jul 6, 2005)

Just wanted to update everyone. Dd is not happy today, so I don't have much time to type. Below is what I posted in the Healing the Gut tribe. It will at least give you an idea of what's going on







More later...

Quote:

I posted awhile ago about the issues we are having with dd (5 months) and "her" allergies. I haven't been posting in this thread for a bit because I was waiting for my "leaky gut" test to arrive from Genova Diagnostics and was waiting to take it and get the results.

Well, I got the results and my ND was shocked. Apparently the lactulose levels were something like 4.6 (when they should be under 1.2?) but my mannitol levels were just slightly high. The doctor at the labs actually wanted to know if I had been to any foreign countries and could have picked something up in the water to cause such high results









So, apparently it's pretty bad.

Here's my question: (And I know most everyone on this board believes that "breast is best" and so forth...so didn't I, but please put your opinions on that issue aside and tell me what you think we should do from a medical stand point.)

Dd's symptoms are getting worse. Her sleep is getting worse (I get 3-4 hours total per 24 hours). She is miserable, I am miserable.

Would it be beneficial for her to go on an elemental formula (Neocate, etc.) since I am dealing with this? THere's no telling if she has it too, right? Wouldn't the elemental formula allow her gut to heal if she does have leaky gut?

I'm at a loss here. I don't know what to do, but I do know what's happening now isn't working.

Another question:
What should _I_ be doing? I'm working with my ND on this one, but are there "leaky gut" specialists? The lab wants a stool sample too to rule out any bacteria, etc. as a possible source for my high levels on the LG test.

Any help would be GREATLY appreciated!!

I must go now and try to get dd to sleep _again!_


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## D_McG (Jun 12, 2006)

not popular advice on here.. but I personally would try a neocate trial (and pump to keep your supply up). Nothing to lose, IMO. If it doesn't work then you just go back to nursing.

I don't know anything about leaky gut but when I google I see that it's not a diagnosis that everyone puts weight in.

Please keep us posted.

FWIW - I am nursing a dairy and soy allergic baby. I had planned to do an elimination diet and if it didn't work I was going to do a neocate trial.


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## Kundalini-Mama (Jul 15, 2002)

Does anyone know what is in Neocate, like the actual ingredients? I'm wondering if this is something the OP could even put her daughter on. When my son was reacting to everything and I took 40 foods out of both of our diets (before we healed or leaky guts) it was recommended to me to look at this stuff and it was full of stuff he couldn't have







It wasn't an option.

And leaky gut is just starting to get recognized by mainstream doctors. Those of us w/leaky gut, have already recognized it. In fact, the last time I was at the vets he had all this information on his wall on leaky gut and its causes, its symtoms and how to heal the gut--funny how most MDs don't know.


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## Miatagirl (Feb 16, 2007)

Lots of suggestions!
I was noticing that the baby does sleep when you bounce on a ball in your arms. My DD was the same way. So, for sake of sanity, I bought an Amby bed, which is a bassinet on a spring, and it's like a bouncing hammock bed. We put it next to our bed and we just bounced her to sleep, and it works like if they start moving, they bounce themselves back to sleep. Or, you can just reach over and bounce for a while while laying in bed yourself... It sure worked for us. Our baby has a hard time falling to sleep on still surfaces. This bed worked wonders...But I do try to make her nap on our bed, so it is not foreign to her in the future... good luck!


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## Kundalini-Mama (Jul 15, 2002)

I didn't read that you said the babe would only sleep on the ball. My 5 yr old (w/the aforementioned leaky gut from hell) would only do that. We would bounce him for hours to get him to bed and sometimes in the middle of the night. Well, I totally forgot that we had to do that, so at least in couple of years you will forget this whole thing









I'm so glad you posted on the Healing the Gut thread. I'm so jealous that you have this information now, vs when my son was 4. I could have changed his diet so much and caused him less suffering







:


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