Possible eosinophilic disorder - Mothering Forums

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#1 of 2 Old 11-26-2013, 11:10 PM - Thread Starter
 
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(Cross posted in Special Needs Parenting - I think we've made the leap from High Needs Parent to realizing that LO has underlying health issues....)

Hello All,

I'm not sure if I really belong in this forum, but I've found myself REALLY needing some extra support lately with my daughter's health issues.

She has been a *very* poor sleeper since birth and seemed to really struggle with gassiness and (silent) reflux that made her very fussy. We thought something was off with her, but since the description "poor sleep, burps and farts a lot" describes most young infants, we didn't pursue anything healthwise. Up until around 5 months old, she would sleep very fitfully, preferred to be held while sleeping, and had painful wet burps. Her ped dismissed our concerns and halfheartedly offered a Zantac prescription, but we were reluctant to medicate her, especially since the pediatrician clearly thought we were overreacting. I tried eliminating dairy, and tried a total elimination diet, but couldn't pinpoint what exactly caused her to become so incredibly fussy and, honestly, couldn't handle being on such a strict diet while insanely sleep deprived and not getting clear results.

LO is 9 mo now, EBF, and still has very mucousy, foul smelling stools. (Varying from smelling like vinegar to smelling like feet). She also is very wakeful, will only nap in arms, and wakes every 10 minutes. The longest stretch she's ever slept is 3 hours, once. On very good nights she's up every hour. On bad nights, it's more like every 5 minutes (tossing, turning, arching her back, crying, farting, and frantically nursing). Lately we've seen more of the latter, and recently she's started crying through her sleep. We co-sleep to make things a bit easier, but it is still very very very hard to be getting such little sleep. Aside from the mucousy stool, general fussiness, and terrible sleeping, she has no other real symptoms that I know of. No weird rashes or anything, and she's usually not congested.

We tested two weeks ago for allergies, since they run on both sides of the family (severe asthma on both sides; peanuts, avocado, and banana on mine). I'd thought once (on embarking on the TED) that she may have allergies. Surely! They only tested the top 8 allergies, which she tested negative for except for egg white.

Last week she was teething and had a cold and had literally not slept in 24 hours. She was deliriously crying and since she'd had an ear infection when she cut her last tooth, we took her into the peds clinic to rule out an ear infection. She didn't have one, but the on call Ped was concerned with her level of crying. She said "this is not the cry of a normal teething baby with a cold. I see you tested recently for allergies. This reminds me of a couple cases I've had of EoE.... not to scare you or anything. I see you have an upcoming well baby exam, and I'll put a note for your assigned Ped to follow up on getting you guys set up with GI." She asked how baby was taking solids and I replied "she's not eating solids yet. We introduced them to her two months ago and make solids available at every meal time. We have tried to do baby led weaning, and so far she seems extremely interested in what we're eating, but after just one bite will turn her head and be done with whatever it is." The doc nodded and said that also seemed similar to her other cases.

Since then, of course, I've been researching eosinophilic disorders and scaring myself. I know it's possible she may not have EoE, especially since she doesn't have the issue with throwing up. But I do know, or feel, in my heart, that SOMETHING is wrong. She wakes up every five minutes! It's not normal, right? I second guess myself when people (or doctors) say things like "well, she's pleasant enough during the day. And nothing affects her through your breastmilk" But then THEY don't have to hold their crying baby all through the night.

I'm near hysterical with lack of sleep and while I wouldn't wish any disorder on my daughter, I really really want answers and to stop feeling like I'm crazy for thinking there's something wrong with her on top of the stress of not sleeping. Anyway, not sure what I'm looking for... maybe just a few suggestions? Commiseration? Thanks for reading.

24 years old. Central PA. Married to a medical student. DD1 - Valentine's Day 2013. treehugger.giflactivist.gifcaffix.gifdelayedvax.giffamilybed1.gifwhale.gif
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#2 of 2 Old 11-30-2013, 05:03 AM
 
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I think your post might have been missed so I am bumping it to be seen by the mamas in this forum. Wishing you well as you try to get this sorted out!  :Hug


 
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