Possible Eosinophilic Disorder - Mothering Forums

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#1 of 6 Old 11-26-2013, 01:20 PM - Thread Starter
 
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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 6 Old 11-26-2013, 02:24 PM
 
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Did they test your LO for yeast/candida issues? They caused my oldest to have really strange sleep habits, he used to not sleep much at all, and to have foul smelling/icky stools. Once he was treated with biomedical  antifungals (nistatin without sugar in it) it totally changed things for him. I often wonder if the issue arose when I was given antibiotics for Strep B while in labor.

 

I don't have a lot of advice, other than to really press doctors to look into it- follow your gut, mama.

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#3 of 6 Old 11-26-2013, 04:07 PM - Thread Starter
 
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@mamakitsune - no, they haven't. worth exploring at our upcoming appointment! what's the test like? and candida in babies... is that different from thrush? does it cause gassy/tummy troubles? the nystatin- is that taken orally? sorry. you can see I don't know much about it smile.gif

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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#4 of 6 Old 11-26-2013, 04:29 PM
 
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I think they can test a stool sample- my DS didn't have "thrush" on his tongue. It was just like a major imbalance in his digestive track. I think for him they just suspected & treated it as a yeast overgrowth/ lack of 'good' bacteria. Nystatin is taken orally, there are different kinds- the one at most pharmacies is made with a sugar base and the one I eventually got at a compounding pharmacy was not sugar based (candida thrives on sugar so having a sugar base kind of contradicts it, though it still helps). It's just a possibility, It sounds like your LO is having some rough nights :( I hear more and more about babies having issues with reflux at night & such. Reflux can cause excess drool & reflux/excess drool can lead to yucky poops too. Arching back is often a sign of reflux too- but she's not spitting up much? Frantically nursing- have you thought about your milk supply?  When DS was little my milk supply started drying up at 4 months unexpectedly and he was always frantic and crying- HOWEVER, he lost a very noticeable amount of weight so it was apparent he wasn't getting enough to eat! Is she waking up all the time cosleeping? I just ask because DS3 is 18 mos and he STILL wakes up constantly in his own bed because he want sin mine. Even though his bed is a few feet away! When he was an infant it was about every hour. Just wanted in mama's bed. I really hope you get to the bottom of this- hang in there!

 

 I hope you figure it out soon! best wishes!

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#5 of 6 Old 12-02-2013, 03:51 PM
 
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To be fair, if they're testing the immune system the results will not be definitive or accurate until she's 2yo.  So just because she tested negative for something doesn't mean she IS negative for it.  Allergies are a function of the immune system and under the age of 2, that system is not particularly stable and in fact--still carrying maternal antibodies (this has nothing to do with breastfeeding--you don't pass antibodies that way).  Asthma is often connected to undiagnosed underlying food intolerances--so your family may even have some intolerances that they don't even realize are going on.

 

Unfortunately you're in a "try it and watch" age.  That being said, even after the age of 2--that is the gold standard for allergy testing.

 

And don't panic about EoE.  It's a very livable disorder.  They can scope her and look for the ridges, but you'd have likely noticed quite a bit of choking already.

 

You have a few options to try on your own.  You CAN to a total elimination diet and keep nursing her (and nursing is IDEAL here because there is just TOO MUCH stuff in the formulas to be able to really definitively nail things down there... speaking from experience on that one).  And I STRONGLY recommend keeping logs on her.  If you need one, pm me and I'll send you what I use with my clients.

 

Last, see if you can find a way to catch a nap.  You desperately need sleep.  You need to be able to focus.  I would also try to do some focused meditation (like the Chopra 21-day challenges they offer for free intermittently).  That will help you tons in trying to keep calm and get to sleep quick when you have the chance.

 

Hugs, mama.  It's a rough place to be.


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#6 of 6 Old 12-08-2013, 04:03 AM
 
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My kid had EoE and it took nearly 3 years to diagnose. It was a newer thing to a lot of doctors and they did not know to look for it. I wish they had found it sooner-- the treatment was simple-- an Elemental formula diet. And it doesn't have to be scary. Oftentimes they just put them on the formula and they get better immediately.

 

The scarier part is not knowing. I really would recommend a visit to a GI doc. They can do a scope and test for sure if it's EoE or just reflux (and "just" is not to minimize how challenging reflux is! My dd had that, too). Make sure you ask for a GI who knows to look for EoE. Our third GI doc knew what to look for. PM me if you have any questions.

BTW my EoE kid, who was a very severe case, is now almost 10 and doing just fine. She outgrew it.


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