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EoE Kids

JaysonandKristinJaysonandKristin member
in Food Allergy
My EoE son is 4.5, and was born with esophageal atresia and tracheoesophageal fistula. It seems that many kids born wih his birth defect also get EoE diagnoses later down the road. Nearly all of the EA/TEF kids are on a PPI, so symptoms are often masked during EGDs.
In any event, we got the diagnosis 8 weeks ago, and made the decision to manage purely by diet. Are any of you able to do the same, or is it a foregone conclusion that he will need a PPI or corticosteroid?
Anybody been able to target the allergens? If you have been living with this for any length of time would you share your experience, please? TIA
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Re: EoE Kids

  • aliandchrisaliandchris member
    Hello! I read this board as my 2.5 year old has peanut allergies but I myself have EoE. I didn't even know until last June, when I was rushing to finish dinner (my daughter was 5 weeks old) and a piece of chicken lodged in my esophagus. A GI scoped it out and found I had EoE. I tried 40mg 2x a day for 12 weeks and was scoped again....the PPI did nothing to reduce the eosinophils.nso, I'm on week 12 of a 12 week elimination diet (following the CHOC program...no wheat, dairy, soy, egg, peanut, tree nut, fish or shellfish). I'll be scoped and biopsies next week to ensure the eosinophils are gone and then start introducing each of the above one at a time for 6 weeks, be scoped again and add another. My GI said diet management it very hard for adults and even harder for kids but is the best way. Using inhaled corticosteroids for bursts has been shown to work but long term maintenance is basically a wait and see, repeat steroids, stop steroids, etc. I know that you're probably looking for kids' experiences but I hope this helps! I've read that wheat and dairy are usually the main issues so we'll see! I always had trouble swallowing food if the bites were too big but I would've never known had EoE if it weren't for the impaction. I'm still taking the PPI at 40mg 2x a day because they basically said it couldn't hurt. Best of luck to you and your little boy! PM me if you want brands and ideas for meals....I've become an expert :)
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  • aliandchrisaliandchris member
    I forgot to say that obviously, as you know, the elimination diet makes meal prep crucial. My husband is an amazing help but he and my children eat normally. So, in 12 weeks I've lost 20 lbs. Granted, i had a little baby weight but I'm 5'2" and 110 now. So be very careful of the inadvertent weight loss just due to lack of choices.
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