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Allergies and Eosinophilic Esophagitis (EE)

post #1 of 5
Thread Starter 

My 4.5 yo was recently diagnosed with EE, and has undergone a lot of allergy testing to see what might be a trigger for the EE.  As of today, he has tested positive for the following:

 

Chocolate

Apple

Orange

Barley

Carrot

Egg Yolk (not the whites)

Sugar Beet

Sugarcane

White Fish

 

Does anyone have any experience with either EE or any of these allergies, specifically the egg yolk, sugar beet, or sugarcane? I'm at a loss as to how to feed my already picky eater.  He won't eat any, ANY, fruits or veggies unless in juice form, no meat other than chicken or fish sticks (both must be breaded). He lives basically on a diet consisting of chicken nuggets, fish sticks (sometimes), mac & cheese, peanut butter sandwiches (no jelly), breakfast foods (cereal, waffles, pancakes, french toast), granola bars, and fruit snacks.  We supplement with Pediasure (milk and clear) and try to get him to take multivitamins when he is tolerant to the idea. I'm thinking between the egg yolk and sugar allergies, we are going to have to make some drastic dietary changes. He doesn't do well with changes and is very stubborn about what he'll even consider trying.

 

I'm freaking out a bit and could use some support and resources to guide me.  Thanks all!

post #2 of 5
Have you considered feeding therapy? A feeding therapist can help him deal with the trying new things bit, as he's clearly developed this pickiness for a legitimate medical reason. Feeding therapists have experience helping children with medical conditions like this and can definitely help work with you on identifying how to try new things. I'd also recommend finding a nutritionist who can look at his diet and suggest ways to boost calories or certain nutrients, as needed. You might also want to post in the Special Needs forum, as maybe someone there has been through something similar?
post #3 of 5
Thread Starter 

Thanks so much for the reply.  Today I called my son's PCM to see them about getting a referral for a dietician.  Is that like a feeding specialist or nutritionist? I'll definitely try the special needs forum and see what they have to say over there.  Thanks again for your response!

post #4 of 5
He's probably being "picky" because his body knows that the food is causing him pain, whether he complains about it or not. It's not a behavior issue, and most likely not a feeding issue.

Milk is THE #1 trigger for EoE, so if you're looking to manage the disease with diet (as opposed to swallowed/topical steroids), that would be the first thing you should remove. Studies have shown that removing the top 6/8 food allergens have had good results for EoE, so that would be another good place to start. You might also consider supplementing with an elemental formula (Neocate Jr, Elecare, or Neocate Splash) if you're worried about his nutrition. http://apfed.org is a great place for information, and Facebook has a lot of support groups that are great. I run a blog for our local (WA state) EGID support group, and I try to keep it updated with all the current research- www.empowerwashington.org
post #5 of 5
P.S. I don't check in here often anymore (this post actually popped up in my saved Google search for EGID stuff), so feel free to send me a PM if you have any questions about my post.
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