Does Anyone Know a Child with Eosinophilic Esophagitis (EE)?

Hi, My son has EE. My son got sick when he was 10 months old and we got our diagnosis when he was 22 months old. EE is a very specialized disease and most physicians don't know how to treat it appropriately. Most families have to travel for treatment. The top facilities are Cincinatti Childrens and Children's Hospital of Pennsylvania in Philly. Be careful with who you see, it's a bit of a long haul after diagnosis.

I would recommend you go to apfed.org or cured.org and get more info. Both sites have tons of info. The EE community is pretty tight knit....the moms bond together strongly.

If you say that you just got a diagnosis, I'm guessing that you got a scope with positive biopsy results. If so, your next step is to get the three types of allergy testing. Your son will have RAST testing (blood), prick testing (traditional dermal testing) but he also has to have something called patch testing. Make sure that the patch testing is done by someone with expertise in this field.

If you are lucky, you will get some positive results to this testing. If you do, the doctors will have you eliminate all of those foods from your son's diet and will then re-scope to see what the results are. If there are no conclusive results, they usually do an elimination diet where they will eliminate the most common allergy foods....soy, wheat, milk, eggs, peanuts, shellfish, and a couple of others. The other thing they may do is to pull all food, but that's usually a step down the road a bit. It sounds awful, but it gets better.

My son currently has eliminated all beef, chicken, turkey, eggs, milk, tree nuts, peanuts, peas, pears, bananas and chocolate from his diet. He drinks a special formula to get his nutrients. He's a happy, healthy looking five year old.

I'm not going to lie and say that it isn't overwhelming, it is. Some days are good days and some bad. There are lots of other families out there who are going through the same thing. Facebook has several support pages. Good luck!

The boy I know with this also has a pretty severe case of it, live in Maryland.

So far, his mom has been trying to raise awareness about this. I know she's found support and resouces online, and by joining facebooks groups devoted to this. I know she also is somewhat involved with APFED, a non-profit promoting and education and research for eosinophilic disorders. I have asked her if she has any additional resouces to steer you towards.

Her response was - "Is she on facebook? tell her to friend me and I'll have her in touch with about 20 moms in less than a day.

She should also go to APFED (http://www.facebook.com/l/2b0e3;apfed.org) and check it out. The other support group is CURED. I've actually found facebook to be the best. How old is her son? I can talk to her directly too...just let me know if that would help."

I wish I could offer you some help closer to home, but I wanted you to know you are not alone. My heart goes out to your son and your family.

I really don't know anything about EE, but would like to reccommend an allergist:
Dr. Richard Cannon in St. Charles. My daughter and I both go to him. He's an older gentleman who also teaches allergists at SLU (I think that's the college). He used to be a pediatritian, so he has a great bedside manner with kids.

Hi J., When my daughter was a baby, one of the allergists we saw said my daughter might have EE, but her GI didn't test her because she didn't present with typical symptoms (she had silent reflux but no swallowing troubles or throwing up) and he said if she was diagnosed with it, all he could do for her was have her avoid her problem foods, and we were doing that anyway (or trying to). Anyway, we really liked our GI doc, Dr. Foy at Cardinal Glennon if you're in St. Louis. We've seen a couple of allergists, but neither of them were any help to us (after her allergy tests were essentially negative, the first doc told me to "let her eat whatever she wants". In other words, I'm a crazy mom) We pretty much had to figure out the allergy part on our own and my daughter is doing so much better. Good luck to you. C. D.