Eosinophilic Esophagitis (EOE)

Parent Q&A

  • Eosinophilic esophagitis

    (3 replies)

    My 6 year old was just diagnosed with Eosinophilic esophagitis. Unfortunately, I think it has been going on for years but was misdiagnosed over and over and at this point it is pretty serious. Can anyone out there share their experience of treatment and recovery/remission? It has been a long road and very stressful at times. My kid is currently struggling to get baby food down and I'm just feeling so sad and angry that this had to get to this point. Would love some words of wisdom and experience. Thank you so much in advance.

    RE: Eosinophilic esophagitis ()

    Hi - I know what you are going through, our youngest daughter (now 15) was dx when she was 6. Hopefully you are with a team that specializes in EGIDs. We're seen at UCSF by Dr. Wild and her team, and really like them. Our daughter scopes clear on a full diet taking the 'slurry' (pulmicort respules mixed with a thickening agent - we used applesauce instead of the recommended 10+ packets of splenda, though she is now using the flovent inhaler instead but has yet to be scoped on that), but not every child is as lucky. I have TONS more information and resources for you, including invaluable facebook groups (Eosiniphilic Family Support Network is the largest, but there's also a group for Norcal peeps.) Feel free to contact me: emily [at] emilyadesigns.com

    RE: Eosinophilic esophagitis ()

    I don't have personal experience, but have worked with soem children who have EE. Have you found this resource:  https://apfed.org/?

    If a feeding tube is suggested, know that for many families, it improves their life, so don't automatically discount the option. 

    RE: Eosinophilic esophagitis ()

    I’m so sorry that you’re going through this. My husband has a similar condition (achalasia) and we think my son might have it as well. We can’t speak to your son’s diagnosis, but I thought I’d share a few things my husband has figured out over the last 20 years. My husband always has an easier time eating food that is hot in temperature and not soupy/runny in texture. He also always has to drink a lot of cold, uncarbonated liquids with every meal (like 32-48ounces). Crunchy foods like potato chips are easier to get down than bread, but again everything requires a lot of cold liquid to push it down. Small, but frequent meals are a must for him.

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Questions

Eosinophilic esophagitis in 5 year old

Sept 2014

My son who is five just became diagnosed with Eosinophilic esophagitis, EOE. It is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus. EoE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.

I am wondering if anyone has information on this? How did your family adapt with cutting the six top food allergens. What advice could you give me. Are there alternative from of treatment that can help.

Thanks in advance. Rebecca


If you haven't already found this website, you might findit useful for dealing with allergen foods http://www.foodallergy.org/ RK


Hi- I was hoping you might get more responses to this, as I'd be interested in hearing how other families are handling EE. My now 10 year old son was diagnosed about 14 months ago, after trouble with food getting 'stuck' in his esophagus. Prior to this we'd had no indication that he had any allergies whatsoever (where as my other child has all sorts of environmental allergies.) We did blood tests, scratch tests and food patch tests--frankly all pretty miserable. He came out as allergic to basically everything. The Allergist Doc had some pretty extreme recommendations with regard to eliminating foods. On consultation with the GE Doc an our Pediatrician we decided to follow a more limited approach. We took him off of corn and wheat, and he's been on a topical steroid called Pulmacort as well as a reflux med. He's symptom free, and gaining some weight (which had been an issue). The moderator is welcome to share my email address with you and we can talk in person. I know I was ve ry distraught when first learning about this condition, but we are doing OK now. Stephanie


i'm late replying to this question because i already contacted the original poster directly. my 10yo daughter was dx w/ EoE in 2010. we are currently on our third GI (and happy!), as many doctors don't know how to properly diagnose or treat this disease. i have a TON of information and resources (which is why i didn't originally reply to the question) but as this disease is being diagnosed more frequently, i wanted to post at least a few resources for others.

  • familiarize yourself with the updated TIGERS consensus: http://download.journals.elsevierhealth.com/pdfs/journals/0091-6749/PIIS0091674911003733.pdf
  • visit http://curedfoundation.org/site/
  • also: http://apfed.org/drupal/drupal/index.php

There are facebook groups for EGIDs. most of these are 'closed' or 'secret' groups, so unless you are verified by the admin, you cannot find them or get in. there's also a great one for norcal people. emily


Gastroenterologist for eosinophilic esophagitis

Oct 2011

I didn't see any recent recommendations for a gastroenterologist who specializes in eosinophilic esophagitis. I am newly diagnosed and would like to find a doctor who would pursue the latest treatments for it. Does anyone have any ideas of more progressive GI doctors? Jen


i honestly don't know if there are any gastroenterologists in the bay area who specialize in EoE in adults, i've had a hard enough time finding one knowledgeable in treating children. (although it does present differently in adults and children, and the treatment varies greatly from person to person.) with that said, my dad loves his GI and says he knows a lot about EoE (dad does not have EoE). here is his contact info: john j. jolley, md 711 D st. suite 106 sn rafael, ca 94901 415 275 3030

i have a daughter dx w/ EoE (although she wasn't diagnosed correctly, which is another story, so we have lost time and have now put her on a high dose ppi, then will re scope and biopsy. neither her first or second pediatric gi did this, and this is protocal to confirm dx.)

you will also need an allergist, and preferably someone who can work together with your gi and also a nutritionist, depending on how many/what foods you need to eliminate. remember that IgE mediated allergic reactions are different than eos reactions and may not show up on traditional allergy testing. a lot is trial and error.

There are some great groups on facebook for information and support. you should also familiarize yourself with the 2011 consensus and TIGERS consensus. i've learned a lot since our 7yo daughter was dx a little over a year ago. emily