Anyone have experience with Eosinophilic Esophagitis (EoE?)

[randomkid]

DD was just diagnosed with EoE a couple of months ago (via EGD with esophageal biopsy). We have no idea what is causing it. Allergy testing revealed only mild allergy to dust mites, no food allergies. We've only done skin test and blood work and I'm wondering if we need to pursue further testing. GI doc says sometimes we just don't know and just have to treat it. So, the treatment is Zantac ( because of associated reflux) and Pulmicort, swallowed. We are to mix artificial sweetner with the Pulmicort to make a slurry so it coats her esophagus. I hate giving her so much artificial sweetner and would like to know if I can use something else. Also, even though it's a low dose, the steroids make her wet the bed. I've been waking her at night to go potty, but then my sleep is disrupted. Sometimes, like tonight, I just stay up late unitl I take her, then I'm exhausted at work the next day.

Would just like to know if anyone has BTDT and what suggestions you might have as well as any other helpful advice.

Thanks!

[KpbS]

I remember your posts about your DD and her recent stomach problems/allergies. So glad you have some answers, even though they may feel like partial ones at this point! Are you familiar with Apfed? http://apfed.org/drupal/drupal/index.php They are the leading organization for EE and related conditions. CHOP (Children's Hospital of Philadelphia) and Cincinnati Children's are well respected in diagnosis and research but can have really long waits for new patients. Lots of good information though. Also it's my understanding that Kids With Food Allergies KWFA is a wealth of support http://www.kidswithfoodallergies.org/resourcespre.php?id=24 too.

Has she been tested for other environmental allergens--eg pollens, dander, molds, etc.? These, especially mold have a very strong EE link. Do you see a very good pediatric allergist? That would be my next stop for a complete panel (skin testing) to see if you can discover any other links.

I remember your posting about issues with remodeling--was it carpet? Attic troubles? Plumbing? All of these could be potential culprits for mold which can trigger EE. Any chance there are any unresolved structural issues with moisture/leaks/mold? Also could she be exposed to anything similar at school?

Please feel free to PM me if you'd like to chat. We have been down a similar road. Sending lots of :hug:.

[wendibird22]

No BTDT experience but wanted to recommend the boards over at celiac.com. There's a parents forum and quite a few of the kids are celiac/gluten intolerant and have EE.
http://www.celiac.com/gluten-free/forum/10-celiac-disease-parents-of-kids-or-babies-with-celiac-disease/

Here's results for a search on eosinophils: http://www.celiac.com/gluten-free/index.php?app=core&module=search&do=search&fromMainBar=1

Hugs, I hope you are able to find a good solution that works for you and her.

[hellbennt]

see my sig
you can do a search from the page
go to upper right-hand corner, click on search & then from drop-down menu I'd choose 6 months & OLDER