Anyone with experience with EoE?

[FightingforJo]

It has been 18 months since my daughter's CD diagnosis. So it was time for a re-scope to see if the outside signs of "clinical remission" were matching what it looked like on her insides. Yesterday was upper endoscopy and colonoscopy day. What these kiddos go through and handle like champs just amazes me!!!

Good news ... the inflammation is being well controlled with Remicade and MTX! There is some scarring, but her GI said she is scarring "the right way" ... outward and flat, rather than inward/narrowing. So we were very pleased that the aggressive way we started treating her seems to be doing the trick.

On the other hand ... her GI found something else that we were not expecting. Some white areas and furrowing in her esophagus that she expects is eosinophilic esophagitis (EoE). She is sending tissue off to pathology to be sure and we will know next week. It is not related to CD, but unfortunately may just be something else my sweet girl has to deal with It is allergen related, and she has had allergies and asthma her whole life (went off allergy shots and asthma meds about 2 years ago because she was symptom free and wanted to try and be med free) so not sure if this has been an issue all along with her and the steroidal asthma meds masked it??

I am praying that the pathology says perhaps this is just a yeast build-up due to the suppressed immune system, but it sounded like her GI was pretty sure it is EoE.

Wondering if any of you have experience with EoE in your kiddos?? Treatments that have worked?

 

[my little penguin]

Parents of kids with food allergies has a great forum on EoE
Apfed and cure are good sites as well

EoE can be managed through diet (top eight allergen free)
Swallowed steriod slurries or combo of both


Any food can be a EoE trigger
Inhaled corticosteroids don't treat EoE
You would need to make a slurry of the steriod plus Splenda and swallow it


Some kids have many food triggers even with steriods and need to go on an all elemental diet
And trial 1-3 Foods for a period of three months then scope
Keep adding food that way till they have a full diet

So a kids may trial pork /potato and grapes


https://community.kidswithfoodaller...esources-egid-celiac-crohn-s-fpies-and-gerd-1

http://apfed.org

https://s0www.utdlab.com/contents/image.do?imageKey=GAST/58642

Good luck

 

[Maya142]

I'm glad her IBD is under control. Sorry to hear about the new diagnosis - poor kiddo . I will hope it is just yeast and "fixable" versus another chronic illness!! Fingers crossed!!

 

[mamalana]

It has been 18 months since my daughter's CD diagnosis. So it was time for a re-scope to see if the outside signs of "clinical remission" were matching what it looked like on her insides. Yesterday was upper endoscopy and colonoscopy day. What these kiddos go through and handle like champs just amazes me!!!



Good news ... the inflammation is being well controlled with Remicade and MTX! There is some scarring, but her GI said she is scarring "the right way" ... outward and flat, rather than inward/narrowing. So we were very pleased that the aggressive way we started treating her seems to be doing the trick.



On the other hand ... her GI found something else that we were not expecting. Some white areas and furrowing in her esophagus that she expects is eosinophilic esophagitis (EoE). She is sending tissue off to pathology to be sure and we will know next week. It is not related to CD, but unfortunately may just be something else my sweet girl has to deal with It is allergen related, and she has had allergies and asthma her whole life (went off allergy shots and asthma meds about 2 years ago because she was symptom free and wanted to try and be med free) so not sure if this has been an issue all along with her and the steroidal asthma meds masked it??



I am praying that the pathology says perhaps this is just a yeast build-up due to the suppressed immune system, but it sounded like her GI was pretty sure it is EoE.



Wondering if any of you have experience with EoE in your kiddos?? Treatments that have worked?

So sorry to hear this! I, too, was diagnosed with EoE about two years after Crohn's diagnosis. So far, mine has been controlled with swallowed steroid therapy (simply spraying Flovent inhaler toward throat/ not inhaling it, but swallowing it down. My triggers were "dry" foods like rice, meat, and then sometimes even liquids! After starting treatments and learning to take small bites and chewing very well, things are under control! I wish the best for your littles!