Pediatric Eosiniphilic Esophagitis and Eosiniphilic Duodenitis

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lilpig99:
For those wondering about EE symptoms in their child. Here is our story, vague as it is. Talking to your child's doctor is so important...no one else is going to come up to you and ask you about your child's gastrointestinal health!

He was scoped for EE at age 5 and it was negative. Many upset stomach complaints back then.

DS, 10 just dx with EE and ED this week. Eosiniphilic esophagitis and Eosiniphilic duodenitis.

Super picky eater for a good year or four. ;) Last six months so many things seemed to bother his 'chest'. "That makes my chest hurt" was a common sentence. With his severe food allergies (egg, peanut, tree nut, kiwi) I was on the lookout for a common thing that was making him not feel well...couldn't figure it out though. The last three months he started randomly vomiting after eating, not terribly frequent, but definitely not normal. His regular egg anaphylaxis is so very gastro-oriented, but this didn't involve major cramping or airway wheezing. He would feel a little nauseous and out it would come...along with TONS of mucous. So much so I ended up videoing the consistency of the vomit t so the doc could see it (gross). After vomiting, he was often better. He also more recently complained of not being able to swallow bread very well. He did not say he tasted acid in his mouth, or felt heartburn. But he called it 'pain in my chest'. Last weeks scope was very positive for EE and for ED. And I'm amazed at how much doctors have learned about this disease in even 5 years. Flovent and Prevacid ordered. More IgE testing to do. Food elimination once we find the culprits.

I hearby state I think he will show up allergic to wheat and dairy. I just bet. Now I wonder if eliminating the additional foods long-term will reduce his hyperactivity and distractibility as well? (adhd) Hoping he feels better soon. Trying to learn all about this disease....maybe you are too. :heart:

LinksEtc:
I'm sorry that you have to deal with this, but hopefully now that you have a diagnosis ... you can figure out the trigger food(s) & your ds will start to feel better.

:heart:

lilpig99:
My son scoped perfectly clean visually and histologically with no eosinophils in his esophagus, stomach, or duodenum after being on swallowed flovent and omeprazole for 8 week! After going off these meds and after embarking on a major elimination diet (eliminated @50 foods that came up positive on his skin/serum Ige testing), he STILL scoped with 80 eosinophils in the esophagus. This disease absolutely stinks. Most people can do well being off the top 6 EE triggers, but we can't even get that accomplished being off of 50 things!!?! And why on earth is my son making antibodies to absolutely everything? I'm at a loss.

I would take his EA, PA, TNA over this crap any day and twice on Wednesday. :rant:

Any other EE mom's out there, my heart and thoughts are with you. I had no idea....

ETA: on a positive note, his total IGE has gone down from 903 at dx to 671. In 5 months...I assume after eliminating all the Ige positive foods.

ETA: and we have been flirting with the idea of a g-tube due to significant weight loss, he is terribly thin and we are trying to supplement with prescription amino acid formula, which he hates. :(

lilpig99:
Initial dx biopsies, only off egg (ana), peanut, tn due to regular allergies :

Second bx results after being on swallowed steroids, omeprazole, and elimination diet (top 6 EE triggers, plus all other newly found ige positives):

Third bx results after going off all meds, but still being on major elimination diet (top 6 EE triggers, plus all other ige positives):

SilverLining:
Hi lilpig. I have no advice, just wanted to say I'm sorry your son (and you ) are going through this,