Talk to me re: eosinophilic esophagitis

[Anonymous]

This has been floated as possibility for our child, but doctors are skeptical Bc he doesn’t present as severely as they typically see. If your child has this, how did the present and how are they doing now. I need some hope Bc we are are our wits end with feeding troubles. We have been doing Kennedy Krieger and I feel like we are getting nowhere.

[Anonymous]

Have you had an endoscopy performed?

[Anonymous]

EoE is definitely a spectrum and the presentation can vary. KKI was not helpful to us. Dr. Guerrerrio at Hopkins is their lead EoE person. I'd see if you can get a zoom consult with him.

[Anonymous]

achalasia? It is rare in kids. My DC presented at 7 and it took a while for a diagnosis.

[Anonymous]

Thanks all. No endoscopy yet, but am hoping GI will agree to order one. And another follow up question, what else was on the differential diagnosis?

[Anonymous]

My son’s EoE was confirmed via endoscopy culture samples. Initially it was super difficult to deal with. One late night as he was having a difficult EoE event, I googled “private chefs + food allergy” and found one in my area. She just finished culinary schooling and has been with us for about 15 months. She works with us in terms of menu, cooks at our house, cooks about 3weeks worth of meals, and washes and cleans kitchen after finishing. It is a bit expensive, but as far as we are concerns, he absolutely loves the food, and it removes the stress of food preparation for EoE.

[Anonymous]

^^ OMG whenI get rich, I"m doing that.

[Anonymous]

OP: I have EOE. It probably took 10 yrs to get dx.

Dx was done by counting eocinophiles in the esophagus upper, middle and lower part of it.

Treatment is imperfect and takes quite a bit of trial and error. There are things you can do now depending on how old kid is.

After dx I did these things
1. started taking a ppi 2x day (whatever is on the OTC package, double that).
2. started swallowing a corticosteroid. I use flovent, which is an inhailer. There's another method to mix some nasty stuff with artificial sweetner and I think that's what kids start with.
3. elimination diet. Eliminated 7 common allergy foods (or was it 9) for 2 weeks and added them back. Through this horrific process (I was hungry ALL THE TIME) I discovered my food allergies by adding one back at a time. I added soy back first b/c it's in everything processed. Then seafood/shellfish, ect. I"m allergic to dairy and since dairy is already inflammatory to many humans, you might see a difference if you cut dairy from child's diet but you'd have to do calcium supplements...and probably others.

There is no drug for EOE yet so my treatment plan is not perfect. One blessing of covid is I controlled my diet more and have had less EOE symptoms.

Since Dx, I've had 9 upper GIs...about 1 a year. I've been to the ER 3 times. I had an emergency upper GI once to remove something stuck in my esophagus. I have ... (sorry about this part) spit up and some of the finest restaurants in DC.

Good luck. I hope you find answers soon. My situation is not perfect but it's WAY better than before dx.

[Anonymous]

^^ I have also mastered soup and stew. I always have a lot of them on hand and in the freezer home-made. I never know when my ability to swallow will slow.

[Anonymous]

If you suspect EoE, you really need to get to a good pediatric GI and see if EoE is a possibility. If you start cutting foods out before an endoscopy, you won't get an accurate diagnosis. The endoscopy is the allergy test.

To answer the differential diagnosis question: our GI was also considering reflux or candida, along with EoE. EGD came back with EoE, and a separate pH probe showed reflux.

[Anonymous]

Thanks all. We have seen a few peds GIs over the years, but we were never bad enough to do endoscopy. At this point, he will barely swallow any food and we are pureeing everything and vomiting almost daily.

[Anonymous]

Anonymous wrote:Thanks all. We have seen a few peds GIs over the years, but we were never bad enough to do endoscopy. At this point, he will barely swallow any food and we are pureeing everything and vomiting almost daily.

I'm so feeling for you. We've been there. A good pediatric GI can really turn things around for you. It took us many tries over several years to find one. Wishing you all the best.

[Anonymous]

Bumping this. Our child was a stealth eoe. Constantly spitting saliva onto the neck of his shirt. Was 4. Had been in feeding therapy for years due to mechanics abs then limited preference. I thought it was a possibility years before we got a diagnosis. At the time, the allergist argued it was borderline. The diagnostic criteria moved after that - lower threshold of eosinophils being where they done belong.

Long story short. Along the way also discovered celiacs. That was a blow. Best tip - see if there are comorbid air allergens. Controlling seasonal allergies helps. There is some link between kids with asthma and eoe. I just tend to think any chronic inflammation is going to make others worse.

Ps - here is a case report on someone who got clinical remission of eoe by getting allergy shots.

Complete Remission of Eosinophilic Esophagitis with Multi-aeroallergen Subcutaneous Immunotherapy – A Case Report - PMC
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8195840/