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0 pointsjkhn2y ago0 comments

You may want to look into dupixent or mometasone for elimination of your EoE symptoms.

My daughter was diagnosed around 2 years old and has been seeing a doctor at Boston Children’s hospital who is involved in EoE research. For a few years now she has been taking a compounded mometasone slurry daily which has kept all her symptoms at bay.

Now that she is 12 she is eligible for dupixent which the doctor has said she has hundreds of patients on who are in total remission.

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blue_dragon2y ago

Thanks for the suggestion. I have an appointment with my GI coming up soon and I'll definitely ask her about those. Dupixent in particular looks very promising!

I'm glad you got your daughter into treatment early. I'm ~30 years old and research and treatments for EoE weren't nearly as good when I was her age, so I wasn't properly diagnosed until my 20s. By that point, just eating normal meals was a struggle and I had to have an esophageal dilation before I finally got onto my current treatment plan. I hope she never has to experience that, it sucks.

Omeprazole and elimination diet work ok for me, but it's not anything close to remission. I can finally eat normally again, but I don't have a comprehensive list of my trigger foods, and I get painful flare-ups if I accidentally eat the wrong thing. I'll gladly give myself injections once per week for the rest of my life if it means no more intermittent chest pain and it lets me eat a normal cake on my birthday again.

jkhnOP2y ago

I can empathize with how difficult it must have been to get a diagnosis and treatment plan. In my daughters case her symptoms were coughing while eating and vomiting. Most of the doctors we saw at first suggested it was acid reflux and she should be on prilosec, but she continued to get sicker and sicker and we really had no idea what to feed her.

It turns out she is allergic to corn which is unfortunately in almost every manufactured food. We had to do a deep dive into corn and it's derivatives in order to avoid foods that would trigger her. Even things like citric acid can be triggers because of the way it is produced.

She's been doing great for a number of years on the mometasone and we are excited to start dupixent now that she is old enough.

I've been lurking HN for 14 years or so and never made an account but felt compelled after I read your comment because I know how tough EoE can be. Good luck with your treatment!

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