eosinophilic oesophagitis

[KasiaUK]

Hello,

My 11 year old son has recently been diagnosed with EoE. Anyone out there with the same condition?

[13yroldson]

Yes! My 14 year old son was recently diagnosed Although has been having problems for years. we finally got a diagnosis. After seeing so many doctors And 2 endoscopy procedures it was actually an allergist that figured it out. It's very hard on him. He has missed so much school that he has been held back twice And yes we even tried home schooling. at this point he refuses to see any more doctors or take any more medications. School is getting ready to start and I just hope and pray that he understands everything enough now That he can get through it.

[13yroldson in reply to 13yroldson]

Also, about the medications, he has a hard time taking the pills they come right backup.

[KasiaUK]

Sorry to hear about your son’s struggle. Have you guys tried elimination diet? We are currently third month on this diet and it has improve my son’s food swallowing 100% but he is still struggling with coughing after food, literally after every meal. Have you tried steroids? We are waiting for nhs to approve the prescription and hopefully will start the treatment next week. What are your son’s main symptoms?

[13yroldson in reply to KasiaUK]

We have tried elimination diet and although it wasn't A cure it did help him hone in on his senses to the point that as soon as something bad went into his mouth he knew right away it was going to hurt him. But As a teenager sometimes she just doesn't care because he wants to eat it so bad. The 1st diagnoses tlwas that it could be a gluten allergy. He was gluten free for 6 months and that helped tremendously and then it just stopped making a difference 😕. What grade is your son and? Are you concerned about him making it to school?

[KasiaUK in reply to 13yroldson]

Have you tried budesonide slurry?

[13yroldson in reply to KasiaUK]

What is that?

[KasiaUK in reply to 13yroldson]

That is the only known EoE treatment for children. You mix budesonide nebuliser vials with Splenda and give it to your child. Perhaps it would be worth mentioning it to your son’s consultant. I hope he will feel better very soon

[13yroldson in reply to KasiaUK]

I most certainly will. He sees the gastro doctor tomorrow. Thanks for the tip!

[KasiaUK in reply to 13yroldson]

That’s perfect than!!! Let me know what they said. Here is the link that might help you to understand the treatment and ask the consultant: eosinophilicesophagitishome...

Best of luck for tomorrow and let me know please

[13yroldson in reply to 13yroldson]

I can't remember if he has tried steroids. They have had him on so many different medications. His semptam's are coughing after eating, Hard time swallowing, burning throat, chest and stomach, Sharp pains upper left chest area, Nausea. Those are a few that come to mind. And yours?

[KasiaUK in reply to 13yroldson]

At the moment, we have cough after food only. That’s the only symptom we have. We have stopped oats, onions, celery, carrots as well as the food from elimination diet. Are you guys in UK or USA?

[13yroldson in reply to KasiaUK]

USA

[KasiaUK]

Luckily, the elimination diet and high strength of steroid slurry are working for us. At the moment he is swallowing fine. We are stopping steroids in October and will start reintroducing the foods. He is okay to go to school thank god, he is in year 7.

[Charto1979]

Hi Kasia UK,

I'm an adult with EoE but I had it since I was 8, undiagnosed until 34. My 10 year old is currently showing symptoms and the only way I could get the gastrologist to take notice was mentioning my own diagnosis. She's due her first scope in December and is in high strength omeprazole.

Her omeprazole capsules can be opened and mixed with water so she can swallow easily. Don't know if you've tried this?

She is naturally a picky eater and it's related to texture of foods which I think has to so with swallowing ability.

Myself, I'm on omeprazole, budenoside inhaler (brown) which I swallow not inhale. The NHS don't do the 6 food elimination diet but I managed this myself and now avoid wheat, dairy, eggs ,nuts, soy and fish. With the combination of steroid and diet I can be 100% symptom free. I occasionally get contamination though and can instantly know as I suddenly lose the ability to swallow and I get throat swelling and pain.

I hope my daughter doesn't have this but it's looking very likely as she complains of all the pains and food getting stuck. Luckily she is not scared of the medications and procedures as shes used to seeing me with them.

I would seriously check out the 6 food elimination diet online or mention to your gastro team. Hopefully you might get a sympathetic doctor (I had to go private to get diagnosed as NHS misdiagnosed me as having anxiety for years).

Best of luck.

[KasiaUK in reply to Charto1979]

Hello, thank you for your message. Yes, for us, the six elimination diet is working as well in terms of swallowing issues. The only symptom we are now left with is cough. I’m glad swallowing budesonide inhaler is working for you, I don’t believe much of the product coats your oesophagus when swallowing the inhaler though. See if you are still asymptomatic without swallowing the inhaler. You never know. Also, make sure you rinse your mouth after the steroid Inhaler as this can cause unpleasant oral thrush. Let me know how the elimination diet works for your daughter. As for NHS not doing the diet, the truth it, the GP doesn’t have much knowledge about the condition and unless you see hospital gastro consultant no one will mention it to you.

My son is due to endoscopy in December too and hopefully we can soon reintroduce the products into his diet.

Stay EoE free and all the best for your daughter.

[Charto1979 in reply to KasiaUK]

Thanks KasiaUK, I hope your sons Endoscopy all goes well.....

[JulesUK in reply to Charto1979]

Hi sorry to jump on the original thread but wondered Charto1979 if I could pm you so as not to distract from the original question, I’m interested in your misdiagnosis regarding anxiety.

[Charto1979 in reply to JulesUK]

Sure that would be fine JulesUK - I very rarely find anyone to talk about it as not many people have ever heard of the condition (GP's included!)

[13yroldson in reply to Charto1979]

Well of course there is some anxiety involved. I mean when you feel sick for so long depression and anxiety set in no matter what age Then they want to add another doctor to the list, a therapist which kids don't really understand.

[13yroldson]

Everyone seems to be talking only about the throat and coughing issues. Is there no one with the stomach and chest pain problems?

[KasiaUK in reply to 13yroldson]

My son hasn’t had these symptoms but I’m guessing these symptoms could also be related to EoE. Double check with the consultant. Perhaps PPI’s or Ranitidine could help with this issue.

[13yroldson in reply to KasiaUK]

Maybe they are symptoms from the Gerd he has been diagnosed with us well.

[13yroldson in reply to 13yroldson]

Absolutely, my 14 year old has severe stomach aches with nausea and that is baseline. He has sharp shooting pains in the upper left quadrant of chest as well. Hes kind of gotten used to the hard to swallow and coughing after eating thing. He takes Omeprazole Which helps a very little bit but better than nothing. They just added Gabapentin to his med list... Seems to be helping some.

[Ticaboorhino in reply to 13yroldson]

I am in the process of ruling out E of E. I don't get food stick in my throat, but I have chest pressure most of the time after I eat. I was diagnosed with eosinophilic asthma over a year ago. Taking Fasenra. Asthma pulmonary function tests were better than usual. Ruled out heart, ruled out Pulmonary embolism. It feels like someone is stepping on my chest. Incapacitating. How bad is your chest pressure?

[RaiMusk in reply to 13yroldson]

Hi,

My son was diagnosed with EoE and EG - the G is for gastritis - ie his stomach. That was 3.5 years ago.

Luckily we were able to control the EG by eliminating gluten from his diet. (He has severe food allergies causing anaphylactic shock to dairy, eggs, nuts, soya, white fish so they were all ready absent from his diet.)

We manage the EoE with budesonide

He is getting healthier and stronger every day and is growing,

We are in the UK.

The EG is diagnosed and checked the same way as the EoE - via endoscopy and counting the number of eoensophils.

Hope that helps a bit

Cheers

[13yroldson in reply to RaiMusk]

I found the nose spray over the counter yesterday. Going to have him try it when he gets chest pains. Figure it couldn't hurt until we see the doctor.