Let the EoE Journey Begin

…well, I guess it technically already began years ago, but now we’re actually aware of it.

Axxle had his first appointment today with the EoE clinic at our Children’s hospital, where we met with his new GI doctor and discussed his plan of care moving forward! 

If you missed it, Axxle had an endoscopy with biopsies done in May was diagnosed with eosinophilic esophagitis (EoE for short.) 

This was a long time coming and took quite a while to figure out what was going on, but it was something we suspected from the beginning of all this. 

What is EoE?

In short, eosinophilic esophagitis is an allergic reaction in the esophagus usually triggered by food allergens. But it’s not like your typical food allergies in that you can easily test to see what it is you’re allergic to. 

Over time, without treatment, it can cause narrowing in your esophagus that can lead to food impaction, which can turn into a pretty dangerous situation.  

But also, it causes some pretty uncomfortable symptoms along the way, like vomiting, difficulty swallowing, and reflux symptoms. 

You can read more about it here!

Symptoms leading up to his EoE diagnosis:

Axxle started randomly vomiting in March 2023. After a few weeks, I took him to the pediatrician where they did some blood work, ultrasound and x-ray. Everything looked fine so they chocked it up to constipation, which didn’t feel right to me at all. So I pushed for a referral to GI to look more into the issue. 

It took a few months to get in with GI and by the time we did, his vomiting had mostly stopped. But we went ahead and went since he was still having issues with coughing and swallowing. So glad we did! She was very thorough and told us her suspicion of EoE.

A surprise diagnosis threw us off course:

He went through a few more in-depth tests and we eventually found a hiatal hernia. This is where things got a little tricky and confusing, so stay with me here LOL 

We were referred to a general surgeon to discuss if a surgical repair would be needed, as a hernia can also cause all the symptoms he’d been having. But his GI doctor was still suspicious that it could EoE. 

A couple months roll by and we finally get in with the surgeon. Turns out he strongly felt Axxle’s hernia was to blame and surgery was scheduled. Surgery week rolled around and our whole family got really sick…surgery cancelled. 

After we all recover, Axxle started showing some changes and symptoms that were possibly cardiac related and I didn’t feel comfortable rescheduling his hernia surgery just yet. And while waiting, something just started feeling really off in my mom-gut about the hernia repair. 

My brain was saying, “this is a major surgery, and EoE is still on the table as a possible cause. He could go through this big procedure and it all be for nothing if EoE is really to blame.”

So I finally went with my gut, contacted his GI doc and asked to do the endoscopy to check for EoE. A much simpler procedure just to make sure before undergoing serious surgery. If everything looked normal, then we’d proceed with the hernia repair. 

Trust your mom-gut.

Wow-gee-wiz, am I SO GLAD I trusted my mom-gut (yet again…). 

His GI doc didn’t even need the biopsies to tell that he had EoE (though she still took them for confirmation of course lol). She said he had all the classic signs of it just by looking at his esophagus. A few days later it was confirmed and she referred Axxle to the EoE clinic. 

So here’s the plan for EoE:

They started Axxle on a medication that will hopefully lessen his symptoms and help relieve the inflammation in his esophagus. Our biggest issue is getting him to take it…it doesn’t taste very good. If he continues to refuse, then we will attempt to get weekly injections covered by insurance. 

They want to do another endoscopy in 3-4 months to get another look at his esophagus and see if treatment is working. His dentist will also be joining in to get x-rays and an in-depth look at his teeth. This kid HATES the dentist and freaks from the moment we walk in the door. But with all the stomach acid from vomiting so much and the fact that he does not cooperate with brushing, we really need to get a good look. 

I think I’m more nervous about that than the endoscopy….

What’s next for Axxle:

Axxle will see immunology at the end of the month. Then cardio and genetics a few weeks later before his Make A Wish trip to Disney World! 

As always, we never want to forget to thank all of you guys for always supporting Axxle and our family. It means the world to us and it’s so encouraging knowing Axxle has an army of people praying for him. 

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