Eosinophilic Esophagitis or EoE for short. Try and say that one fast, it's only 12 syllables. EOE is the fancy title for what Jackson has recently been officially diagnosed with. After over a year of constant chest, belly and throat pain, as well as multiple tests, his gastrointestinal doctor informed me last week that his most recent endoscopy results do indeed confirm this.
What is EoE? EoE is a chronic disease of the esophagus. White blood cells called eosinophils build up in your esophagus. This causes damage and inflammation, which can cause pain and may lead to trouble swallowing and food getting stuck in your throat. It's a rare and pretty newly recognized autoimmune disease. Most people think they have acid reflux and don't find out they even have this until they end up in the emergency room with food lodged in their esophagus. We were pretty lucky to find out about this before Jackson ended up in the ER.
Rewind to last year about this time. Jackson's sophomore year had just started. He started complaining that his chest, belly, and bowels hurt a lot. He started getting a lot of anxiety and would station himself in the bathroom for long lengths of time. He soon started missing lots of school and everything just spiraled. I finally took him to see the pediatrician who ordered a large work-up of blood and stool samples. Preliminary results showed he was highly allergic to a lot of foods (especially eggs) and that he potentially had H-pylori, a type of bacteria that lives in your digestive tract.
By this time, he was pretty much absent everyday from school and would barely even leave his room. He was referred to a gastrointestinal doctor and I had to speak with the school about putting him on some sort of hybrid/online plan so that he could make up everything he had been missing. Shortly after his extensive GI doctor appointment, Jackson had to go in for an endoscopy and colonoscopy. This doctor also suspected H-plyori or even Giradia, a microscopic parasite in his intestines. He wasn't sure if his throat/chest pain was associated with the stomach issues.
Those results showed that he did not have Giradia or anything wrong with his bowels and colon. His upper stomach area did, however, test positive for H-pylori and the doctor suspected EoE after seeing how swollen his esophagus was. He was put on 80mg of omniprezole and was told to follow-up after 3 months. Then COVID hit. His next two appointments were cancelled and we had to do one on the phone. Jackson still complained of all the same symptoms though his anxiety and bowel issues seemed to magically clear up. We finally were able to schedule his next endoscopy and that brings us back to today. His H-pylori is now gone, he DOES NOT have any acid reflux (that some people thought), but he DOES indeed have EoE.
The omniprezole that he has taken the past 6 months has been ineffective and his eosinophils have actually increased more than expected. Tonight he started a new course of medication called Budesonide. This medicine has to be mixed into 5 mL of maple syrup twice a day. He cannot eat or drink for 1-2 hours after drinking so it can stay coated on his esophagus for as long as possible. He also has to brush immediately following so he doesn't develop thrush in his mouth. On top of this, he has been referred to the Eosinophilic Gastrointestinal Disease Clinic at Phoenix Children's Hospital. There are only about 5 of these clinics across the country and we are fortunate to have one so close. They will conduct a more thorough, in-depth food allergy test and will help design the course of action Jackson will have to follow going forward.
This has been a frustrating year. I never quite knew what to believe with Jackson. I knew he didn't feel well, but I also thought he milked it a lot too, especially when it came to school. His dad passed it off as just acid reflux and "here, take a TUMS." I am glad that modern medicine has allowed us to finally get the help Jackson needs. I am cautiously optimistic that this new medicine will help and that Jackson will be able to control his condition without any future surgeries or complications.
