I am fortunate to have an amazing husband who works very hard so I am able to stay home with our kids. Now with Brian’s food allergies, being home is the safest place for him.
Since I am not working, I am the one to take Brian to his many specialists appointments. When Eosinophilic Esophagitis first was mentioned, I could not pronounce the word, let alone remember how to say it to tell Matt what others suspected based on Brian’s symptoms.
It was not until I received the first confirmation that Matt said, “I have that, too.”
Matt does not suffer from food allergies or show many of the symptoms Brian does. Over the last year, I have learned that those diagnosed as an adult have very different characteristics. Matt suffers from horrible reflux, sometimes causing him to dry heave, and had an endoscopy to confirm his diagnosis. He deals with horrible external allergies and an overactive immune system. Some foods may cause an increase in reflux, but technically he is not allergic to them. After being diagnosed, he took the recommended medication and now has endoscopies every few years to make sure his esophagus looks healthy.
I began my research of EoE after the first diagnosis, and learned that it is common for cases of EoE to run in a family. In some ways, I felt like this gave us a leg up because at least Matt knows what an eosinophil is, even if I don’t.
Of course, nothing about this disease is simple.
It can be diagnosed at any age and at various stages. Babies, toddlers and children seem to have more food allergies and difficulty eating. Young adults and adults tend to deal with more reflux and difficulty swallowing. Since there is still a lot for doctors and scientists to learn about this disease, none of this is a constant. Everything I have read lists plenty of symptoms and places them in Child vs Adult categories, but that doesn’t mean they cannot cross over to the other side.
While it is helpful to have an idea where Brian’s EoE came from and having a foundation to learn more, the major difficulty comes with Brian not being able to explain what he is feeling.
If Matt’s reflux begins to act up, he knows which medication to take and the problem is solved, at least for the time being. When Brian is in pain or doesn’t feel well, he acts out by aggressively hitting or throwing himself at the furniture, or being crankier than normal. He may point to his stomach and say hurt, or cry out when he is being changed, but we don’t always understand or know what to do to help him feel better. The most horrible feeling in the world is to watch your child writhe in pain and not have any idea of how to comfort him.
Matt once watched as I held Brian for almost an hour as he screamed and kicked. There wasn’t anything we could do to help him. If we had taken him to the hospital, they would have drugged him and put him through multiple tests, because, as we have learned quickly, very few people seem to know anything about this disease and helpful medications are limited.
After Brian’s second endoscopy/colonoscopy, Brian came out of anesthesia violent and I tried my best to hold him. Matt took a picture of Brian thrashing in my arms. When I asked him why, he said, “Someday he is going to be mean to you, and I want him to know what you went through for him.”
Someday Brian will grow up and may go through the teenage rebellious stage, but if that day comes and he is living a productive, healthy life, then that means we have found a solution to his pain. That will make all the struggles worth it.