As y’all know, we moved from MS to TX over the summer. Due to insurance, I had to get new referrals for C to see his old EOE/Allergist team and it took a while to get him in. Today we had his first of many appointments for allergies and EOE.
I was nervous to go. I hadn’t seen them since he was first diagnosed in 2014, and I admit, haven’t really been following EOE protocol to the T. He has been growing, thriving, and not exhibiting any outward signs of EOE like other kids. We had been careful with his anaphylactic allergies but for EOE, we had been taking a wait and see approach. It wasn’t until we made the ear infection connection that I really became serious about this. So anyhow, that’s why I was nervous. He isn’t on any allergy medication, or asthma medication, or anything. We have epi-pens, we have benadryl and albuterol. I just was taking the wait and see approach. I realize that’s not always the best but it is what it is.
They come in, and I apologize for it being so long and him not being on any medication, but because of the move blah blah blah. They were absolutely amazing and understanding. It was so nice being able to talk to an allergist who understands EOE and the intricacies of it. It was so nice having the doctor say “he’s not a normal child, he is not typical, and we will not be doing any immunotherapy testing on him.” (Immunotherapy food allergy testing is where you slowly introduce an allergen by mouth and build up immunities to an allergy. It works, but for EOE kids, it’s not a good thing to do.) She said that she didn’t want to do skin testing on him because he is so reactive right now and being off of medication for so long, he will be hyper reactive. She also didn’t have a fresh banana, and she said that’s the absolute best way to test an allergy. However, she did do blood testing and will determine which skin testing to do based on his levels for that. I am curious to see if he really is allergic to banana and latex, and to see how his blood levels have changed since his last blood test a year ago. I told her what happened the last time he had a skin test done (he threw up about 30 minutes after the test), and she said that can happen especially when they are positive to everything you test them for. She said his peanut allergy is absolutely anaphylactic and I absolutely did the right thing by using the Epi-Pen on him back in March when he reacted to the banana. It’s nice, but scary, to hear “you absolutely saved his life.”
Now here’s the EOE news. He sees the EOE team (herself, GI, dietician) March 13th. Since we know he has EOE, he’s been scoped on EOE protocol and had positive results, there’s no need to wait to see the EOE team to begin treatment. We are starting his elimination diet, based on patch test allergies and his IGE allergies. (For those who don’t know, EOE triggers a different allergic reaction system than IGE allergies.) He will have to avoid chicken, beef, dairy, corn, peanuts, tree nuts, and bananas. I think I’m missing one, but I know he can have wheat, he can have rice and potato. He can have eggs and seafood and pork. Yes his diet is going to be changed, and it’s going to be difficult but if this gives us a beginning to help him feel better overall, then it’s worth it. I would prefer to start with diet elimination, then add steroids, then whatever else, rather than start with the big guns.
It’s hard to see and to think of everything he has to go through. I often question and wonder why this is happening to him. Why do children get sick? Why do children have to suffer more than adults do? Children are innocents and is just plain not fair what some have to endure. I don’t want to make him go through these surgeries and elimination diets and other crap. I don’t want him to have to be basically a test subject for this disease, but if he can help others and help the doctors understand, is it worth it? Isn’t it worth it for him to be able to exist and enjoy life without feeling like crap?
If anyone has any good ideas for dairy free cheese, yogurt, bread? Um, how do I deal with no corn? He can have corn syrup and oil but nothing else corn. I need non beef and chicken meal plans. I need help cooking fish. I don’t do fish, but this is something I’m going to have to start cooking more of. HELP!!!!