Chris has been having a really hard time with his EOE. He is old enough now to realize he’s different, and that he can’t be like the other kids. He is realizing that he can’t have the food everyone else can have, and he wants to control it. I understand that. It sucks, a lot, not being able to eat all of the foods your friends are or even your brothers. It sucks being different. It just sucks. He’s cried so much because of this and then started to refuse to eat. He just didn’t want to do it anymore.
We saw his GI doctor before Christmas and told him all of this. He said he was okay with him taking the Christmas holidays off of the diet as long as he knows he has to go back on it. This made Chris really happy, and he was so carefree over the holidays. We still avoided his IGE allergies, but we were more relaxed on his diet. I saw glimpses of the happy Chris that has always been. It was really nice and relaxing.
Back to Reality
We saw his allergist the other day and she is not happy that Chris is off of his diet and gave him steroids, formula if he refuses to eat, and did blood work. We knew him going off of his diet wasn’t the best idea but we were trying to balance his quality of life with this horrible disease. Well, his blood work came back and now his overall blood Eosinophil level is 14%. Normal Eosinophil level is 0-3%. His body is in a huge flare, and I feel like complete crap that I let this happen.
How do you handle this? How do you know what’s best? When their mental and emotional health suffers, do you tell them too bad? Suck it up? Keep going? Do you give in and give them a break? How do you handle it? I am having a lot of guilt knowing that I am the reason why his body is flaring. I am the reason why he feels bad. I shouldn’t have given in. I should have kept him on the diet. I should have pushed him harder. I try really hard to give him a say so on his treatments. I try hard to give him a say so in food choices. There’s so much in his life that’s out of control, so I do try to give him control as much as possible. I chose wrong this time, and he is the one paying the price.
It’s back on the diet. Back on the steroids. I am praying the steroids are gentle on him. The last dosing wasn’t, but we don’t have any options right now. We have to do the steroids and the diet. We have to get him under control and healthy, no matter what I want. This isn’t an option. It’s a must. We will keep fighting. One day I pray there is a cure for his horrible disease, but until then we do what we have to do to keep him as healthy as we can.
We will fight. We will win.