I can’t find the switch to turn my brain off. It is 4:30 a.m. and I am still wide awake. Here is what I am thinking:
Finally, after four very long years, there is a possibility that Wesley may have outgrown some or all of his food allergies. We have been waiting to get all of the immunosuppressants out of his system so that he can be tested.
It really and truly has always felt like this day would never come.
Last week I called his allergist and made an appointment for Monday. I talked to her later on Friday and she said if we could get blood work done that day, he could do one oral food challenge at his appointment if the allergy “markers” weren’t there.
Oh, I was SO excited. I was at work, but I immediately made arrangements to take the kid to get blood work. Come to find out, it has to be sent out of town and we won’t know until Wednesday. So, our appointment will be Wednesday.
It is just such a good thing to think about. Wow, we have been so consumed with every bite that our kid eats and even what we eat for so long, it is nice to ponder that maybe, just maybe our kid can eat like everybody else’s kid does. People won’t think we are overreacting. When we go to restaurants we won’t have to ask for the manager and tell him fifteen times that our kid could die if he doesn’t cook the food the way we tell him to. If we eat cereal with real milk, we won’t have to wash our mouth and quarantine everything that touched the milk. In fact, it is very rare that we even own cow’s milk anymore. I have tried several times to completely ban it from the house. We have probably only bought eggs about five times in these last four years because it is so scary to make sure all the egg is cleaned off even before we put it in the dishwasher.
We realized that Wesley had a problem very early. In the NICU, he couldn’t nurse so I pumped. They gave him my milk, but continued to push me to add formula so that he would grow faster. I refused for several weeks until they finally made me feel like I was starving my child. (Which I definitely wasn’t.) So, I gave the okay to mix formula in. It made him very sick. He got NEC and was npo for seven days. Then THEY were starving my child. Err, makes me mad to even think about it.
Back on subject..
So after he came home and continued to grow, we did what a lot of parents do. He was probably six months old and we were eating ice cream. We put a little in his mouth to see if he liked it. Not long after, he had a rash around his mouth. Not a big deal. I never suspected a serious allergy and we moved on with our life.
In the next few months he would get a small rash around his mouth occasionally after eating. It concerned me, but not much because the rash was the only symptom. Then, one night we had friends over and ordered pizza. Wesley was just a little over a year old and had a couple of little teeth. I gave him a pizza crust to chew on. About an hour later, his face was crazy swollen. His eyes almost swelled shut. He was wheezing.
I was a big dummy. He was having an anaphylactic reaction. I really didn’t think that could happen unless you had a nut allergy. We called the on call pediatrician. It was about 11:00 at night. He told me he was having an allergic reaction, go straight to the emergency room. I still wasn’t even that worried about it. I really didn’t know how serious it was. Well, his breathing kept getting worse and his lips were turning blue by the time we got there. The next week, he was allergy tested and here we are.
Milk, soy and egg.
Once, he drank some of my iced coffee through a straw. It had cream in it. He started reacting and I had to use the EpiPen. Not long after this, he had a cup of milk spilled on him. On his body, everywhere the milk had touched, (which was most of his body) looked like it had been burned. Another ER visit. And that wasn’t even from ingesting it. It was skin contact, and that was the beginning of the Arnett house milk ban.
Nevertheless, I have been very diligent to keep my child safe from these foods that could kill him.
So, all of these nice thoughts have been going through my head. I keep thinking of all the things that he has never had and how I want him to have them all. I keep imagining what if he has only outgrown one allergen. It would open up a whole new menu for our kid. I am just seriously overjoyed.
But then, I think, how can this even be possible. How can something so deadly just be outgrown? Just like that? Apparently it happens. In fact, by the time children are five, and Wesley is, they have a 90% chance of being allergy free. Except for peanuts. Most of the time peanut allergies are for life. Thankfully, Wes isn’t allergic to peanuts.
Wesley is pretty dern ecstatic about this allergy test too. After he had rituximab, we started to realize that if he could just stay in remission long enough, he would be able to be tested. I started talking about it to him about a month ago. He talks about it very often. We go to the store and read the ingredients and daydream of what he could eat if only he just outgrew soy. He has been talking about having his allergy test since I told him.
I was at work when I found out he needed blood work on Friday. I called the house to tell my mother-in-law to take him to the lab. I talked to Wesley and he normally hates to know he is getting blood work. He was SO happy!
But, little did I know that my kid is just as stressed out about this as me, maybe even more so. Last night we were going to sleep and he was talking a lot. Then he kind of got sad and tears were welling up in his eyes. He asked me how did I know that he wouldn’t die when we do the food challenge. I told him his doctor would be very certain that it was safe before we try it. I reminded him how we did the peanut challenge. I told him if he had a reaction, we have medicine and he wouldn’t die. He cried.
And I think, this is all he has ever known. He is an awesome self-advocate. I have taught him how serious food allergies are. How scared my baby must to go against every thing he has been taught.
Boy does it break my heart that my little boy, who should be carefree, is worrying about such a thing. He has been through so much in his short little five years. He doesn’t even realize it. It is all just normal to him…. Until we tell him he can eat an allergen.
Well, that is yet to be seen. We have to get the blood work back first.
So this is what I am thinking and why I am still awake at the time that most people are just waking up from their good night’s sleep.