Since December, TJ has had three rounds of allergy testing through blood work. Today, will be round 4. TJ is currently allergic to dairy, eggs, wheat, barley, oats, tree nuts, peanuts, sesame, and coconut. He is no longer allergic to soy and peas.
Here is a quick recap:
Round 1 (December 2014): Initial testing to test for all of the foods in a jar of baby food that caused hives at day care. This is the round that told us that he was allergic to oats and barley. This was in addition to the already known allergies of dairy, eggs, wheat, tree nuts, and peanuts. Unfortunately, we found these out after his initial anaphylactic reaction to his first taste of yogurt aka scariest night of my life.
My Reaction: Whenever TJ is around, I put all of my energy into being happy around him. However, the second he is at day care or sleeping, I am a mess. I cried a lot through my winter break from work. Even after I went back to work, I cried when anyone asked me how TJ was and even when I was alone during my daily breaks. Honestly, my tears were constant because I was terrified of everything. From being along with TJ, to being the cause of these allergies, to any food he ate or I ate, regardless of blood testing, I was living in total fear.
Round 2 (January 2015): Since he was still having random hives and red rashes despite both of our elimination diets, I wanted to make sure that he was not allergic to soy since I was now consuming a lot of it. Soy had only been tested for with a skin test. This type of testing is not accurate for someone like TJ who has dermatographic urticaria as well. Because of this, TJ’s skin is hyper sensitive and reacts much more to irritation than the typical person’s skin. Through this testing, we found out that TJ was allergic to soy, sesame, and coconut.
My Reaction: I had been nursing TJ when I noticed these lab results had been posted to our online portal system. Before opening the results, I remember distinctly praying to God that if TJ was not allergic to soy or anything else new, we would be okay. I also promised that I would snap out of this world of depression and anxiety that I was living in. However, my plan was not the plan that God had for us. Instead, he tested positive for these allergies and we cut more and more out of our diets. I fell deeper into a black hole of anxiety as my fear intensified.
Round 3 (April 2015): I was still breastfeeding on an elimination diet of all of his allergies and TJ was eating the very basics: fruits, vegetables, some meat, buck wheat. All of his unsafe foods were tested and soy, sesame, and peanuts went down. Peas at a 0.5 was added to the unsafe list or so they thought. (Later, we learned after a food challenge that his body was not allergic to peas. Now, he loves and eats peas almost every day.) Dairy jumped up very high and eggs got slightly higher. The rest stayed about the same according to the numbers.
Unfortunately, we also learned that his hemoglobin/iron levels were slightly lower than they should be. After meeting with a nutritionist, our pediatrician, and two allergists about this, there were two different positions on what we should do about bringing this level up as quickly as possible. Some thought an iron supplement was crucial; however, in the end, we decided to follow our pediatrician’s stand on it. She strongly believed that the level was slightly low due to TJ’s very restricted diet. She wanted us to add more of the safe foods to his diet that could bring up this level such as beef, turkey, and iron fortified foods. It is important to explain how scary it was to even add these safe foods because of his eczema and skin sensitivity. Sometimes, even a safe food would cause his eczema to flare up a little bit.
My Reaction: By April, I had started to climb out of the hole that I had allowed my anxiety and fear to throw me into. Like I had done during other times of anxiety in my life, I began to retrain my brain and way of thinking. For every negative thought or worry I had, I made myself think of three positives ones. Instead of spending my time crying about our situation and that I could not change it, worrying about everything that could go wrong every day, I embraced myself in scripture and quotes about faith like the ones below.
I began to believe that God was going to perform a miracle and take all of TJ’s allergies away. I put all of my faith in the belief that He was going to do this. However, once again, I was thinking of only my timetable. I chose not to plan ahead or think about what our life would be like with a toddler with multiple food allergies. Instead, I trusted that all of them would miraculously disappear and be revealed through this round of testing. While it may make me look beyond naive, uneducated, and even delusional about food allergies and the scientific facts, it was what I needed to do at that time to gain strength to climb, step by step, out of the darkness I was living in. I needed to do it for TJ, for my husband, for myself, for us. Therefore, when I got those results, I cried my eyes out to some amazing people at work in an auditorium full of middle school students. (Thanks again guys for always listening!) I cried not because I didn’t have faith anymore but instead that I knew God was challenging me, he had different plans much bigger than mine. I needed to stop fighting them and instead, once again embrace them by continuing this journey.
“Let your faith be bigger than your fear.”
“Faith – it does not make things easy. It makes them possible.”
“Faith is not believing that God can. It’s knowing that He will.”
“Faith is taking the first step even when you don’t see the whole staircase.”
“With God, all things are possible.” – Matthew 19:26
Round 4 (August 2015): This afternoon will be round 4, mainly to test his hemoglobin/iron levels to make sure that with his broadened diet, his levels are in the normal range and where they should be again. In addition, our allergist is testing wheat, sesame, barley, and rye as well as the components of dairy and peanuts. We asked to test wheat and sesame because those are potentially the next two food challenges. After the coconut milk challenge did not go well, I am not comfortable doing challenges with sesame and wheat if either has not gone away or dropped significantly. Barley and rye are being tested because TJ’s diet is very limited with his grain intake and we are always looking for ways to increase that. The components of dairy and peanuts will help to better understand the allergies and his likelihood of outgrowing them.
Since April, so much has changed. However, the biggest change is that I am not living in fear anymore. Instead of just trusting that God will answer our prayers, I have a new understanding of it all. I was trying to convince God that I would be okay if he changed our circumstances to the way we wanted them, the way we had imagined them. However, He was trying to show me that we would be more than just okay even if he didn’t. Now, I trust that He is leading us to where we need to be, protecting TJ, and all of us along the way. Therefore, while I am not sure what today’s blood work results will reveal, I am confident that we will be able to walk on, living for today, having faith in our tomorrows, and like TJ does so very well, smiling on because we have so much to be thankful for in the meantime…