Things have been going extremely well this summer with everything. TJ and I have our own routine and are having a blast. I have been working through many of my food fears and even introducing new foods to his diet such as raspberries, strawberries, chick peas, and spinach. This may not seem like anything at all; however, with a child with multiple food allergies, any new food that is introduced with no reaction is an amazing feeling, an amazing step. I prayed a lot leading up to the summer months and continue to do so that I would trust in God to guide me because if I didn’t I would be sitting in the house all the time sheltering him and myself from everything. On a positive note, his skin has been pretty good despite some problem areas and minor flare ups. Every new food or new activity I feel myself become stronger and the bond between TJ and I also growing. It sounds quite dramatic but to be honest, it is quite liberating. Each new food or new activity that we try is a step closer to normalcy (if there is such a thing). I don’t talk about these feelings often because I know that it just labels me as even more of that “crazy allergy mom.” Don’t get me wrong, I speak up and protect TJ from his allergies in all situations and am told by my husband at times that I am too cautious. I know and am 100% fine with this protector/advocate role that I play as his mom. In a way, all moms are like this. However, I would be lying to everyone including myself if I said that the thought that others who do not know this world of food allergies/eczema are definitely judging me for this same detrimental role, I would be lying. However, the past few weeks have been ones full of baby steps forward. While I was still only comfortable with baby steps, they were getting slightly larger since really everything seemed to be working in our favor. Or at least that is how I felt before today’s challenge.
Today’s food challenge was for coconut milk. According to blood work numbers, this was and is his lowest allergy. With a 0.6, I was never told to eliminate this from my diet during the six months of the elimination diet. Our doctor, allergists, and nutritionist all agreed, this was probably not a true allergy. Since you had passed soy at a 2.6 and peas at a 0.6 a month ago and doing very well with both of them, I was not as worried as I had been in the past. Plus, all of the forward steps, we had taken together since summer vacation started were also building up my confidence.
There was only one part of me that still worried about this challenge and it was solely based on the fact that we had cancelled it back in March when TJ was ten months old. It had been suggested that we do this challenge so that he could drink coconut milk when he turned one. However, the morning of the challenge, TJ woke up puking with the stomach bug. This had never happened before so I took it as a sign back then that his body wasn’t ready for any food challenges and that we would wait until his allergies were retested around his first birthday to come up with a plan. Since TJ was allergic to all types of milk when tested at 7.5-8 months including cow’s, oat, almond, soy, goat, this was a tricky next plan. Today, it confirmed that this was indeed God’s way of warning me not to put TJ in the food challenge back in early March. However, now he seemed to be doing much better so I talked myself out of that slight doubt in the back of my head.
We arrived at the challenge and our allergist, Allergist #1, informed us that recently he had two unexpected challenges. A child challenged beef which was a level 3 allergy and passed while another child challenge cow’s milk which was a level 1, low allergy and failed. I hate that wording “failed.” Let me restate that, his body just wasn’t ready yet.
(That little voice of doubt in my head was becoming a bit more vocal…)
Coconut Milk Challenge:
9 am – We gave TJ about an ounce of coconut milk in his sippy cup. He licked his lips a little bit and our allergist asked if he usually does that. “No he does not.” – However, TJ was is usual happy self running around, smiling, playing so our allergist left for ten minutes. I didn’t have a good feeling; however, I never had a good feeling during any of these.
9:10 am – Our allergist comes back and inspects TJ’s body, throat and mouth. We are instructed that we can give him more coconut milk. He drinks 1-2 more ounces and he leaves us again. About a minute later as TJ ran around, he spit up the milk. I went to go get the allergist and we stopped the challenge. TJ received Benadryl just in case he had more of a reaction. His body just wasn’t ready yet.
Two weeks before the challenge we had emailed out pediatrician asking if we should do the coconut milk challenge at all since we really didn’t plan to give it as the milk. He was doing so well with soy and we didn’t feel the need to switch it up. However, she informed us that we should always go with the food challenges if suggested by our allergist because it is good to cross more and more of these allergens off of our long list. We trust her and went through with it. However, he did not have the outcome we prayed for. His body just isn’t ready yet…
As much as I continue to tell myself this and that I am okay, I do feel myself taking several steps back. My fear is a bit greater again and I feel like there is no one to tell this to. Therefore, I pray that God guides my steps and us on this journey. I put all of my trust in you God.
While my smile has been overshadowed by fear again, I still am so much better and stronger than this past winter. Of course, I have to find it in me to smile since TJ just continues to keep on smiling and smiling even without coconut…