The Ending Will Be A New Beginning - Blog Post #1
2017 Jan 6th
For my first blog post, I could write about my experience opening No Nuts About Us, from the idea to the Hawk’s Nest until now. I could write about my son and how we live daily with a severe peanut allergy. There are so many options. However, I have decided to choose a topic that has been at the forefront of our family for just over a year and the culmination of that experience comes to an end in just over a week. Of course, the ending will simply be a new beginning - with another two years of questions but hopefully an extremely positive outcome.
Exactly one year ago today, my son, Hunter, completed his first double blind food challenge, his last step to be enrolled in a phase 3 peanut patch trial referred to as PEPITES. He was just four years old at the time. He really didn’t quite understand what a food challenge was, although we did our best to explain it to him. He was just happy that he would be helping other kids like him.
The first day of the challenge was incredibly nerve-wracking since there was a 50% chance that today would be the peanut day. We were not sure what the expect and, as a planner, that stressed me out. However, after a few doses of the pudding-like grainy cherry flavoured substance, we knew it was placebo day. Based on his previous reactions, we knew that he would not have been able to eat that much peanut protein without any sort of reaction. This provided instant relief, at least for that day. We were also very fortunate that another allergist from Sick Kids was visiting that day and we were able to have a nice long chat about allergies, the possible causes, treatments, and the future.
Since we knew the next day would be hard on all of us, that evening we took Hunter to the CN tower. He was so excited about the escalators at the base of the tower, I think even more so than the view from the top! We went swimming in the hotel pool and watched a movie before bed. I don’t think we slept much that night.
I can honestly say that I barely tasted my latte that morning - I was so incredibly anxious knowing that my son would be eating peanut protein in less than one hour. My heart was racing and I was sweating, shaky and sick to my stomach, although I tried to appear normal for my son. If day one was nerve-wracking with only a 50% chance of peanut, then day two was literally sickening. The almost OCD way I ensure that our home is peanut free and our son never ingests anything that might have been in contact with a peanut was in direct opposition to the fact that my husband and I had given permission for him to eat peanut protein until he had a reaction.
The nurse at the allergist’s office was fantastic, she was patient and very observant. She also had three syringes drawn up with epinephrine all ready to go. My son was the only patient that day, which made it a bit easier, knowing that we had her undivided attention. The first dose was 1 mg of peanut protein - approximately 1/250th of a peanut. There was a waiting period after each dose was given and after the first dose, Hunter starting scratching his neck. However, in order to stop the challenge, a visible reaction needed to be seen. The second dose was 3 mg. He then started sneezing a bit and had a couple coughs. Although the nurse knew it was from the peanut protein, it was not substantial enough for the challenge protocol. The third dose was 10 mg. This caused an increase in the sneezing and coughing, more neck scratching, and an itchy tongue but nothing “visible”. These stages were very difficult for me to watch because I knew he was reacting from the very first dose, and had we been anywhere else and knew that he had ingested even a tiny amount of peanut, I would have administered his epi-pen.
The fourth dose was 30 mg, triple the previous dose. After this dose, he didn’t want to play his LeapPad any more, he was itchy and there was much more coughing and sneezing. The nurse is allowed to delay the next dose if she deems it necessary, which she did. She checked his blood pressure and oxygen levels. We are glad she delayed the next dose as his symptoms got worse quickly: his eyes were red and puffy, he had hives on his face and torso, his breathing was rapid and wheezy, his blood pressure was up, he said he felt sick to his stomach, and he was upset and obviously distressed - he was definitely experiencing anaphylaxis. At this point she called the doctor in. After a very brief assessment he was going to give an antihistamine, but after a second glance he asked for the epinephrine that the nurse had ready. Of course, this is when my son started to cry. He was sitting on my lap and luckily he couldn’t see my face because I had tears in my eyes. The doctor then ordered an adult dose of Reactine and Gravol. He also gave us a second dose of Reactine to take home. The epinephrine quickly resolved most of the symptoms. The decision to delay the next dose and the epinephrine was a blur - it all happened in a matter of minutes.
After we calmed him down, my son cuddled up with my husband in a recliner and eventually fell asleep. The nurse (and I) kept monitoring and she had us wait four hours before we could go home just to make sure he was ok. I watched him like a hawk the entire drive home, that night and the next day. His second reaction when he was three years old was bi-phasic and I was worried. Luckily, there were no further symptoms, except for the skin redness, which resolved by the next evening.
He has now been on the patch for one year and his final double blind food challenge is scheduled for January 16. Throughout the year he has had skin tests and blood tests and although they cannot share the results with us, it is hard not to notice that his skin test is slightly smaller than it was before. Combine that with the way his back looks and we really think that he lucked out and has the real peanut patch and not the placebo, although we won’t know for sure until after the next food challenge. Gearing up to those two days is extremely hard. We will knowingly be allowing him to eat peanut protein again, but with hopefully an increase in the amount he can tolerate.
The oral food challenge was the hardest part of the decision on whether or not to go through with the trial at all. We so badly want our son to be able to experience everything life has to offer, and reducing the severity of his peanut allergy will also reduce the anxiety and stress on our entire family. The protocol for the PEPITES study states that a treatment responder with an initial reactive dose of greater than 10 mg, like Hunter, will be able to eat a minimum of 1000 mg of peanut protein. How scary and yet exciting is that! If the treatment is effective, he will be able to eat the equivalent of 4 peanuts.
After this next food challenge, he is guaranteed two more years on the actual peanut patch. There is still no data on what is to be expected after those two years, but we will continue. The patch is now a part of our daily lives and if it increases his tolerance even a little, it’s worth it. Hunter isn’t defined by his peanut allergy - he isn’t that “peanut allergy kid” he is just our smart, funny, kind little boy who loves hockey and baseball and hot wheels, enjoys cooking, and knows the name of every herb and spice - oh, and he also happens to have a peanut allergy. To the outside world, such as his school and his friends, he may be the “kid with the peanut allergy" and we know that is, for the most part, to keep him safe, but wouldn’t it be great if that topic didn’t have to be the first one that needed to be brought up…maybe the patch will help us get there.
The patch isn’t a cure - his body will always think of peanut protein as the enemy, but this treatment will provide a chance to increase his tolerance level. Obviously, he will still never sit down and eat a peanut butter sandwich and he will always carry an epi-pen, but he may be able to lessen the risk of so many other things: he will be able to eat at a restaurant without worrying about cross contamination or even cheer on the Toronto Blue Jays, not from the nut-reduced section in the outfield, but from behind home plate.