Oh Nuts.
For the last 13 months Carter has been part of a tree nut trial. He has been a champion! Carter was the perfect candidate of the tree nut trial because as of right now, he is not allergic to any other nut other than the peanut. Basically, the peanut molecule is bigger than all the tree nut molecules so his body is rejecting it but if we can trick his body into thinking that a peanut is actually just another "tree nut" than it's possible his allergy wouldn't be as severe and deadly and perhaps even go away completely. In November 2016 Carter was testing for IgE AB PEANUT and Immunoglobulin E (IgE - basically his body has created chemicals and antibodies to fight off the "invaders") through blood work. Previous to that blood test he was tested back in 2012 and his numbers in 2012 were 10.4 (the lower the better). On August 25, 2016 when he was tested again his levels dropped to a whopping 4.8 points (still with a severe anaphylactic protein so really it only looks better on paper but the results in a real life scenario wouldn't be any different).
The trail consisted of Carter consuming one of every single tree nut once a day for one year. This was hard for him and tedious for us! Because you cannot buy all the tree nuts without the packaging saying "may contain peanuts" and because we cannot risk the possible cross contamination we were told by our specialist that we would have to wash all the nuts separately in dish soap to rid them of any peanut oil that may (or may not be!) on them. After washing them and rinsing them we would let the dry out and then we sort them into baggies and every two weeks fill up his little pill case with one of every nut inside it. We did this for a year.
On January 3rd 2018 Carter was tested again for his IgE AB PEANUT and Immunoglobulin E.
Today was our follow up to get the results and re-testing of his peanut allergy. I had such high hopes that Carter would be freed from his peanut allergy. We were so excited this morning and nervous too.
The nurse came in and was super kind. She reassured Carter that the test is just annoying but doesn't really hurt. She tested him for all pollens, animals and then peanuts too. I saw a hive right away on his arm but tried to relax and hold onto the hope that maybe peanuts will just be a regular allergy and not one that could kill him anymore. Carter was so brave! As annoying as the test was for him and itchy, he didn't move and held out the 15 minutes!
When she came back in to check out his arm I noticed 3 large hives. One of which was the peanut so I knew we weren't out of the woods completely BUT we still had hope! 2 Minutes later Dr. Cheuk came in and immediately handed me an updated Epi-pen prescription. I knew in that moment it was still anaphylactic for Carter. My heart sank. I knew he would feel so disappointed. I had a great chat with Dr. Cheuk and he made mention that through this entire year trial, Carter's points had only dropped 0.3 which is basically noting. That his anaphylactic reaction would still be just as bad and even the worse case scenario is still on the table if he ingests even a small trace of a peanut.
The other hives that showed up on his arm was 1. Histamine. "With histamine intolerance, symptoms can be triggered by certain foods (his peanut allergy most likely triggered this hive), but the mechanism is different than a food allergy. Some of the symptoms mimic a true allergic reaction, but HIT is not mediated by IgE, so blood allergy tests will be negative".
The second one that showed up for Carter was "Snow Mould". This one is new to Carter's allergy list. Basically its a bacteria that presents itself in wet soggy areas. So with so much snow the grass is creating a bacteria that Carter is apparently allergic to. If he isn't careful it can cause a chronic allergy and asthma. Minor symptoms are much like Hay fever and we can expect it when the snow starts to melt. Time to move to Arizona!
Because the tree nut trial didn't go as we had all hoped, we now have a new goal to work towards. So not all hope is lost but maybe a lifetime allergy is more real at this point. For the next 6 months, Carter is still to have all 9 tree nuts every single day along with a probiotic of some kind and we are now asked to go egg free. He said that if Carter has an egg intolerance (not an allergy to eggs but an intolerance), it will affect the results of his peanut testing. Somehow they're closely related.. same with "Hard wheat" but we can only cut out one at a time for a 6 month period to get true results if its making a difference or not which means in August when he is re-tested if eggs made no difference in his IgE levels, then we will cut out hard wheat completely and he will only be aloud to have soft wheat for another 6 months when he will be tested again but for now, we only focus on having no eggs in anything he consumes as much as possible. The odd slip up will not hinder the results as long as i can say for sure that 90% of the time, he is not consuming eggs in any way.
I know an allergy is the least of so many parents worries but for us, it's THAT severe. Its scary and you have to trust so many people with your kid and hope and pray that nothing happens. So many people think of an allergy as hives and itchy skin for an hour or that an antihistamine will take the discomfort away but for Carter, it could literally take his life. I wanted so badly to feel the freedom that we have with Bentley and Penny. I wanted Carter to be able to eat the Valentines Candy that came in wrappers with no ingredients attached to it instead of tossing them in the garbage and saying sorry because it was too risky to try. I wanted him to be able to eat things that "may contain peanuts" without panicking about it. Unfortunately, for now, thats not in this chapter.
The moment we left their office, Carter burst into tears and so did I. We hugged it out for a long time in the freezing cold air and talked about how we are a team. I will always protect him. There is comfort in numbers and he has a great team supporting him with awesome (AWESOME!) doctors. My heart aches that he was disappointed but we will move forward and not give up hope. Heres to the next 6 month trial with my little buddy.