It's Sunday, January 28 and although the third food challenge for my son's peanut patch trial was last week, I've been struggling with how to express my thoughts on how that day went. I'm having trouble thinking about it and it's tough to put into words. Even my husband has asked me over the past few days why I am so quiet. It took me three days to even tell my mom what happened that day. I told a friend as well but both of them got enough info to create an overview of the day and nothing more. I haven't reached out to any of my close friends or family, whereas the last challenges were posted on social media that same day. I'm not sure I can finish this blog post today either, I'm tearing up as I type.
This post may end up slightly mixed up but honestly, my main purpose for writing is to get the experience out. It's now Thursday, February 1 and I'm ready to continue. I'll start with the facts of the food challenge and go from there.
None of us slept much the night before and our 3:45 wake up call didn’t help. We were all anxious and maybe a tad excited to see what the results would be. We arrived just before 8:00 on Tuesday, January 23 to begin the appointment, which involved blood testing, skin testing, breathing tests, vitals, etc. so by the time Hunter ate his first dose, it was around 9:00. After dose 3, which was the 10mg dose (14mg cumulative), Hunter said that his tummy hurt. This is unusual for two reasons: one - he's never mentioned a tummy ache during any of his previous anaphylactic reactions; two - although he ate some breakfast, perhaps he was hungry or nervous and that was causing the tummy ache. After the next dose, which was 100mg, the tummy ache was worse but there were still no other symptoms. At this point, we all guessed it was peanut day.
Side note: a double blind food challenge is the gold standard of food challenges. Double blind means that no one, including the patient, allergist and researcher, knows whether that day is peanut or placebo. The one person that knows is the person that mixes the food, and she wasn't sharing. It can actually skew the results if anyone knows. Please also keep in mind that Hunter was constantly monitored. Vitals were taken regularly and breathing checked by both the researcher and the allergist. They also follow up the day after to ensure everything is okay and we can always reach the allergist 24/7.
After the 300mg dose, the tummy ache was worse but there were still no observable symptoms. At this stage, he had ingested a cumulative dose of 444mg. There were only 3 doses left, one dose of 1000mg and two doses of 2000mg. Dose 6 (1444mg cumulative) was given and within 2 minutes, the symptoms began coming on quickly. It started with a runny nose, sneezing, coughing, and skin redness. The allergist was called immediately. Hunter's breathing became laboured and the allergist gave epi. After the epi, his breathing became much better but the hives began. Only a few at first, but then all over his body and he was itching like crazy. The allergist gave 20mg of Reactine but it wasn't helping the hives and itching quickly enough and Hunter was very uncomfortable. The allergist hates Benadryl, but in this case he gave 25mg to calm the hives and make Hunter more comfortable. It helped - a lot. This all happened in a matter of minutes.
He fell asleep for a bit due to the Benadryl but at least he was feeling better. When he woke up, I noticed all of his fingers on one hand were white. When I looked closer, I saw that his fingernails were blue on that hand and I felt he had a blueish tinge to his lips. I quickly alerted the nurse, researcher, allergist, and my husband but no one saw the blue right away (the white fingers were hard to miss). I knew that something was wrong so I took off his socks. His toes were whiteish blue and his other hand was turning as well. His face was noticeably more blueish purple and at this point I remember saying "does anyone else not see that he is blue” (I believe I repeated that more than once). My husband also saw it at this point. The medical staff checked his oxygen levels, which were fine. They said that due to his skin being so red and inflamed, the blood was being drawn to those areas. Cooling packs were provided to cool the redness and 25mg of prednisone was given. The allergist assured us that he was okay. He cuddled up in a recliner with my husband but after a minute or two, he leaned over and threw up several times. I wondered if this was a secondary reaction but it was because he had a lot of water to drink and his body was getting rid of everything. There was a lot of vomiting but immediately afterwards, Hunter felt better. His demeanour completely changed and he was wanting to talk and play games again. Again (after his brief nap) this all happened within minutes. He was given more prednisone to take at dinner time as he was still considerably reddish purple. Now, I know many of you are thinking, maybe more epi was needed? We thought the same thing and my husband and I both asked about it. However, I know the allergist does not shy away from more epi, last year Hunter had two doses. I trusted the allergist and he didn’t think more epi was warranted.
After his symptoms began to resolve, he was monitored for several hours. I was relieved and could try and digest everything that happened. I was so overwhelmed that I went outside to cry for a few minutes. Although I appeared to be calm for Hunter, I was freaking out and the few minutes that the reactions occurred felt like an eternity. However, when he was turning blue, I turned a corner. I'm sure I didn't sound calm when I was asking why no one else saw that he was turning blue. Although this was after the epi and the main part of the reaction, this was the scariest part for me. Seeing your child turn blue is scary, especially in the situation he was in. The vomiting also threw me. I had seen all of the previous symptoms before: hives, coughing, sneezing, laboured breathing, and redness. I had never seen him turn blue, white and purple and throw up so many times during a reaction.
There are pros and cons to this challenge as I see it.
- He was turning blue - BLUE. That is the scariest colour I have ever seen my child. Blue lips from being outside in the cold are not the same. This is by far scarier than the red tomato hives, scarier than the bright red blood when he needed stitches, just downright frightening.
- The doses are given 20 minutes apart. Had dose 6 been held and more time elapsed, would he have reacted to the 444mg?
- We’ve been so ingrained to epi on known ingestion. I’ve heard the true stories of the fatal consequences of delayed epi. Let’s say we get to a point where there is a certain tolerance level and he needs to eat so many peanuts per day, it scares the crap out of me that we wouldn’t epi.
- He can tolerate approximately 1.5 peanuts, but not 4.5 peanuts. That’s much higher than the 1/50th of a peanut he reacted to last year and needed 2 doses of epi. However, this is not “real world”, these are measurements of peanut protein. Once the trial is over, he will still need to pass a food challenge with real peanuts to see what his actual tolerance level is. We are not at the point where he can begin eating “may contain” or “manufactured in a facility with” , which we wouldn’t do anyway; however, we were informed that it’s still recommended that we avoid those until he completes an actual food challenge and can tolerate at least 2 peanuts. This would be a huge change for our family.
- My son is braver and more knowledgeable. This study has made him much more brave because when he first started, the epi made him cry and rightfully so. He also knows what he feels like when he eats peanut and when he’s reacting. Although each reaction he’s had has been different, now he knows almost all of the symptoms associated with anaphylaxis and how they feel. He knows epi makes him better and is not scared of it, nor does it make him cry. He’s ok with blood work, although he still doesn’t enjoy it, he can tolerate it.
We visited this past Tuesday for day two of the food challenge. We knew it was placebo day so we were much more relaxed. All he had to do was eat all the cherry flavoured pudding like food and he did it like a champ, no problem at all.
My husband thinks this was a good challenge; obviously he doesn't want to see our son react, but overall he is happy about the results of the challenge and what this means for our family. I haven't gotten there yet. I think it was a good day and yet a very bad day. Yes, it’s fantastic that Hunter can tolerate more peanut after one year on the patch, but I am also thinking of the implications of this for the future. I think I need more time to process it, although I do hold out hope that two more years on the patch could be life changing.
If you’d like to read more about our peanut patch journey, check out this link, and this one and finally this one, to find out how this journey has progressed.