|From our last trip in April|
This trip, we boarded with our boarding group and I did not wipe anything down. The boys still sit in their car seats when they fly, so touching stuff is still minimal, but I no longer have to worry. They served peanuts. We didn't ask for an announcement. In fact, I didn't even notify the airline of his allergy. We were just passengers on a plane and nothing more.
At Disneyworld we ate anywhere we wanted. I must say, Disney is and always has been fantastic with food allergies. I still had to notify restaurants of my shellfish allergies so that I could identify what I could and couldn't eat, and the allergy menus are so detailed and all allergy dishes come marked and are cooked separate. They have separate prep boards, bowls, etc. There were a few places that we notified them of his peanut allergy more because we needed to make sure we knew WHAT he was putting in his mouth, not so much that he couldn't eat it. I just try to keep track of his consumption, especially in a new place on a different schedule when I might need to be watching for his body to react unusually. He ate what he wanted, when he wanted, and where he wanted though. It was fun and delicious. Yes, I went to Disneyworld to eat food, lol.
|Kylo Ren at Hollywood Studios - Little Monkey was not 100% sure|
|Seriously, Big Monkey loved the culture and garden festival at Epcot (history geek)|
Peanut has been going well. Overall, we have gained a lot of freedom. It hasn't been a 100% smooth ride. In fact, we have seen a few reactions that have been our scariest to date. They still pale in comparison to what some allergic individuals experience, but still a reality check that we really needed OIT. Since graduating, Big Monkey has had a handful of mild hive reactions. Most have been about 3 hours after consumption, with one or two happening immediately. All easily resolved with some antihistamines. Two reactions in particular scared the pants off me (well, the first one did. I was more familiar with it the second time it happened).
Friday, March 7 was like any other ordinary day. Daddy Monkey went to work and the boys and I started on our day with breakfast. Friday was 60 peanut day, so Big Monkey ate breakfast and then had his peanuts. This particular day he had half his 60 dose in the form of peanut butter on toast and the other half as peanuts. He ate his peanut butter on toast. I looked at his face to find some tiny hives around his mouth. I thought, crud. He's only half done. I'd seen these little tiny hives with peanut butter before. Sort of like it sticking to his skin irritated his skin. So he stopped eating and I wiped his face and hands with a wet cloth. By the time I put the cloth back down at the sink and came back, his hives were almost gone. My mommy gut was sort of screaming at me to not have him eat the other half of his dose, but my brain said he's done it before and the hives are gone so just get it over with. Yeah, big mistake on my part. I will now always listen to the mommy gut. He ate the other half and was fine.
Until 1.5 hours later. Big Monkey comes in from the other room where he was playing Legos and he says he has a funny whistle and something is wrong with his voice. His whistle was a slight wheeze and his voice was cracking. It sounded like one might sound when they have a cold and have phlegm stuck in the throat preventing him from speaking clearly. Then he coughed and it sounded wet with a rattle. Again, like a child might sound when sick. I could see the worry in his eyes. He knew something wasn't right. I told him I needed to give him his medications and he agreed (he never agrees to those meds so easily because they taste terrible). I knew he didn't feel right then. So he had 2 antihistamines and an oral steroid. The epi pens stayed in hand and I reached out to my friends that are also fellow patients. They waited with me as I waited to see if I would need to epi Big Monkey for the first time. I wouldn't have hesitated to use the epi if breathing was involved, if another symptom appeared, or if the meds hadn't started working almost immediately. For most people without the extensive action plan we have, I would say this would be a case to use the epi pen immediately. We sat in front of the TV for the next 2 hours while I waited and watched. He was fine.
We have no idea what triggered this reaction. He had eaten his 60 the week before. He had eaten peanuts almost every day that week (not a lot, but a good amount). He was not getting sick. He didn't appear to be tired (but then again, this is the kid with insomnia so I can never be sure he's not tired). Dr. R instructed us to make sure he was getting at LEAST 8 peanuts each day and to try to eat way more than that most days. So we did our best to increase the amount daily and make sure that we didn't skip doses. The next weeks went fine. In fact, everything went fine until after our trip.
I will admit, traveling to another time zone and running around theme parks for 5 days in the Florida heat made dosing a little difficult. Since Disney is so good with food allergies, I noticed that peanuts were not exactly everywhere, especially not in forms that Big Monkey would actually eat. I took peanuts for him to eat every day, but mornings were so hectic getting up, getting breakfast, and getting out the door that I often forgot. Hey, I even left my purse in the room 3 different times and had to go back for it (it had the med kit in it, so no, I couldn't just go without). Then I'd remember, but we didn't get back to the room until late and Big Monkey was exhausted. We know how not well he does with peanuts when exhausted, so no way was I going to give him peanuts right before bed exhausted and potentially ruin our vacation.
So I knew when we got home that we were a little low on our consumption. I spent the next few days trying to ramp his consumption back up to larger and larger quantities, not doing this on the day my mom had to watch him alone while I was gone. He did fine with all those doses. So on Sunday I gave him his 60 (actually a few shy of 60, but close). He ate them with a pout. He was fine until 3 hours later. He had gone out into the man cave with Daddy Monkey. He was calm, but he was out vacuuming up the man cave/shop. This was probably not a good activity post 60 after a busy week. I have a feeling it led to allergy overload on top of Big Monkey still being slightly off in his sleep. He came in with 5-6 hives over various parts of his body. These were not tiny, but also not huge. About the size of a smaller mosquito bite. That's bigger than his normal hives, but not in epi-pen territory yet. I gave benadryl and sent him for a shower to get the dust bunnies off. When he got out of the shower, the wheeze and wet cough had set in. The hives were still there. I added the second antihistamine and the oral steroid and we waited. Things improved quickly, but poor Big Monkey was all drugged up and sort of out of it for the day (and the next day too really).
New instructions were to make sure that we are really pushing his body between the doses of 60. We need some major variability in amounts. So we will now do small amounts and large amounts. Basically, we will sort of be adding additional exposures to 60 peanuts. This is not the same result for everyone. Remember that Big Monkey still has a long way to go to be "normal." His IgE is still very high and it's going to just take time and exposure to bring that down. The lower it gets, the less sensitive he will get and the more variability and flexibility we will get. It's sort of like we are still going through OIT and teaching his body to calm down even though we are not increasing his doses anymore.
Reactions and all, it is still worth everything we have done. He pretty much never reacts to smaller doses or cross contamination. He can eat a peanut butter granola bar with no issue. He can be around other people eating peanut butter and jelly sandwiches. He could accidentally pick up his friend's peanut butter and jelly sandwich and eat the entire things instead of his almond butter sandwich (a scenario that is 99.999% not likely to happen since Big Monkey hates sandwiches, but still) and be fine. Sixty peanuts is approximately 3 tablespoons of peanut butter. That is a LOT of pb to fit onto a sandwich. Like make me gag when I try to eat it amounts, in my opinion. So we are still very safe post OIT. One day maybe his IgE will hit zero and then he won't have to worry so much about how many peanuts he eats and when. Some of Dr. R's patients (those that have been with Dr. R for a very long time and have IgE of zero) only dose once a month with normal consumption in between. So there is still progress to be made. Until then, we are still thrilled with our decision and the freedom we have gained.
Until next time!
|Animal Kingdom - Mt Everest|