1 year and 166 days
2400mg (maintenance dose)
We've made it through the first quarter and the first track outs. Everyone has stayed safe, we've built a rapport with the teacher, and been on one field trip.
I may fall over now. :) It's amazing the time, emails, effort, and prayers that went into those two simple little sentences. We've been through a lot. Getting the allergy plan in place was a lot of wrecked nerves, gentle pushes, and repeated conversations. We've been blessed with a teacher that gets it and emails us to ask about brought in snacks (unexpected). There've been some ups and downs. A parent said they were bringing in a birthday treat but would never respond what it was going to be. So... do you send a safe cupcake and hope they didn't bring fruit? We guessed right and sent a cupcake, but your kid is either just fine, or the envy of the class, or the only one without a sweet treat. I would prefer better than 1 in 3 odds of doing it right ;) I would prefer everyone stop bringing in food, but it was made clear to me they wouldn't restrict what came into the room by the nurse and the assistant principal. I am grateful to his wonderful teacher that tries to keep us all updated. I know there are three allergy kiddos in his class. One is us (tree nut), one is peanut, and I'm not sure on the other one yet. But we make absolutely sure never to send any peanut products at all. I know he's usually seated with the other two kids (that's how we figured out who they were).
Track out camps were a bit nerve wracking but we made it! Camp 1 we emailed with details about his first two reactions and said absolutely no food sharing at all, and no outside food that wasn't a piece of fruit. They agreed immediately and went into a crazy level of detail with forms that I had to fax to the allergist and medication agreements. I saw their schedule later (accidentally tucked into his papers that came home one day), and was AMAZED to see the # of kids that had allergies and what they were. But they had low ratios of kids to adults, he loved it, and they had clearly made sure every teacher for every segment of the day knew which kids had what allergies. And they did it quietly, gently. I may be in love with this camp. They teach them musical instruments, art, play outside, and all sorts of other fun stuff. Can I get to go here? It was nice to find a place we can trust on the first try! (We knew other allergy parents that had gone there and were very happy so we had some inside info).
Week two we took a vacation to the house of mouse (Disney) and had some great food experiences and some not so great. Never anything that put us at risk, but Disney is famous for accommodating allergies and at least twice I didn't feel that was really the case. But for a whole week of eating out that's pretty amazing. :) We will email the special diets program and let them know about the good and the bad, but we had a blast. We had our first ice cream parlor experience (that went over quite well!), and another time got frozen apple juice and safe cinnamon buns. Lots of research and stalking of boards on facebook (Disney Chefs Rock Food Allergies is the primary one I used). Tons of good info and nuggets that only matter to the food allergy community, but that can really make the trip a lot more fun and inclusive.
Week three both kiddos were at a sports camp - their policies were so ... laid back it was stunning compared to camp 1. We talked to the coaches at length and they had all been trained on epinephrine and apparently deal with this pretty regularly. I did figure out after day one they thought he was also allergic to peanuts and he more or less ate lunch by himself. I asked them not to do that, but asked that he sit with his sister with other kids. I don't know if he chose that on day one or if they did. He didn't seem to be upset about it so we didn't make a big deal about it, but I did tell them to be careful not to exclude him. That word seemed to make it click. He loved it and was totally worn out at the end of each day. He got a stomach bug the end of the week which wasn't so fun. I'll be careful with these guys but they clearly train their coaches, so it was good. Active stuff is great :)
Stomach bug was not so fun. Poor little man is a trooper though. I finally had to him in to get something for the nausea so we didn't mess up our OIT. They took one look at mr totally limp and pathetic (he didn't MOVE for the whole appointment) and gave him chewable zofran tablets. As soon as we got his stomach to stop heaving he recovered quickly and was able to keep down his doses. By day 2 he was asking for guacamole, so I figured he was improving fast. We avoided dairy for a few days and all was well.
Halloween went off well - we dumped (we thought!) all the unsafe candy before they came in and sent it back out. We also participated in the Teal Pumpkin Project and had toys and non-food items in a separate bowl available. The kids liked painting the pumpkin teal and REALLY liked picking out items for that bowl at the store. One scare was the morning after Halloween, the kids were up before we were and discussed eating candy without us and decided that was a bad idea. I praised them later for that, especially when I realized the candy they wanted to eat was from a goody bag (and hadn't been screened yet!) I said several prayers when I read the labels and found TWO items that would have appeared safe (smartie type monster shaped candies) that said processed on a line with walnuts. When I got my heart rate back under control, we had a long talk about why they did the right thing, and showed them the label, then promptly trashed the candy. Hooray for them doing the smart choice!
Aside from the OIT (which he doesn't really understand yet), his world revolves around play, sight words, getting green behavior bumblebees at school, trading in said bees for prizes, and beginning math. I swear we were learning colors in K? But he's making it. Couldn't be more proud of this tough little fellow. Honestly I might be even more proud of his big sister for understanding far better than he does the risks that he faces. She's a bit of a nervous nellie, but she loves him fiercely and watches out for him. When she's not busy torturing him or telling him how to do everything of course!
Thanks to all the friends, neighbors, family, and allergy peeps that have cheered and prayed for us on this road. It's long and slow and fraught with nerves, but it's been great to be loved along the way. Onward! Maybe one day we'll get into that clinical trial and speed up this process. I can dream anyway.
Free book! - Nov 6 and 7 - free kindle kids book about food allergies.
Fierce Monster and Max from "Where the Wild Things Are"