Sunday, January 5, 2014

The Beginning of OIT

Hello 2014 and a new resolution to actually keep this blog more updated1! I can't promise weekly updates, although I will sure try. I know there are people who use my blog as a primary way to follow Big Monkey's journey and I'm slacked and left them hanging. Sorry all! I will again try to make this a priority.
Christmas Pajamas
The last three weeks has felt more like four with everything we've had going, but now that we're at January 5th, I think I can see that 2014 is going to bring some amazingly wonderful things to our life. The last 3 weeks have included a trip to the allergist to start OIT, an unexpected extended stay near the allergist due to a complicated start, Baby Monkey turning 3, Christmas, a new year, and Big Monkey turning 5!

Baby Monkey's 3rd Birthday
December 13, 2013 was the first day of a major journey for Big Monkey. That day he officially began peanut desensitization therapy (I'll call OIT) with the amazing allergist we found last spring. We've been treating other allergies and working toward this day since May, but even so, I still cannot believe that we started. I had of course hoped for a smooth and uneventful beginning, but OIT has proven to be a whirlwind of a process already.

OIT Day 1: In Good Spirits (what little boy with unlimited access to an iPad for the day wouldn't be in good spirits??)
At the office with Dr. R, Big Monkey did fantastic. He showed no fear, listened well, answered our repeated questions about how he was feeling, and showed Dr. R his real personality. Thankfully, Dr. R liked the fact that Big Monkey had to put his own little twist on everything (i.e. there was no way we could get him to say "E" without some theatric or another). We made it to the 5th of 6 peanut doses that day before Big Monkey said his tummy hurt (just moments before the 6th dose was to be given). He quickly progressed downhill to looking very green, so we opted to stop. Dr. R gave Big Monkey a dose of benadryl to help, had us walk the halls, and then eventually sent us on our way with instructions to feed Big Monkey a daily dose of peanut flour well below the 5th dose that caused the stomach ache. All was well until the benadryl wore off. That's when the hives appeared everywhere. Big Monkey even had them on the back of his ears. We were given instructions to follow a 24 hour course of medications to combat the reaction. We figured this was all a reaction to the 5th dose in the office, which we already knew was too high.

I weigh out every dose and place it a cookie or muffin for Big Monkey to eat every day
Unfortunately, Big Monkey reacted similarly to the lower dose that we gave at home. Hives and a 24 hour period of medications again as well as instructions to lower the dose even more. We went through about a week trying to find the right dose for Big Monkey. You're right if you think it's a little strange that it took so long. We should have went home on the right dose, right? That is supposed to be the plan. What we didn't know is that Big Monkey displays some very delayed reactions. The reactions to the doses we gave at home came anywhere from 3 to 5.5 hours post dose! Typically a patient will react within 20 minutes and maybe as long as an hour or so later. So it took a little longer to figure out how much Big Monkey could tolerate. Thankfully, we are armed with a very extensive, aggressive, and reliable anaphylaxis plan.

Part of our anaphylaxis plan includes activated charcoal. It tastes like thick black, chalk, but Big Monkey thinks it's funny that it makes his mouth look like something out of a horror movie
Christmas Day brought our first hive free day (we had several days on our current dose where Big Monkey was experiencing 5 or less tiny hives that were not enough to make us back down the dose any more). We have been hive free since, although not without incident. We've seen everything from strange red rashes on his forearm, bright red ears, vomiting, and complaints of "needles in his ears." Most of these are due to external factors such as getting over heated, not eating enough before his dose, and his dose aggravating his other allergies. Regardless, every symptoms brings a new wave of stress and panic.

Adorable brotherly love (too bad they aren't always like this)
As a mom, I have never felt so excited and so scared at the same time. My eldest baby who has been severely peanut allergic since before he was 1 year old, is now eating the equivalent of 1/8th of a peanut every day. Yes, this is a tiny amount compared to someone who is not allergic, but it is a start! It brings us hope. This week Dr. R will discuss when and how much we will updose. At this point, I'm just hoping the days following the new dose are less eventful than our first week in this process.

Big Monkey and his mommy made custom cake

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