Mom, I'm tired

Before we decided to start OIT, I was scouring the Internet for possible symptoms and side effects.  Yes, I know I shouldn't make decisions based solely on what I read on the Internet 😲, and I don't 😉, but I wanted to know what we were potentially in for.

Upset stomach, vomiting, hives, itchy throats . . . . . okay, I was ready for those.  For the most part, those haven't been a big issue for us, but what HAS been an issue for us is fatigue.  I'm talking 'wanting to fall on the floor, sleep all day, peel me off the couch' fatigue for our sweet Brandon.  Fatigue that is completely uncharacteristic for him.  I was not expecting this side effect, as I hadn't really read much about that happening, but WOW, has it hit him like a ton of bricks!  

At our successful updose visit back to our nemesis 4.0 mL of Solution C, our doctor put Brandon on a full adult dose of Allegra.  Allegra has been our allergy medicine of choice for the kids for quite some time now, for various reasons.  I'm one who tends to 'underdose' on medicines - for both me and the kids - just because I don't want to overdo it.  So at home, when seasonal or environmental allergies flared any time, I gave 1-2tsp of Allegra, which is 60 mg.  His doctor gave him a full adult dose, which is 180mg, so 3x's what he had been getting.  That's not a bad thing in and of itself, because he's big enough weight-wise to handle that.  But holy smokes, it knocked him on his keester!!  🤣  Allegra is a non-drowsy medicine (compared to something like Benadryl), but for whatever reason, it just knocked Brandon down.  It helped mitigate any symptoms he was having from his dose, so for that reason I am thankful, but all of a sudden we had this extreme fatigue to deal with.

When he would dose at the 4.0 mL level, that first hour after dosing was spent doing pretty much nothing.  And by design, you have to do that (we have a 2 hour 'rest period' after each dose, to allow the body to fight off the allergen), but this was more marked than just needing to sit still.  For the first time since he was a toddler, Brandon was willingly asking to take naps.  Granted, they were cat naps 😸, but this was just soooo out of character for him that I didn't quite know what to make of it. 😕

We got permission from his doctor to cut the Allegra dose in half from 180mg down to 90mg.  Even at that level, he was still suuuuper tired.  We went on a cruise soon after his successful updose back to 4.0 mL of solution C.  He was at the 90mg of Allegra at that point, but even then, his body physically needed to stop and do nothing for that whole 2 hour rest period.  He even snuck in a few afternoon naps on the cruise, versus being out on the water slides like little brother was.  We never faulted him for wanting to nap, but gosh, we wished he wasn't SO fatigued, for his own sake.  Especially on vacation. 😎  But the thing we're learning about OIT is that you HAVE to listen to their bodies.  Think about how you'd feel if your body was constantly fighting against something you purposely introduced into it.  Every day.  We're working his immune system on 'double time' with this process, and it was finally catching up to him.

When we got back from the cruise, we had an updose appointment the day after we got home, and his doctor actually down dosed him back to 3.5 mL of solution C.  It was a bit of a deflation for us, but it wasn't unexpected.  With OIT, if you push too hard, too fast, you're not going to go forward.  You're just going to slide backwards.  So we willingly - but at the same time reluctantly - moved back a bit on his dosing.  She wanted a full two weeks of no reactions to a dose.  We also weaned him off of the Allegra with his doses.  The combination of those two things - downdose + no Allegra - allowed his body to 'catch up' a bit and get back on track.  Thankfully, we successfully updosed back to 4.0 a few weeks later, with no Allegra, and he did great.  🙌  

Just to put things in a bit of perspective as to why we are embracing turtles as our 'mascot' for this process . . . .  we first tried 4.0 mL of Solution C back on Jun 14th.  He had to have epinephrine then to stop a throat-closing reaction, and through a series of downdoses and updoses and downdoses and updoses, we finally 'graduated' that dose for good on September 12th.  Three months yall.  Three. Months.  Three months for his body to accept one dose in this process.  That was dose 8, and graduation is dose 30.  I feel like the Snickers commercial . . . . not going anywhere for awhile?  🤣  And ironically, he can't even HAVE Snickers!  🤣  His doctor officially/unofficially labeled us as 'slow track OIT' at one of his downdose appointments.  And you know what?  That's totally fine  😀  Slow and steady wins this race, and if this is going to be our schedule, then by gosh, that's what we'll do.  

Moral of the story - expect the unexpected with OIT, because you never know where it's going to take you.  And don't be in a rush - fighting against your child's body's natural ability to move forward will only frustrate you AND your child.  If you can go quick, great!  If you can't, that's okay too!  Embrace where you are and take it day by day, keeping that end goal in sight.  🥜

Until next time, 

Momma Knows Best 💚🐢