Turtles, Ear Tubes, and Small (yet big!) Victories

Hello friends~

I wanted to hop on and let y'all know how OIT has been going for us since my last update, the one that included our epinephrine updose visit.   (If you want to read about that office visit, click here.) I'm happy to report that we have NOT had to use that again - either at home or during an office visit.  🙌

After that visit that I'm referring to, we've slowed things down . . . . . considerably.  That day, we tried to jump from 2.0 mL of Brandon's current strength solution (a cherry flavored liquid with a minuscule amount of peanut flour in it) to 4.0 mL.  After he reacted to that dose, our doctor stepped him back down quite a bit.  We tried 2.5 mL at home for 3 days after that, thankfully with no reactions.  On the 4th day post-reaction, we upped to 3.0 mL per dose, also with no reaction.  Wshew!

During our next updose visit, Brandon had some lingering chest congestion, left over from what I can best pinpoint to a fun but long day at our local waterpark that riled up his sinuses, which eventually traveled to his chest.  No fever, no other symptoms, other than chest congestion.  Brandon's allergist didn't like how his lungs sounded when we got in office that day so she scooted us out another week before we attempted another updose.  When introducing an 'enemy' into his body every single day (i.e. his OIT dose), his immune system needs all it can muster to process that dose.  When his body is busy fighting off other things (in this case, chest congestion), it can't use all of its available resources to do what we're training it to do (accept peanuts as 'okay.') 

I am very thankful for his doctor's caution with proceeding.  Brandon and I are both hopeful to be able to move through this process swiftly but safely, but we have quickly learned that that's not in the plans for us right now.  And that's okay.  That's where the first word in my title - Turtles 🐢 - comes in.  In sharing our setbacks and slow progress with some friends, one sweet friend suggested that we make a turtle Brandon's 'mascot' for this whole process.  Slow and steady wins this race.  Being a 'hare' 🐇 in this process is not our place.  And so we accept that role and administer his doses, day by day, knowing consistency and safety beats out swiftness and early burn out.

Just to put it in perspective . . . . . our doctor's protocol calls for a series of 30 doses to desensitize one's body to peanuts.  If all went 'by the textbook,' we would have made it through 10 doses on Day 1 (May 22nd), gone in weekly for an updose for 20 more weeks, and we would have been done in 21 total weeks, or approximately 5 months total, or somewhere between Thanksgiving and Christmas of 2018.  Brandon made it to Dose 6 on Day 1, and 6 weeks later, we have almost made it to Dose 8, so not quite 2 more full doses in 6 weeks. 😬  We won't attempt Dose 8 again until July 19th, so after that day, we still have 22 doses to go.  Knowing how his body is moving through this process, I'd say that's at least 40 more weeks for us, at a minimum (assuming at least 2 weeks between updoses - some may be shorter, some may be longer.)  That's the end of next school year, at a minimum.  I say this, not to complain, but to show that OIT is not a 'one size fits all' type of process.  Thankfully, our doctor personalizes the doses to each patient and doesn't rush us through any thing.  And like I mentioned before, that's a GOOD thing.  We want so much for this to work for Brandon, 🥜 and for that to happen, we have to proceed slowly.  And so we will. #turtle  🐢

So that brings me to my next point, Ear Tubes.  Long story short, Brandon is having surgery to put in ear tubes on Friday, 7/13.  And it's his third set of tubes, by the way.  😉  We're no stranger to this procedure, and I'm honestly thankful that he's getting them again.  The past two times that his tubes have fallen out, he's started getting repeated ear infections within about a year of them falling out.  He had a double ear infection pop up quickly last week, which was his third ear infection in 3 months.  (His latest set of tubes fell out about 15 months ago.)  So while I don't like him to have to go through surgery, having tubes is just a better place for him, so we are thankful that we got into his ENT with a same day appointment and that she had one surgery day left this summer that we were able to slide into as well.  (Thanks for that double 'wink,' God.) 😇 I humbly ask for your prayers of protection over him and success for his surgery.  He's not overly concerned about the procedure at this point, he just doesn't want to puke after coming out of anesthesia. 😩  #priorities  😉

And so because he's having surgery on the 13th, we will skip an updose appointment next week.  He successfully updosed just this past week to 3.5 mL . . . inching back closer to that 4.0 mL stinker that his body didn't like back in June!  We'll try that 4.0 mL dose again on July 19th.  🤞 #turtles 🐢 😉

And so we celebrate the small yet big victories and blessings along the way.  Small steps up in his dose with no reactions, a same day appointment with his ENT, openings on her surgery schedule, an allergist who listens to Brandon's body and doesn't rush it.  These are all small steps along the way . . . and small steps add up to big long term victories.

I'll try to update after surgery next week~

Until then,
Momma Knows Best  🐢💚


Brandon's latest successful updose - 3.5mL of "Solution C" 




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