HOLY FRIGGIN' MOLY I CANNOT BELIEVE WHAT A DIFFERENCE A DAY MAKES!!! This time yesterday I was POSITIVE we'd be downdosing today.... AND NOW just 24 hours later---- we are actually UPDOSING back to our original take home dose tomorrow!WHAT THE HECK????? Talk about a 360 degree turn around!
In order to test my hypothesis (written in my last 2 blog posts) our doctor agreed that we should give Coby the placebo dose at the time he normally gets his REAL dose (and push off his actual dose by up to two hours).
Coby came home from school and I told him how we're changing it up again and going to try giving him two mini doses to see if that makes a difference. I had it all set up. I had the syringe filled with the grape juice and his cup of water and applesauce waiting. In addition, in order to make it look real- I had his purple jar of peanut dose out of the fridge with the cover off so it would truly look legit...
...but he was onto me.
Coby, "How come the color is a little bit different than usual?"
Me, "Huh? Oh I guess a tiny bit of water must have been left in the syringe so it diluted the color a bit."
Him, "Oh- whatev!" And he 'dosed'.
Him, "How come it tastes a little bit different?"
Me, "You just had a ring pop on the way home from school- you know that changes tastes of things."
Him, "Oh right." (Pheeeew!)
Him, "Well it smelled a little bit different too!"
Me, "What?!"
He starts to laugh, "I know, I know- I'm just getting a little carried away here."
I then proceeded to watch him for the next hour.
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| Resting after "dosing" |
COULD IT BE?????
I proceeded to take minute by minute notes. By the end of the hour he had:
- Swiped at his mouth 30 TIMES (compared to yesterday's 49 after a true dose)
-Rubbed at his nose saying 'it is a bit stuffy': 11 TIMES (more than after a true dose)
-Rubbed at his eyes: 2 TIMES (a bit less than after a true dose)
-Scratched at his body: 16 TIMES (a bit more than after a true dose)
I kept texting Yitz during the hour saying, "WHAT IS HAPPENING HERE?!" I could NOT believe it. I mean, I had a gut feeling that this may be the case- but actually witnessing it. HOLY FRIGGIN COW!!!!
After the hour was up Yitz called our allergist (I had to leave to get Mikey so I couldn't be on the speaker phone fessing up to the reality of what just happened to the doctor with Coby right there in the back seat hearing the entire conversation)
(And of course as Murphy would have it.... since I am SUPPOSED to get in the (true) dose at the same time each day- but in extenuating circumstances can push it off by an hour--- MAXIMUM two hours- the highway was a parking lot so I had to get off route 4 'waze'ing it to school through the back roads- and the round trip ended up taking me an hour instead of 45 minutes--- so I ended up getting Coby's dose in just one minute short of the 2 hour max rule. Talk about stress..... Haha--- I actually had my annual checkup at my GP today and she wanted to know if anything is causing me anxiety. Ordinarily I would say, 'nah- I'm fine' (even if I wasn't)- but this time I admitted to this OIT thing making me insane!)
So anyway Yitz calls me back and tells me, "The doctor says we can go back UP to his regular take home dose tomorrow!" WHAT ARE YOU SAYING?! WE WERE FRIGGIN GONNA DOWN DOSE AND NOW WE ARE GOING BACK UP TO WHERE WE STARTED???? IS THIS REALLY HAPPENING?
The doctor said that since Coby was on this (original) dose for several days before we had downdosed to the 1/12,000 level we can updose back up to the original dose here at home and if it goes well--- next Thursday we can come back into the office for his FIRST OFFICIAL UPDOSE!!!!! (I know I know- once again rein it in Stacey- do not get ahead of yourself!!!!")
The doctor told us the BIG reactions to watch out for (besides obvious anaphylaxis) is wheezing, hives and clearing of the throat. He told us NOT to tell that to Coby so we don't plant any ideas into his subconscious.
He also told us that he once did this placebo test on another child... and the child's entire body got covered in hives... FROM THE PLACEBO!!!!! Just the stress and anxiety and fear of his allergen was enough to cause that reaction!
CRAZY!!!!! I mean I shouldn't be too blown away considering for two entire weeks leading into the start of OIT I was covered in a rash simply due to stress but wow the mind is a powerful thing!
After dosing Coby the second time today (for real this time- but he did not realize the first time was fake)- I said, "Guess what--- you did so good with taking the two doses today- that the doctor said we can UPDOSE back to where you were TOMORROW!!!!"
Coby's eyes just about bugged out of his head- he was so excited! He did say, "but what about all my reactions,". I don't remember what I said back to him but somehow I brushed that off.
And so again I watched him for the entirety of an hour after his true dose and he actually had LESS symptoms this hour than he had for the last couple of weeks!!!! Coby even exclaimed, "Mommy, my body is cooperating now!" (I did recognize a few scratches and nose rubs and lip swipes- but probably less than a dozen as compared to the fifty of yesterday!)
I do feel bad because I had to enforce over FOUR hours of 'no exercising' rule as if both doses were true doses- but I had to do that for him to believe both were real. (And despite that he had still questioned the first dose--- when he took the real dose in he even said, "Now it tastes back to normal!"
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| Resting after (true) dosing again. |
I am so excited that we explored this crazy hypothesis of mine and the doctor didn't tell me I was insane! I mean, I know I can be- but this time it was REAL! Such validation!!!!
And so we are doubling his dose back up TOMORROW!!! And I'm so excited--- though come tomorrow I know I'll be petrified. Doctor did say going double can have some TRUE symptoms--- (and how the heck going forward will I know what is a true symptom and what is not?)
People in my OIT group keep reiterating that your child's body needs to be 100% accepting a dose before updosing to the next level- but if Coby is now dealing with these subconscious or anxiety issues- how will I know what would be a true problem and what is not a physical problem after all?
For example a couple of weeks ago his body was covered in "something" scary that required extra medicine to calm his system back down. So obviously something was happening. (though he was dealing with high fever, strep and antibiotics at that point too which always makes things harder on a little body). How will I know what is real and what is not?This detective mama ain't finished though... I am curious if I can figure out if these symptoms are his subconscious thinking he needs to 'put on a show' for me OR if this is anxiety based. And so I am borrowing a baby monitor with one of those tv screens for a few days- so I can set up a 'hidden camera' for his hour of observation and see if he has all those symptoms even when I'm not (visibly) watching him. (For the next couple of days though since we are updosing him back to the 50 micrograms I think I need to be in the same room as him.)
Is it REALLY possible that we may be able to go in for our very first updose next Thursday? (true that date is about 4 weeks after our original scheduled updose- but going from thinking we were going to have to downdose TODAY and never believing we'd ever get to updose- to the possibility of a true in office updose is HUGE!)
And I realized that in my earlier blog post from today I had posted that this afternoon I would be wearing several mommy hats- mommy, doctor, scientist and psychologist. I forgot to add a crucial one.... DETECTIVE MAMA!!!
However, I don't want to get too carried away because I do need to be able to recognize true and dangerous symptoms and not be quick to dismiss them. This is going to be quite the tightrope act.
But allow me, for just a few hours, to push my fears and anxiety about this aside and enjoy this small (though it feels HUGE) victory!
And once again, I must say: I CANNOT BELIEVE WHAT A DIFFERENCE A DAY MAKES!
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