...we are not down-dosing quite yet....
Yitz did leave to work with the cooler and the ice ready to pick up our down-dose, but I've had a nagging thought the last few days.
WHAT IF unconsciously Coby is reacting because he thinks he is 'supposed to'. WHAT IF he doesn't have control over what he does but the basis is NOT physical?
I've had a couple of disturbing dreams about this whole thing the last couple of nights (shocker) one in which he required an epipen as we were lost in some store but something isn't resting well with me.
I know, I know that this may be grasping at straws and it is very probable that he is indeed having symptoms to his dosing, but I still have that nagging mommy gut that says, 'what if'. What if he likes the attention it gets him? What if he realizes the spotlight is on him that hour (plus) and what may have began as possible real itchiness etc. is continuing for another reason?
We called the doctor today and he actually agreed with us. He said when we describe Coby's symptoms to the doses- what we are describing are not COMMON symptoms of OIT and usually not that far in (close to an hour after dosing at times). Yes, yes- there are a few people here and there who have delayed reactions and who have 'excess saliva' etc. BUT.... How much further are we going to keep down-dosing before testing this theory?
I was actually shocked when the doctor agreed it could be 'emotional' responses rather than physical ones. I thought he'd tell me this is way too far-fetched, but whaddya know... The doctor agreed that before down-dosing I need to test this out and so tonight we will be giving Coby a 'placebo dose' (besides his regular dose). I feel so bad that I will be deceiving my Coby. Ahhhh wonderful mommy guilt.
But I'm gonna have to suck it up and do it anyway. Coby already knows we are fiddling around with the doses trying to figure out what will work so I'm hoping he will buy into the "double dosing" of tonight. As usual when he gets home we will fill him up with carbs and dose him (with the real one) and watch him for the hour before picking up Mikey from TABC and not allowing exercise for 2 hours.
And then at 6:30sh I am going to do it all over again, ("Coby, the doctor wants us to try dividing up your dose into two today to see what happens)--- but this time with the placebo dose. I will pull some grape juice up into the syringe (his peanut dose is diluted into purple kool-aid so it will look the same) and he will lie down on the couch and again I will observe and wait and watch for that hour---- not worried about an actual reaction with this 'dose', but wondering if he WILL 'react'. If he does 'react' it will prove to be the placebo effect. And if he does 'react' to the placebo dose we can longer sure if he's actually reacting at all to his original dosing...
This will be quite interesting. If Coby has the same reactions to both doses---- then IS it a psychological reaction that he was 'trained' to do in some sense and he IS in fact tolerating the dose? And if it is a psychological reaction--- then in the future how will I be able to determine what is a TRUE reaction and what is not. (obviously a reaction requiring an epipen cannot be 'faked'--- not saying Coby is faking but perhaps is subconscious is causing him to respond). I know we cannot updose until his body is used to the previous dose- and it should take just a few days to tolerate the updose (notwithstanding extenuating circumstances)--- how would I know what's real and what isn't?!
But that is getting ahead of myself- one step at a time, one foot in front of the other- we need to see what happens tonight before my brain jumps to all those other scenarios. Gotta rein it in Stacey!
SO.... we will not be down dosing today. We are to call the doctor back tomorrow and let him know what happens. If Coby only has symptoms to the true dose, then we will down-dose beginning tomorrow. If he 'reacts' to both doses.... I don't know what that will mean. This is definitely gonna be interesting.
....dare I to hope again?
**we actually ended up doing his placebo dosing at 4:30 with his real dosing at 6:30
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