We downdosed Coby today to half of what he was one.... AND HE HAD THE VERY SAME REACTIONS as yesterday! The thing is he does NOT tell me anything and so I have to watch him like a hawk. If I weren't watching him like a hawk for 90 minutes after each dose I would think, 'oh he is fine- he isn't complaining at all.'
Yet I watch. And for a half hour all seemed okay. And then the 'mouth swipe' began. And continued, again and again and again.
Why?
"My mouth feels wet." It didn't look wet- but it feels wet- maybe he felt tingles and it felt wet? I don't know. He said he doesn't know what tingles mean. Today he admitted that his mouth felt a little itchy too. (THIS can be normal- the same as when someone gets an allergy shot- the site of the shot can get itchy- so the place the peanut solution touched- lips or throat can get a bit itchy.)
45 minutes in to it, an itch of the knee. Then his armpit. Then the other one. Then his belly. An hour & a half into it (which should be outside the bulk of reactions)- his nose started getting swiped. WHY I ask him. "It feels stuffy now."
Why the heck are we having the same reactions as every other time?
We sent a picture of what his rash looks like now to our allergist and he said, "it looks like an antibiotic reaction more than a peanut one." (Though the big one from last Monday may have been a peanut one.)
I post on my OIT group and they tell me if Coby continues like this one more day we need to down dose even more.
That we are supposed to be 'sneaking' the peanut into his body without it recognizing it. Of course AT TIMES there can be a reaction- even an epipen needed one- but there should not be daily reactions. It should be sooooo tiny that the body barely registers it.... and then you get to updose- and maybe a day or two of some adjustments, but then that is it. WE DOWNDOSED--- yet his body reacted the very same way.
And then they start discussing dosing times- of dinner time vs. earlier and I start explaining updose times at the doctor's (if we ever get there) are 4:15 and it's supposed to be a 24 hour give or take an hour or so window difference- so I cannot dose at 7PM and then updose 21 hours later and then the following day 27 hours later.... and how I'd be scared to dose so close to bed time- just in case....
And they ask me if it's possible to get more food into him before dosing? My kid is soooo picky and such a tiny eater- I am already practically force feeding him his half bagel or banana or bowl of noodles before dosing followed by a bowl of applesauce. I am literally feeding it to him as he is begging me to stop, "I am sooooo full," and I am worried about giving him a stomach ache. Yet on the boards they are telling me, 'maybe he isn't eating enough with it.'
AND if this is going to work- how long am I supposed to be 'dosing' him with all that food? His entire life? Will he have to have this regimen every single day at maintenance dosing time?
And they are suggesting that even though it 'says' zyrtec stays in the system for 24 hours, sometimes it is out of the system at 18 hours- and how I should give him zyrtec at least an hour before dosing. I had been giving it to him 45 minutes before dosing- at 3:45- as soon as he got home from school.... I didn't want to dose him at 4:45---- because I need to be carpooling at 5:25/30 and I really wanted the major observation hour done before I was stuck in the car for nearly an hour with him. THE MATH JUST DOES NOT WORK!!!!
And then there's the whole microgram vs. milligram debate. They said don't go past 3mg on day one. Which is 3 milligrams (our doctor's goal was to get to 5 milligrams which is equivalent to 1/50th of a peanut). Now they are saying they MEANT micrograms. I told them microgams is NOT mg, but rather μg. And then they said they were confused- and I told them Coby is now only on 25micrograms- but to convert that to milligrams- he is only at .025mg. A milligram is 1,000 times as much as a microgram.
And my head feels like it is spinning.
And I am so confused. Do we really have to downdose? AGAIN? How much further down can we go? Maybe on day 1 when I noticed that very first mark appear underneath his chin-THAT should have been when we stopped (though I think that was only like 3 doses in to the day) Maybe we should have stopped at the 1/1,000,000 dose- we may have gotten ahead faster than it seems like we will this way.
And people keep saying, 'go slow, go slow.' I am trying. I am going backwards. I don't understand this. Part of me really wishes we started at the very first dose as our take home dose because then there'd only be one way to climb- and that is up. Now I am full of question marks. Some doctors dose twice a day- others do once a day. We are doing once a day. If all goes well we can go in for updoses every week. (We are not going in for another 2.5 weeks AT LEAST)- others say to ONLY go in every other week at most.
And they are telling me to hang in there- that the beginning is the hardest and it gets easier- but augh!!! this is soooo hard!
Coby questioned me when he saw me only fill up to the "1ML" mark today. I had planned on telling him afterwards to see what would happen without him knowing we were down-dosing, but the kid is too smart for that. I explained to him how it's good we are downdosing, so hopefully his body will accept it better and we'll be able to proceed without his body hurting and get to that graduation point. He seemed 'okay' with that.
Earlier in the afternoon when I gave him his Tuesday Nutella dose (which he has to eat weekly after passing his food challenge) ,he was fighting it begging not to have to eat it. (I know, I know- who doesn't love nutella? Refer back to my saying how I have an extremely picky eater) I had said, "Sometimes we have to go through icky things to get to the really good things."
A few minutes later I was making dough for home-made pizza night and I was complaining about the stickiness and ickiness and how it's so annoying to make dough and my little smarty pants threw my own words back at me. "Mom, just picture the delicious pizza we will get out of it. As you said, 'sometimes we have to go through the icky things to get to the really good things."
When I began to laugh, he responded, "Hey, you live and you learn!" Yes ladies and gentlemen, I've been served by my 8 year old.
Inhale. Exhale.
I just wish it weren't this hard so soon after leaving the gate.
No, I WON'T give up.... but my head hurts :(
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