Wind-burned

So here we are two weeks in and I feel like we are getting nowhere fast. Every. Single. Day. Coby is still having 'reactions', 'side effects' whatever you want to call them to his dose. And we are two weeks in already with most people being able to updose every single week.

We are supposed to updose this Thursday- is that really not going to happen? Again? And if we skip this Thursday then we are stuck for another two weeks (since the office isn't open on Thanksgiving Thursday.)

According to people in my OIT group he should be having ZERO reactions before updosing and we should be requesting a down-dose. Seriously?

Every single day after dosing he begins scratching- at his legs, his arms, his chest, his back. He rubs his nose because "it feels stuffed", he rubs his eyes. He rubs his lips because, "they feel wet." (This only happens for the 2 hours following dosing). He STILL has dots all over his body. Not to the degree of last Monday (when he also had strep) but they will not go away.

What the heck are all these (itchy) dots and why won't they go away????

I was so hoping that once Coby finished his ten day of antibiotics (which was yesterday morning) then his body would calm down. I had hoped that his little body taking antibiotics and fighting strep and fighting peanuts and getting used to zyrtec and flozane as well was too much- but that once the strep and antibiotics was done his body would calm down. SO WHY HASN'T IT CALMED DOWN YET?

Should we seriously be downdosing? Is it really possible that we started on too high a dose? That as soon as that very first 'speck' appeared on Coby's chin on day one we should have stopped at that point? 

Do we really need to go down a dose or several doses in order for his body to not react at all before continuing on?

I'm worried that Coby is going to feel so frustrated if we don't go in to updose this Thursday. He was so mad we didn't go in last Thursday.... and if we actually have to down-dose???? How could 1/6,000 of a peanut still be affecting him like this?

But obviously I can't share these thoughts with Coby because he still so hopes that this is going to work. And it can! But I feel like we are walking up a down escalator. How are some people able to updose every single week when we may be at UNDER our starting dose an entire month in? I know part of this is just speculation because we haven't even spoken to the doctor yet, but from what my group is telling me it does seem like skipping and down dosing is the way to go. 

Coby came home from school today and upon finding out that one of his spelling words this week is 'peanut' his face said it all.... but he was not UPSET about the word, he was DETERMINED and actually exclaimed, "I WILL DEFEAT YOU PEANUT!" 

When he was done with his homework he proudly showed me the spelling sentence he chose to write for the word- "Peanut".

"I am trying to destroy peanut with OIT."

People in the group are encouraging me that even if he has to down dose and stay steady for an entire month at that dose he can and will still get there. They are telling me that the beginning is the hardest as these 'toxins' invade his body and his body has to try hard to recognize that they are not dangerous- and once we are further into it it should go faster, but right now it's not even like we are staying still- it seems like we are only going backwards. It feels like we are holding our breath as the winds of this storm blow against us yet we continue to walk against it determined not to give up though at times we are feeling quite wind-burned.

Sigh. I guess we will call the doctor (again) tomorrow and try to keep our chin up. I need to keep reminding myself that it doesn't matter how slow we are going as long as we are going. What matters is that we won't end up in the 15% that OIT fails and that we can still be in the 85% that it works for. And if we have to go slowly and at times backwards it doesn't mean that we won't eventually get there. Success and safety is what matters not speed.