UPDOSE DAY!!! FINALLY!!!!!

The day that I thought would never get here actually got here! COBY'S FIRST UPDOSE APPOINTMENT IN AN ENTIRE MONTH!!!!

Just two days ago I was pretty sure we'd have to postpone yet again. We spoke to the doctor this morning who told us to come on in because each time they assess the child before going ahead with dosing anyway. Coby got home from school and ran into the house all excited that we actually were going to try to updose today! He had 2 minutes in the house to pee and change before we had to jet out the door.

Carb loading in the car on the way to updose

Once we got thereI told her about some new 'symptoms' (real or not- I do not know) he had this past week. I also told her how he seems to have a runny nose for a few hours after dosing so I don't know if it's a cold or environmental or what but usually by morning he's fine. We even played the video that I took of Coby noisily breathing after yesterday's updose. She told us we should switch his flozane to the morning instead of night- since while it is effective 24 hours it is most effective its first 12 hours and this way it will be working best during dosing time.  The PA checked him out and said that his nose was a bit 'crusty' but no sign of allergy (apparently inside of nose changes color if it is) or a cold or infection. His lungs sound completely clear, his throat looked good (although his tonsils were huge though I think we all have huge tonsils) and she was 100% confident in updosing him today!

YES!!!!!

She did, however,  tell us that she detected a heart murmur so we need to get that checked out. We had recently gone through this with Mikey this past summer and at the time thought the murmur developed from his lyme disease since it never had been detected before. But who knows? Now Coby's got one too? Maybe it's a hereditary thing. Hopefully it's nothing, but obviously we need to make sure of that- but that's for another day (hopefully this month since we easily met our deductible this year).

She checked over our log of the last 30 at home doses and the symptoms that went with it. She again asked to see a picture of Coby's rash he got shortly after the strep crossing all "T"s and dotting all "I"s. Covering it all.

A nurse came in to check his pulse, blood pressure, blood oxygen levels and lung functioning. 

After they got his baselines it was dosing time!!!! Although this was our first updose at the office- in actuality he did have this dose one time before---- on that day one, nine hour appointment. That was the last dose of that day that caused so much discomfort and itchiness that the doctor called it a day, and downdosed our take home dose to the smaller level.

And now, we were going to try that dose again and see what his little body would do. Coby was sooo thrilled he was going from 2ML to 4ML and getting double that "yummy grape juice". His syringe was even fatter than all the others he had. (He actually ended up drooling a tiny bit onto his shirt which you don't want to be doing since every drop counts but the nurse said it's okay, it was just a tiny bit---it's not like she could dose him with more because that would have been a guess and taken him over his threshold- but sigh)

Sucking out every last drop. Bliss!

And then the waiting and watching began. They told us that if anything at all comes up call out to them- they would be right there and every few moments a nurse would come in to make sure he was feeling okay. On top of that, every 20 minutes they took his vitals. And he did awesome!!! Yes, he still did an occasional scratch & lots of mouth swipes- but now I know not to completely (inwardly) freak about those since he did the same thing with that placebo dose.

HE DID IT!!!!!! 

Appropriately this shirt says "fearless". That's my boy- fearless and determined!

He was so excited and proud of himself. He told me how his body basically cooperated and he was so happy!

While we were there there were two other kids updosing. One person was up to 100 milligrams. Wow- that seems forever away to us, though that mom was saying how she's so thrilled to be where she is because a few months earlier she didn't know she'd be able to get here- as it was a bumpy ride. Gee, that sounds familiar!

 The other boy looked to be about 12 and he was crying and panicking because he was about to dose with an actual peanut. I heard that often kids (and parents) break down at that point because until then the peanut is not recognizable but once you get to dosing with actual peanuts- they see the form of what had previously tried to kill them.

Out of curiosity we asked how many updoses are left until graduation and she told us that assuming there are no future down-doses (one can hope) it would be 26 more doses. TWENTY SIX! If Coby is able to go every single week (one can hope) that would be 6 and a half months away. If he would need to stay on a dose an entire month like he did this time that would be over TWO YEARS away.... realistically speaking it's probably somewhere in the middle.

26 seems like a whole lot.... but not when you realize how much is to be accomplished in just 26 updoses.
 Coby is on 100 micrograms (the equivalent of 1/3000 of a peanut).
Graduation takes place when the child gets to 12 full peanuts. (A food challenge of 24 peanuts occurs a few months later).
So in JUST 26 visits he'd be jumping from 1/3000th to TWELVE going up THIRTY SIX THOUSAND TIMES! 
36,000 times in JUST 26 visits- yowzers. 
That seems monumental and honestly a bit terrifying. But we are going to give it our best effort.

Before leaving and receiving the new fat syringe and jar of the new peanut solution we talked to them about what happened to Oakley and how terrifying benadryl is. I reminded her of how a few weeks earlier I was too scared to give Coby benadryl despite being told to do so. I was too scared it would mask anaphylaxis, so I waited three hours til the risk of anaphylaxis was mostly gone and only then did I benadryl when he began to scratch himself bloody.
So she sat with us and worked out a plan.
If anything (c"v) happens at the office- they are prepared and they can act fast.
If we are dosing at home and we are in doubt- epi.
If he has any mouth or throat itching he should rinse out with water (which often makes it stop) and just watch to see if it progresses. DO NOT BENADRYL.
If he has a few hives, call the doctor and watch to see if it progresses. DO NOT BENADRYL

If two systems are involved- even if it seems mild- EPIPEN. Even if there is only one hive and vomiting- epipen.
If breathing is involved and no other system- epipen. If he complains of tightness in throat-epipen.

I feel a little better- that they wouldn't expect me to benadryl with a single (or even a few) hives.

She said most (but not all) of the time the risk of anaphylaxis is greatest that first hour after dosing (unless there's extenuating circumstances like being sick or if the child begins exercising/getting heart rate up/running etc.- too soon- then anaphylaxis can occur past that first hour)

Door to door we were gone about three hours. Three hours may seem like the time commitment to do over and over again. But it is 'just' three hours (obviously not taking into account the two hours of dosing, observing etc each day at home).  There are people who drive five hours each way to get to an OIT doctor. There are people who get on an airplane every single week to get to their OIT doctor. Because we all realize if this works it would be so very worth it making all those sleepless nights, nerves, symptoms, cost, hours of travel feel like just a drop in the bucket.

Hoping and praying for a smooth symptom-free week and who knows- maybe next week we'll even get to go back and updose yet again. Dare I to hope...