This morning Coby was finally old enough to fly in EAA. We had taken Josh & Mikey a couple of times when they were a bit younger but Coby had always been too young since you need to be 8 in order to fly. Finally, this morning it was his turn!
Of course as with any outing, accommodations needed to be made beginning with an email prior to even setting out. The head of EAA e mailed me back saying they'd be able to accommodate Coby as long as we are there at 8:45 to insure he is on one of the first and cleanest flights. (the program was from 9 to noon). We arrived at that time and saw that there were snacks already out for the kids including dunkin donuts (which is a no no for Cobes), which had my internal panic button going off a little bit, 'what if Coby is not first on the plane and kids eat the donuts and their sugared hands end up all over the seats and then Coby touches those seats and and and and..... But anyway they made a note on his waiver about his allergy and spoke to the various pilots. One pilot actually admitted he had just had peanut butter and jelly and it was possible that some residue was on his fingers and inside his plane. These planes are TINY and we certainly didn't want to risk a reaction in the air when Yitz and I weren't even allowed to be up there with him. (Mikey was still young enough to go so that gave us some reassurance!) They found us a pilot whose plane was completely peanut free and clean for his first flight of the day and they were off! And they had a blast!
How nice would it be if in the future Coby can show up whenever (instead of first thing in the morning), get in whomever's plane and eat whatever he likes and not worry about a touch or cross contamination reaction. I cannot believe that this Thursday is his consult for OIT! I already have two dozen questions on my list based on the hours and hours of research I have been doing.
Before we get to that consult though, we have to get through the first days of sukkot. Coby wants to participate in the shul's sukkah hop which of course is another thing that can be stressful. Are there home-baked goods? If someone eats a home baked brownie and then reaches into the bowl of the safe chips, then those chips no longer are safe for him. What if there are things which 'may contain peanuts', or things that for sure contain peanuts. "Don't eat unless we tell you it's okay Coby, don't touch your face Coby, we need to make sure Coby." How nice would it be if in a year or two he can participate without this weight on his back.
We started teaching him about his allergy as far back as we can remember.
"Peanuts can give Coby a big---- BOO BOO!"
"Peanuts are stupid head and stupid and doody head and cooky head and stupid head."
"I'll double check every plate or bowl cause I've got allergies under control!"
So while I am cautiously optimistic but also downright petrified! Why is it that the original protocol for this was a 4 year journey- 2 years of peanut flour, 1 year of 8 peanuts daily, then 1 year of home maintenance followed by the food challenge; yet now many doctors seem to try to rush it into a few months. I have heard great things about my doctor, but also read that he can be quite aggressive in his protocol. The more aggressive the protocol the higher the chances of reactions. The more I research the more questions I have.
Why is it that when on maintenance some children are able to handle peanut m & ms okay, but when they switch to reeses pieces, they had a reaction? Why is it that a child 'throwing up' may be 'okay' enough to continue without epipenning? Why is it that if a child starts having an itchy mouth it can still be 'okay'. How would I not be pouncing on him worried that if this were turning into an anaphylactic reaction every second counts.
....BUT how wonderful would it be if it actually worked (enough)?
We actually had to put Coby into a different school than his older brothers went due to his allergy. Would sleep-away camps now be a possibility for him? (though selfishly I wanna keep my baby home!!!! ;)
And here is where irony comes in.... if the doctor says Coby really and truly will need to be dosing every single day in order to desensitize and keep his allergy at bay, HOW would he go to a sleep away camp that is nut free? Would the nurse hold his dosage in her office? Or would he not be able to attend after all? How's that for irony? In fact, the day camp he goes to has an overnight once each summer. Will the doctor say it's okay to skip that evening's dose or will Coby actually have to skip the overnight that he so look forwards to? Never in a million years did I think that a nut free camp would be a problem for us!
But I am getting way ahead of myself, daring to dream of the success of this treatment because he has a long road before he gets there. And the earlier on in the treatment the more difficult it is. Could there actually be a light at the end of the tunnel? And one that is not an oncoming train? I think in this case it may be a little bit of both. As Coby keeps exclaiming, "I am NOT going to give up!"
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