So, today was day 3 and while it was the end to a stressful three days, it is only the beginning for us. :) Today, we went in to the clinic and they did his vitals - blood pressure, temperature, height/weight, listened to heart and lungs and checked him out from head to toe. They also asked about any changes and how he did last night. Then, we mixed up his starting dose with some applesauce and fed it to him. He had some breakfast already and then he ate more while we were there. They have found that it is best not to give them the dose on an empty stomach...they do better when it comes at the end of a meal or when the stomach is already working on digesting some other stuff. Interesting! Anyway, he ate his dose and then we played and talked and waited. We have to wait for two hours after his dose to make sure that he is okay and not reacting in any way. So, we use that time to chat and play and just hang out. It is actually not bad at all! They are super nice and from now on, there will usually be another kid or more in the same area with us, so it is nice to meet other families and have the kids play.
Oh, I did want to say that I am going to keep it fairly general on here. I will not be listing the exact doses or specifics about the protocols used in the study. We didn't sign any kind of confidentiality agreement or anything like that...I just feel strongly that the study is not approved for treatment and I don't want anyone to think that they can attempt to do this on their own or convince their allergist to attempt it! The study is very deliberate, but also very individualized. For example, if my son had reacted yesterday to the second dose, then he would have started at the first dose size...there is no one size fits all here. They are very concerned with safety and that comes before anything in the study and the research. So, anyway, that is why you won't ever read any numbers or specifics on here. However, I do want to share the general process so that anyone else who is considering enrolling in a trial has an idea of what to expect. :)
So, after two hours of playing, they checked him out again and all was well. We made our next appointment, they gave me his bag of little plastic containers with each dose measured and labeled and we were on our way. Oh, the other thing we got today was a medical action plan - when to do what as far as Epi and Benadryl. It pretty much is the same as what we have now...for anything where two systems are involved or that looks severe - use the Epi! Then follow up with Benadryl and call 911. If it is just a little redness or something very mild, Benadryl should be fine, but again, monitor and use the Epi. As I discussed with our local allergist, they said the same...the EpiPen will save a life....don't be afraid to use it!
Now we are back home and tomorrow we will start our first day of home dosing....
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