All in all Coby is really enjoying his new life that OIT gave to him. He has done many things he otherwise would not have been able to do pre OIT.
Just in the last few months
-he's gone to the movies without having to wipe down seats
-Dunkin Donuts for Chanukah
-family events with no worries
-a bar mitzvah
- new restaurants
Of course we go with our epis, but otherwise it is no fear. He goes. He sees. He eats. No worries. It's wonderful.
It is the dosing itself that has been a bit tough at times. We spoke to the doctor a few times in the last few months as to our game plan.
Coby is now currently dosing with 8 peanuts every day together with the peanut powder. Ever since his big reaction in Montana we started the powder back at nearly square one and were slowly building him back up. (Before his anaphylactic reaction he was dosing with 12 peanuts for 2 days followed by 4 teaspoons of powder on the 3rd day.)
We were trying to build him up by just a quarter of a teaspoon of powder each week. And it is so strange even that has been giving us issues at times. He has had quite a few reactions as we tried to build him back up and in just the last two weeks he has had four more reactions!
Twice when we tried to go from 1 1/2 teaspoons to the 1 3/4 teaspoons he had issues. Once we just needed Benadryl to correct it and once we needed Benadryl and steroids.
When we tried to pull him up to the 2 teaspoon level a few days ago he again reacted. He needed Benadryl and steroids and so we brought him back down to 1 3/4 teaspoon.
Then last night again still at the 1 3/4 teaspoon level he reacted. Benadryl was enough to stop the hives this time.
Each time I try to figure out if there could be a reason. Last night at the two hour post dose time he was fine. 5 minutes later he ran across the living room. 10 minutes later he said he was itchy and boom there were hives. Maybe even that 10 foot dash at the 2 hour mark was too much exercise too soon? (Even though most people only need a 2 hour rest period, Coby seems to have had reactions even 6-7 hours post dosing...)
The good news about this is for the first time since this whole OIT thing began Coby began telling us himself when he felt itchy. He never did that before. We would just randomly lift his shirt to find bloodied scratch marks and hives all over. Now all of a sudden he began telling us as soon as it began which is why sometimes now Benadryl was enough to stop the spreading.
I am VERY grateful that he finally learned to tell us when a reaction is beginning.
The doctor told us he would like Coby to get up to the 2 tsp level of the powder and that is where we still stop. That level is not enough for him to free eat peanut butter products (which he has no interest in doing) but it will be enough to protect him from all cross contamination and 'may contains' of peanut butter products. The 8 peanuts he continues to eat daily is enough for him to free eat any peanut products.
Oh and get this... one time during dosing Coby actually asked me to give him another six peanuts!!! My jaw hit the floor.
It is actually ironic that we are needing to get him up to the two teaspoon level of powder now. The reason we need to get him up there.... is so in one month time we can drop him back to the one teaspoon level of powder without fearing the one teaspoon will bring him a reaction. He doesn't know it, but we are going back to Disney in January. The reason he doesn't suspect it is because he knows since we went on a flying vacation this past summer which we never do, we can't go on a flying vacation this winter. Plus, Mikey's senior class trip in May is to Florida and so we are not going to have Mikey go twice in four months. (Yeah right!)
The doctor wants Coby dosing each morning in Disney with 8 peanuts and half the powder level. He said as long as Coby's body is used to the 2 tsp for a few weeks before going, he shouldn't have a reaction to the half level, though we can never know for sure. After Disney we'd again have to build him back up to the 2 tsp level. And then he wants to see us back in his office in February.
I'm a bit traumatized about dosing with powder on vacation after what had happened in Montana with dosing him with the powder.
The last two times we went to Disney we've also had dosing issues (and this was before we began adding the powder to the mix)
Two years ago in Disney, just three months into OIT Coby spiked a fever for a few days which had us paging the doctor several times to figure out how to dose him and to try to keep his fever down Thank G-d that only lasted a couple of days.
Last year in Disney on our day of arrival Coby had a reaction to dosing several hours post dose.
ARGH this powder thing is no joke.
Praying his body re-acclimates to the powder and Disney goes off without a hitch. I am so excited because for the first time in SIX years--- all 5 of us will be going together, Josh who hasn't been there with us since he was a junior in high school, will be joining us for the first few days, before he starts his final semester at college. It also will be bitter-sweet though since it is likely Josh's last trip with us and very possibly Mikey's as well before he goes off to either Israel for the year or college.
Cannot wait to go though. Coby thinks that instead of February that he has his allergist appointment early the afternoon when we are really going to Orlando. We will pick him up from school early to put on his latest OIT shirt I bought him. (for those of you who don't know, every single week during the OIT process he had a special OIT shirt for each updose--- from the peanuts gang, to 'courageous' to 'level up' to 'oit graduation' to '24 peanuts challenge accepted.' This time though it has nothing to do with OIT it simply has Mickey Mouse hands pointing to him that says "THIS KID IS GOING TO DISNEY!" )
Soooo need these dosing reactions to stop though and for us to have a smooth ride this trip. After what we've been through with our last few vacations, I think we've earned it.
Fingers Crossed!
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