Coby is acting so brave and excited and I'm trying to hide anxiety from him but he knows why we are doing what we are and what could happen. After dosing today he started walking in slow motion to get something & I told him, "you can walk regular the 10 steps, just don't run," He said, "Nah- don't want to risk going to the hospital."
I was a bit nervous last night when I found out that I was actually supposed to shake the dose up before giving it to Coby and I didn't do that! Did it end up okay? Did I end up giving him too much? Too little? I knew to shake it up today but was worried it wouldn't be exactly the same as yesterday without the shaking.
Coby took his dose and said, "yummmm! Can I drink that whole thing?!" He loves that grape koolaid, but drinking that whole thing would be a definite trip to the hospital.
After dosing today I saw him scratching a bit, and he had to go to the bathroom 20 minutes after dosing (same as yesterday)- which is not like him, so I'm wondering if that's his little tummy trying to get used to the dose.
He didn't complain after taking the dose, but I was watching out of the corner of my eye and seeing him scratch a bit and trying to decipher any movement that kid makes. My gosh of course it can be just a scratch, but what if....
There are so many stories of kids doing fine for several days and then WHAM out of the blue big reaction. So there we are him playing on the couch on the phone or watching tv, a 'relaxing hour' but your brain is on overdrive. Watching. Waiting. Hoping.
After the first hour we had to go pick up Mikey from TABC. Sitting in the car is not exercise- perfect, kid barely moving in there! (but of course what if a reaction comes and I'm stuck in traffic.... but you gotta live life to a certain extent) And wouldn't you know it- there was a big accident up ahead and route 4 was a parking lot. Normally I am an early person and being late always stresses me out. I asked Coby to text the boys to let them know we were going to be late. Coby is pretty adept with the phone but the texting was exasperating him. I told him to forget it, it's fine- but in the back of my mind I was thinking, "crap- he's stressing- we were told to avoid stress. Any stressor on the body can cause a reaction, please be okay!" Thankfully all was okay.
BUT (of course there's another but)- when Coby went to put on his socks to get in the car he got very frustrated with them (which is not like him) and was lying on the floor grumbling and upset and it is soooooooooooooo out of character for him.... He had his second dose of zyrtec today and we were told a side reaction can be a mood change/grumpiness/behavior change. But how would I know if he's just stressed from all this and it will come out in different ways, or if it is indeed a reaction to the zyrtec and we should switch medications?
There is soooo much that is unknown. It is not an exact science. Smooth sailing for a day or two or even a month or two doesn't mean the next month or two will be okay. Someone in my OIT group said after smooth sailing for the first month her daughter's body rebelled and the child began throwing up non stop for several hours- and the doctor made them quit OIT for ta few months for her body to chill out a bit. She is gearing to start up again.
Meanwhile I was feeling a bit frustrated that we only got to 1/6000 a peanut on day one but they reassured me only 1/3 of kids get through all the doses on day one, and slow and steady wins the race. Someone else said their child reacted on dose one on day one- and now that child is up to 5 peanuts a day.
....but still so many questions. This '2 hour rest period'---- is it forever? If Coby graduates he'd be on a daily dose of anywhere from 8-24 peanuts a day- after dosing I believe that 2 hour rest period is still in effect. Will a teenager who is running out with his friends going to listen to that? The doctor actually will conduct blood tests through the months and through the years to see if his IgE numbers are falling. They are soooo high right now (he is class 5 in severity) but often after OIT the numbers fall and if they fall low enough the child/teen/adult may not need a 2 hour rest period- maybe 1 hour, maybe none... I so hope so. Because at that point it won't just be the once or twice a day dosing (meaning 2-4 hours of rest each day)- the child would be able to eat cross contaminated things--- is there a 'rest period' whenever he eats a 'may contain' item? What about if he eats actual peanuts besides the maintenance dose- like a snickers bar- does a candy bar then mean 2 hour rest period? Does that mean he still has to be careful at birthday parties/bar mitzvahs- b/c if he eats actual peanut he won't be able to dance and run around?
Inhale. Exhale. One day at a time is all we can do. You keep putting one foot in front of the other and do it despite the fear. Because the most important thing is PROTECTION. Even with all the unknowns, how wonderful would it be knowing one wrong bite will no longer have the power to end his life? How wonderful would it be knowing we no longer have to worry about cross contamination. How wonderful would it be knowing he will not have another touch or airborne reaction. That already opens up the world to him. Anything beyond that is really icing on the cake. (and however far we get would mean that many more layers of protection around him) And our doctor is pretty confident that IYH Coby will get beyond that (and in 2 weeks his doctor is actually going to be on TV discussing OIT!)2 and a half hours since dosing and doing okay... and so I have to be happy with that for today. My child is still safe. My child is still okay. And for now everything else is just extraneous. And hopefully in time all the pieces will fall into place.
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