Today I had read another post about a child who had been in maintenance since January and ended up needing an epi today. His mom said the kid said he wasn't feeling too well but she thought it was because he had eaten too much junk food the night before so she gave him his regular dose.
Wrong decision.
Anaphylaxis. Epi. Hospital trip. He's okay now.
But...
In maintenance if the child is sick he is supposed to either skip the dose or down-dose. If his environmental allergies are acting up too much he's supposed to skip the dose or down-dose.
Will I be able to recognize it in time?
What if Coby is coming down with something but I don't recognize it in time? And he doses? And it's the wrong decision?
I am trying to 'self talk' myself reminding myself that while kids in maintenance will get to eat whatever 'may contain' and cross contaminated items whenever they want (HUZZAH!!!), most decide not to gorge on too many peanutty foods (other than their daily dose). So that child is no longer in any real danger as he experiences his everyday life.
There will be practically ZERO chance of a reaction from regular every day life!!!! Even if the only things he eats say 'may contain' or is cross contaminated.
Before OIT a 'may contain' and cross contaminated can kill.
After OIT, 'may contain' and cross contaminated, even if he were coming down with something, will be able to do---- absolutely nothing to him!!!!
Sleepovers, camps, playdates, school buses, simchas, colleges, restaurants, vacations all completely open to him!!!
And as long as Coby is not one who will decide to eat the equivalent of his dose several times throughout the day, (which in turn would mean several '2 hour rest periods')--- his only real chance of having a true reaction is at his regular dosing time, if he were getting sick or something...
Every day life could have killed him beforehand..... after OIT he gets to experience life without the fear.
The fear will remain basically AT dosing time IF he were getting sick etc.
So I guess I'm rolling with that.
(Now, if Coby is someone who all of a sudden develops a love for butterfingers and snicker bars and pb & j sandwiches 24/7, we'll have to figure that out when the time comes....)
So I am attempting to push aside those occasional stories of 'reactions in maintenance' and instead focus on the other 24 hours a day, 7 days a week, 12 months a year.
Of safety.
Of happiness.
Of freedom.
Of living.
Honestly though, we had a bit of a rough start this week. I guess the doctor was right in deciding that Coby NOT do a full up-dose last Thursday and instead had him go from 1 to 1.5 (instead of 2). The up-dose went without a hitch at the doctor's office, but the following day it caused a flushed cheek that lasted nearly 24 hours.
The following day dosing caused an eczema type rash to break out on one of his cheeks too.
I honestly thought that we wouldn't be able to up-dose this Thursday, but thank G-d, his little body pulled it together and ever since then it has been smooth sailing.
(Really it is a miracle. EVEN if it caused a flushed cheek every single day it would still be a miracle. Because last time it caused a hell of a lot more than a flushed cheek or a simple rash.)
That brings us to Sunday. Coby had to skip another birthday party because they were bringing in an ice-cream truck. Hopefully, in the near future, he will no longer have to skip birthday parties, but anyway it was mother's day and I wanted to keep him! We all had a lot of fun beginning with breakfast in bed and then a boggle tournament. We didn't want to spend the day outside due to the high pollen levels and OIT but we wanted to do something, so we all did an escape room for the very first time--- it was sooooo fun!!! We then came home to carb Coby up, dose and rest for the next two hours (and watch a movie). Then back out for supper--- just a pizza store (maybe next year we can go to a real restaurant thanks to OIT!!!). After supper we heard music and smelled a campfire so we followed our ears and nose and there was a huge lag baomer celebration with free barbecue, ices, popcorn and cotton candy. (thankfully Coby was completely full so I didn't have to run around checking on safety) There was a live band, dancing and a campfire.
We spent a little bit of time there and it was fun... but upon leaving I realized, 'crap- we were just outside with high levels of pollen and up until last night he had dosing issues----' so we got home and straight into the shower he went. He was not happy about that, but was soon able to focus on all the fun he had throughout the day and not the annoying shower that was forced on him at bedtime.
Sunday dosing went well. And Monday. And Tuesday!
Fingers crossed being able to updose in two days is looking more likely than it had been. He will be trying peanut m & ms and I sooooo hope he at least 'tolerates' the taste. While it is crazy that I now currently shell peanuts in my own kitchen (and scrub down counters afterwards) for dosing
Though I am the first to admit that dosing with peanuts is sooooooo much easier than capsule dosing. I am still dealing with slight PTSD from the whole capsule fiasco! ;)
So onwards we go. 209 days and counting, but despite a hiccup every now and then, we continue to trudge forward...
For years I was the guy on the "I won't" and "I can't" step near the bottom.
But now?
I'd like to think that I am somewhere between the "I can" step and the "I will" step near the top (though maybe with a touch of vertigo...)
Faking it til we're making it. And it seems to be working.
Unbelievable!
Nine more up-doses to go!
And then one final food challenge!
We'll just keep on trekking...
No comments:
Post a Comment