...and here we are the night before Coby's allergy tests. It was so strange getting that reminder phone call once again about Coby's Thursday afternoon appointment. I mean, it has been more than 2 months since he's been there last. We used to get that reminder phone call every single week.
Coby has been freaking out a bit about tomorrow's test. He's nearly in tears about "my blood shot". And he's very nervous about all the pricks that are involved in the skin test and he remembers vividly how itchy he got last time around yet not being allowed to scratch.
Tomorrow they will see if OIT had any effect on his IgE numbers at all. It's kind of a crap shoot. They told me not to be surprised if Coby's allergy level got even worse. (He was/is extremely allergic at level 5). After all his body is being flooded by his allergen on a daily basis and it may make those numbers climb out of whack.
While doctors are hopeful the IgE numbers will begin to fall it still may not be for years to come.
Coby is praying that his numbers fell substantially. If they did, they may allow him to skip dosing a couple of days a week. Or they may allow him to shorten his rest period a bit.
But I don't know....
Any change worries me.
Of course I want his numbers to fall, but I'm also asking myself- why fix what ain't broke... and if dosing every day with a 2 hour rest period has been working, why mess with that?
(I know, I know... dosing the way we do now is not feasible to do forever (though it very well may come to that). Teenage Coby, young adult Coby--- may forget, or he may be out with friends and may not be able to sit still for 2 hours or he may be at college or on vacation and not have his dose with him, who knows. The ultimate goal is that this leads to the cure...)
I feel for my kid who really does not want that 'blood shot'- as any mom would feel for her kid... but while the blood test itself doesn't worry me.... the RESULTS that will come in a few days are what worries me. While I am still too afraid to tamper with how we dose him, I still want/need to see those numbers begin to fall.
Tomorrow's skin test is a whole other story...
Skin is the last organ to desensitize from its allergen since it is the biggest.
Last year, for the skin test, they decided to dilute the peanut solution down to 1% of what they usually do due to the severity of his allergy.
Despite it being diluted by 99% his reaction ended up being 'too substantial compared to the amount of peanut solution we put in him' and they ended up treating him with benadryl andsteroids and watching him for quite a while to make sure it didn't progress further.
So what will happen tomorrow?
I previously asked Jesse if they will once again be diluting it down to 1% so they can accurately compare this year's results it to last year's.
She said they probably WILL dilute it down to that to start, BUT if THAT test comes back negative (dare I to hope), they would probably do the peanut skin test at its regular dose--- which is 100 times the amount of what he had done last year.
Um---- Skin last organ to desensitize yet 100 times the dose????
Can something happen from that tomorrow?
One year ago today Coby was struggling with his 1/12,000th dose. and now he eats 12 peanuts every single day. That is crazy. That jump is way more than 100 times, but still I am worried about the skin test tomorrow. Though I must admit, I also am quite curious for those results.
They will also be testing his environmental allergies to figure out a plan about when/if/and for how long we will begin medicating him with the flonaze and zyrtec to keep those allergies at bay.
He was put on both those medications last October and taken off in June.
Ideally they don't want him on extra meds for all that time--- but if we don't get control of those allergies, those allergies together with peanut dosing can bring out a BAD reaction, and obviously we do not want that to happen either.
They need to help me figure out the balancing act.
So that is what tomorrow (and the days that follow) will bring.
After tomorrow's tests I believe Coby is on testing break for the next 6 months.
In the meantime I am constantly replacing Coby's wardrobe these days. During OIT he gained TWELVE pounds!!! That brings him to about the 50th percentile mark so that's good but it also means he outgrew all his clothes--- especially his pants.
We search online for clothes and I can't help but noticing all the shirts that would have been great for Coby's up-dose appointments if he were still going through it (but thank G-d he is not!)
I still can't believe all we accomplished in under one year's time. I am re-reading my blog and am in awe of all my kiddo has accomplished. I read about all our doubts and questions--- and so wish the me of today can talk to the me of one year ago. All the struggles, all the unanswered questions and doubt, not knowing what was coming---- and boom now year later and we are on the other side.
It is CRAZY!
There are three things in my life that make me say HOLY CRAP DID I REALLY DO THAT?
The first one was going through all those years of fertility treatments. Never in a million years did I imagine I'd have the courage and ability to go through all that. I look at my Coby bear and am soooo thankful that we did it, obviously, but still to this day when I think back to it I shake my head in wonderment that somehow we got through that. (I sooooo wish I blogged about that, but we were mostly keeping that under wraps while we were going through it and only shared some of our story after we made it through the other end. And I only began sharing about it when quite a number of people assumed Coby was a 'whoops' baby and I needed them to shut the hell up and realize he is the very opposite of a whoops baby! I actually did end up writing a book all about it. I didn't try to publish it though I did send it to people who asked to read it.)
The second one was allowing Josh to get on that airplane that took him away to Israel for the year. He's been back for 2 and a half years now and I still have no idea how I didn't tackle him to the ground refusing to allow him to get on that airplane.
The third one was going through oral immunotherapy. It was terrifying. It was impossible. Yet here we are on the other side of it and I am simply blown away.
I never really thought myself as a strong person but I guess you figure out exactly how strong you are when you need to be.
And still, several times a week it seems, I am reading about another food allergy death. The most recent one being a 3 year old in Manhattan. His school knew he had a dairy allergy yet one of the teachers gave him a grilled cheese sandwich. No mention of an epipen either. Just that they got him to a hospital and he died.
WTF???
None of that makes any sense!!!!
Food allergies have no cure. The closest thing to that cure is OIT yet OIT is not a 100% guarantee of never having another reaction either. The ONLY thing that can save lives is education. People don't get it!
Recognize the signs.
Don't feed an allergen to a food allergy kid.
Have an epipen.
Know how to use it.
This little boy dying is so stupid!!!! Besides feeling so bad for his family, it pisses the hell out of me. Get a clue people!!!!
Ignorance kills.
Once again I am thanking my lucky stars that Coby did OIT and how much safer he is now. I (mostly) don't have to worry about the ignorance or stupidity of those around him. I (mostly) don't have to rely on the education of those who care for him.
A few days ago we practiced epipenning with all our expired epipens. This was the first time I allowed Coby to do it himself with no assistance at all. I also re-taught him how to give it to himself if (G-d forbid) he needs to.
He even made a video that can teach others how to properly give an epipen.
And once again it is also about the small things...
...for the first time ever Coby was able to buy candy from a machine. He never could do that before because even if that particular candy may seem safe--- you do not know about the facility it came from nor do you know if another, possibly unsafe candy was in that same machine before causing cross contamination.
...he was very excited to be able to go to Shoprite with Yitz. He hasn't been there in forever. When I tried bringing him when he was 3, we passed by a bin of peanuts and he started having a reaction. Itchiness, coughing, sneezing, runny eyes--- we had to get out of there fast... And now----
...we celebrated his one year OITversary in 2 ways. On October 20th--- the date of his OIT consult and the beginning of the journey for us we took Coby to MOCHA BLEU. He was plotzing to go to a dairy restaurant with waiters. It was absolute bliss for him.
and we celebrated his one year of peanut dosing (which was Oct. 31st) by having him eat goobers. When we began OIT we did so with much fear and trepidation remembering that horrible night when 2 goobers almost took him away from us. And now we decided to show those goobers who is boss. Instead of eating just 2 goobers--- he SAFELY ate 3! (He could have eaten the whole box if he wanted to- but since he doesn't like peanuts. or chocolate. he was absolutely fine stopping at 3--- he just wanted to show them who is now boss!)
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| holding his nose because he still hates the smell! |
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| MISSION ACCOMPLISHED! |
And just a couple of cute Coby and post OIT stuff.
Just tonight he informed me that he decided to use OIT as a user name for a computer program at school.
And on Sunday we went on a hike. We had planned on doing a simple one mile trek since the weather wasn't ideal... until we saw the name of the more strenuous hike.
PEANUT LEAP CASCADE!!!!
Sure it meant the one mile easy hike turned into a 2.5 mile strenuous hike up and down very steep and slippery steps on the edge of cliffs in a bit of rainy weather.... but with a name like 'peanut leap'--- it's not as if we had a real choice in the matter! ;)
And after we all survived that Hike (yep that's hike with a capital H- it was a doozy!!!), we rewarded ourselves with lunch in a new pizza restaurant--- and yep, you guessed it- we did not bother questioning them if it would be safe for Coby.
Because we don't have to anymore!!!!!
The proof is in the pudding. Even if that pudding 'may contain peanuts'. (okay snort)
The proof is in having witnessed Coby eat 12 peanuts every single day for the last several months.
Here's hoping tomorrow we find out that the proof is also in his falling IgE levels.
Good luck Cobester!!!!
You've come a long way baby!!!
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