Saturday, January 20, 2018

WAS SUPPOSED TO BE A BORING BLOG POST

Just a couple of days ago I was thinking I should post a quick update.
About how boring it's been. How wonderful it's been.
No issues at all.
Enjoying freedom.
Ate dinner at someone's house without looking into anything.
Ate junk at a school party with no worries.
Went to his cousin's wedding and was able to eat whatever he wanted without us having to talk to the caterer!   


Went on his first playdate at someone else's house EVER (and it was even a sleepover) with no worries.


But then Thursday happened.
It was time to try peanut butter again.
Ever since his reaction nearly six weeks ago we had dropped the dose back down to 2 tsp and had no problems.... until Thursday. (though I must admit I am second guessing myself--- what if all the other times he simply didn't complain so I didn't bother checking him- and maybe he was reacting but I was stupidly clueless--- argh, hand to forehead... from now on I need to check him whenever he has peanut butter....then again Yitz always smears Coby's cream on him at bedtime, so Yitz would have felt hives if he was having a reaction... argh)

Usually we do our peanut buttering on Saturdays... but something told me to do it earlier than then. I told myself if Coby reacted Saturday we may have a problem getting on a plane early the next morning. I also didn't want to dose him Friday because I worried if we had a problem and had to page the doctor we'd be using a phone on shabbos, so Thursday it was....

He dosed.
Minutes after dosing he complained that his inner upper lip felt all swollen.
That was a strange comment.
He never ever said anything like that before.
Yet it wasn't visible to anybody.
He insisted inside his mouth it felt all swollen.
We rinsed him with more water and a few moments later he said it was much better.
He didn't complain again.

Just before he was going to go to bed (nearly 5 hours post dosing), I called up to Yitz, "You know what? Check his body before you put him down. That initial comment he made still concerns me."

Moments later--- "Stacey, we have a problem." 
 



















CRAP. He was covered in hives.

We paged the doctor who instructed us to start off just dosing him with benadryl and if there is no change we should add the steroids and keep watch.

The doctor said for whatever reason there is something in the peanut butter that Coby's body cannot handle; that he is not getting coverage from by dosing with regular peanuts.

He also said that there have been studies that showed that if some people try to switch dosing even between raw peanut and roasted peanuts they also have issues.
We purposely had only been dosing Coby with the ROASTED peanuts because they are the most highly allergenic ones. We wanted to make sure that we were desensitizing him to the worst of the allergen.
And so we did thinking we were completely covering him.

But this peanut butter. 
ARGH!

I don't really get this peanut butter problem. I mean, the kid passed his 24 (roasted!!!) peanut challenge which allows him to free eat--- yet peanut butter equivalent to just 10 peanuts can cause him problems? I don't really get it.

There are many theories out there as to why peanut butter can be problematic to some including:
-Peanut butter gets absorbed a lot quicker than peanuts and it hits the system too fast
-That peanut butter is very sticky and perhaps it is coating the esophagus and staying there instead of dissolving like regular peanuts.

But really nobody KNOWS for certain why it is.

Dr. Selter said we have to come up with a new plan. He thinks we will have to start acclimating Coby's body to peanut butter by having him dose with it a lot more frequently and starting at a much lower level.
We told him we are about to go to Disney and really do not want to deal with this risk there and the doctor agreed to only dose him with his 12 peanuts while there, and to call him when we get back so he can formulate a plan for Coby.

Coby actually also has his second post OIT skin and blood testing the week we get back as well.

(Some people have suggested to ask if we can try PB2 powder instead of actual peanut butter. It may cover the necessity of needing to do peanut butter without being so sticky. We will have to look into that as well.)

Needless to say, Coby slept in my bed all night long. And like a mom of a newborn I kept putting my hand on his chest every few minutes to make sure he was still breathing. By morning the hives were basically all gone, thank G-d. It was another difficult night. This OIT thing can be so nerve-wracking at times.... but so very worth it! 

TOMORROW Coby may be getting his long awaited for ghiradelli milk-shake that was promised to him once he finished OIT. He is soooo excited and I cannot wait for him to get that long awaited for reward.

Ghiradelli in Disneyworld...

We are actually flying SOUTHWEST for the first time. He no longer is stuck to JETBLUE!!!! Though I must admit we still had them note his peanut allergy on his ticket, after all he does still have the allergy, and probably always will. And if we want to preboard (um, yes please), they will allow us to do so.

But what amazing newfound freedom that I no longer have to be a freaking nervous mess about him having a reaction 30,000 feet up to something somebody else is eating!!! (we were instructed to make sure Coby does NOT ever dose and eat actual peanuts up there just in case... but not having to worry about a touch or airborne reaction is so freeing.)

Of course I am still nearly hyperventilating with the idea that in just 12 hours time I need to step foot on that airplane... but it's nice to know that now it is only my own fear about planes and no longer the fear of my son having a life-threatening reaction up in the clouds.

Breathe in.
Breathe out.

Ghiradelli here he comes!!!!!









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