I mean, I KNEW chances were more likely than not that he would have a reaction every now and again with dosing but it's still nerve-wracking when it happens.
It's just proof that while he is desensitized to his allergen, he is still very much allergic, and extenuating circumstances can at times tip his 'allergy bucket' and cause a reaction.
Just yesterday I commented to everybody that this was the very first November (other than when he was 3 months old) that he did not get sick with a something or other (past Novembers he's had streps, pneumonias, double ear infections, bronchitisses)--- so I actually have been treading this past month waiting for that other shoe to fall.
KABOOM..... (but we still made it through November illness free- so booya to that!!!)
Today we dosed him with peanut butter. He has been dosing with peanut butter every 3 weeks as per the doctor's instructions with no issues since graduating, BUT until today he's been PARTIALLY dosing with peanut butter. Today he FULLY dosed with peanut butter.
Until today the most peanut butter he had ever eaten was two teaspoons which is the equivalent of 10 peanuts (and then he ate two actual peanuts too to complete his dose).
Today he dosed with 2 and a half teaspoons of peanut butter and zero peanuts.
Right after dosing he said his lips were a bit itchy so we washed his lips with water and he said he was fine.
3 hours later we noticed he was scratching quite a lot... So we picked up his shirt....
We took pictures and sent them to the doctor and paged him.
The doctor told us to treat him with benadryl and the steroids and to watch him to make sure the reaction doesn't progress.
The doctor told us when a reaction happens it is usually for one of two reasons:
1. He may be getting sick but his body has not shown symptoms of the illness yet. (which wouldn't surprise me in the least since, until this year Coby had always gotten sick each November---- , so maybe it's coming...)
OR
2. Since this was the first time dosing FULLY with peanut butter his body just can't yet handle that form all at once.
If come tomorrow Coby does not develop a fever then we are to dose him fully with the 12 peanuts. If nothing happens and nothing continues to happen then tonight's reaction is probably due to the peanut butter form and next time we dose with pb- a month from now- we should possibly decrease the amount of peanut butter back down a bit (we'd call them back to verify this as that day comes closer)
If Coby does end up getting sick, then that is probably the cause of tonight's reaction and we are to call back on how to dose him with illness.
Meanwhile I have a headache, I'm grinding my teeth and am feeling stressed out.
I am trying to remind myself that he has been doing amazing.
He has been enjoying life.
Until today he had no real issues.
.... that we knew issues would crop up.
2 and a half teaspoons of peanut butter used to have the power to kill my child many times over--- and now it caused some hives.
It's okay.
We'll get through it.
We are still learning as we go through it.
But we will get through it.
All his continued hard work is so worth the many rewards it has already offered him.
Just yesterday a stranger reached out to me to let me know that her 9 year old was terrified to begin OIT. The doctor sent them the link to Coby's video and she told me while still nervous, her son is inspired by Coby's bravery and is set to start OIT in just 2 weeks. Despite graduating 4 months ago Coby is still inspiring others and changing lives. How cool is that!
I also noticed Coby's game name he calls himself when playing agario on the computer----
 |
| Too cute... |
We took him to see COCO (which has been Coby's main nick-name since birth too) and this was the first time ever we took him to the movies and did not have to wipe down the seat!
We were able to take him to a brand new restaurant even though this restaurant would have otherwise been unsafe for him pre-OIT. I mean, they even served peanut crusted chicken. Coby loved it! Well he loved his spaghetti and meatballs--- he tasted all 3 types of pie--- eclair, apple and pumpkin and hated them all--- but he was safe and free to try them and that is what counts...
When we were leaving the restaurant we noticed that the theatre's marquee was wishing everyone a Happy Thanksgiving--- Peanuts themed too!
And when we got home Coby composed a list of things he is thankful for...
He told me that "OIT is the biggest because it is most important." His doctor's name is even listed above 'family'.
So it's good.
It is good.
It has been going well.
Until today.
But even though he reacted, the reaction happened (hours) after dosing when I was home to handle it. It did not happen when at school or randomly when out and about. It was self contained in the form of hives and did not spread. It did not happen because some moron wanted to test him to see if he was truly allergic...
I write that last sentence because just tonight I read an article about a grandmother who did not believe her grandchild was truly allergic so she had been baking cookies laced with her grand-daughter's allergen for the past year waiting for the moment she could sneak it to her 3 year old grand-daughter.
Yes, you read that right...
Let's just say the grandmother has been proven wrong. The grand-daughter is lucky to be alive. And that grandmother will never be seeing her grand child again. If you wish to read the full story about this nut-job (no pun intended) here's the link---
http://www.suggest.com/lifestyle/1725211/crazy-mother-in-law-tried-to-kill-her-granddaughter-by-feeding-her-a-laced-cookie?utm_campaign=sug-fbk-m-us-412d82aa&utm_content=1050&utm_source=fbk&utm_term=sug-fbk-m-us-412d82aa.i59wsogh
So anyway....
Here we are.
Me listening through the baby monitor and running fifteen minute checks to inspect my kid.
It's gonna be one of those nights.
Inhale.
Exhale.
Oh.... almost forgot--- we got Coby's first post OIT tests back. Some were amazing. Some were not. Some were to be expected.
Some were not.
By 'some were not'- I mean HE DID AMAZING ON HIS SKIN TEST. He did sooooo much better than the doctors thought he'd do at his very first post OIT skin test. I posted pictures in my last blog entry, but I did not know the exact measurements until the doctor sent them.
On his first skin test before beginning OIT at the ONE PERCENT level his reaction measured 12 x 24.
On this skin test at the ONE HUNDRED PERCENT level his reaction measured 7 x 12.
WHOA!!!!
And the doctors say skin test matters more than the blood test.
And his, while still positive, have fallen drastically!!!!!
Blood work--- wasn't as good.
The two numbers that are most closely associated with risk of anaphylactic reaction INCREASED a bit- going from 33 & 35 up to 41 & 42.
But the doctors actually warned me that it's normal to see an increase before the numbers begin to fall. I wasn't happy to see the increase, but I was comforted in being told it was normal to see that.
His total peanut IGE numbers did actually decrease from 88 down to 64.9
So on a whole---- WOW! In early February he will be re-tested to see where his numbers stand then.
In the meantime- we hit a little bit of a bump.
No one promised us a 100% smooth ride--- in fact they said be prepared for those occasional bumps.
So after 4 months we hit a bit of a bump.
No one promised us it would always be easy.
And we're still learning how to navigate this road.
We got bumped and the coming days will hopefully explain why.
Learning as we go.
But my G-d, how far we have come!
But still.
Inhale.
Exhale.
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