Okay fine, the first pic is simply from Wacky Wednesday and the second pic was a few days later for the 100th day of school.... but I am telling you, while most of me feels like that eternal 12 year old, some days it feels like this whole allergy & OIT thing is aging me big-time.
We had a pretty nice run. Since stopping the powder over two months ago, Coby only had 2 or 3 reactions- just of hives; some of which didn't even require steroids to control them- just benadryl.
And then last night happened.
In the above picture I am holding the adrenaclick (epinephrine) already taken out of the case with both caps already removed and had been about to jab it into Coby's thigh when the doctor called back...
But first let me backtrack a few weeks. We had gone back to the doctor to discuss what had been happening with all the reactions that seemed to come mostly from the powder. 11 reactions of hives in under 2 months and 2 anaphylactic reactions within 4 months. All the above reactions resulted from powder, and we even 'understood' one of his anaphylactic reactions.
So last month the doctor sent Coby for more blood tests to rule out anything new having cropped up. I took Coby for his blood test and they needed fo fill A LOT of vials.
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| Ready for my blood test |
It was hard to get a vein and then the vein in his first arm gave out. They went for the second arm, but that vein petered out too and they couldn't get enough to fill up all the vials and told us we'd have to come back the following week to get the rest.
My poor boy--- I decided to treat him to Hagen Dazs after that ordeal. After all he OITd and was free to do so.
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| Hagen Dazs |
We went back the following week for 'take two'.
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| Here we go again... |
The test results showed that no new allergies cropped up---- pheeew. He was a bit vitamin D deficient so we were told to add a vitamin D pill each day to his regimen.
They also said something was 'off' with his thyroid.
I was so excited!!!!
Yep--- you read that right--- EXCITED!
Because the allergist told me that all his reactions WOULD be able to be attributed to hypothyroidism
I was so hopeful that we get Coby on some meds and the reactions would stop.
But unfortunately Coby's number was near a '6' and the endocrinologist said it needs to be a '10' in order to be treated.
DAMMIT!!!
Our allergist said we will keep watch on those numbers because something was happening with his thyroid and maybe this was just the beginning.
He also had another skin test to check on the peanut allergy.
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| More improvement!! |
While the blood test did not show a reduction in the Ige numbers, the skin test did and doctors say that the skin testing is more reliable than the blood testing.
While the 'hive' in the skin test is similar in size to his test 6 months ago the redness around it has gotten smaller which meant improvement.
It was so wonderful to see that because his initial skin test before OIT showed such a significant reaction to just 1 percent of the full dose that they had to stop the test and treat him. The above test is such a drastic change and that is to 100% of the testing dose!
In other news Coby's OIT video and blog continue to travel the country and in some instances the world and he continues to inspire others.
One person reached out to us and asked if Coby would be willing to facetime with her. She and her family had followed his blog and watched his video several times and said Coby was a celebrity in their household. The dad admitted to getting choked up upon watching his video. Awwww. Coby had helped inspire them to begin OIT and they wondered if they could ask him some questions since she would be starting OIT that week. They were so excited to 'meet' Coby.
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| face-timing with Sophie |
Coby also went to another slumber party- another gift that OIT had given him. Another normal childhood moment gifted to us by OIT.
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| heading into the sleepover party |
So other than a few small glitches, we were on a roll. We were super excited for Purim---
- where once again he'd be able to go to parties with no worries of what he was eating--- which he did.
-we'd be able to visit family for the seuda with no worries- which he did.
- And he would be able to eat anything and everything that came in shalach manot which he has been.
Purim the holiday that used to be the most dreaded had become the one most anticipated!
Thank you OIT!!!
Erev Purim rolled around & we decided to skip dosing Coby that day.
Last Erev Purim- he ended up having a delayed reaction 4 and a half hours after dosing- after dancing during the chagigah post megillah reading. So this year we decided why get stressed out? Let the kid have an awesome time- wear his costume, eat whatever he wanted at shul and dance his little heart out with no worries of reaction.
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| ANIMAL! |
He had so much fun. The following day we were able to go to Brooklyn, visit family, partake in their seudah and look through all our shalach manot with Coby super psyched about all the things he otherwise wouldn't be able to have had pre-OIT.
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| This is only SOME of the items he wouldn't have been able to have pre OIT |
We got home later than we had anticipated and were dosing him much later than we usually do. Since cortisol levels rise during the day and the later you dose the higher the chance of a reaction, and he hadn't dosed at all the day before, we decided to just give him 6 peanuts that eve. I was worried- but thank G-d we had no problem.
Then came yesterday.
He dosed the full 8 peanuts.
An hour later he started coughing.
"Mom I can't stop coughing."
Cough, cough, cough.
"Mom I need medicine."
I looked over at him and noticed his cheeks were beet red as well as one of his ears.
That red ear always signified the start of a reaction...
His tell...
There wasn't a single hive on his body, so I opted to give him steroids first.
He continued to cough.
And clear his throat.
I gave him an entire cup of water and insisted he drink.
My heart had begun to pound.
My hands had started to shake.
He continued to cough.
And clear his throat.
I ran downstairs and interrupted Yitz who was in the middle of an important work conference call.
"Yitz he's having a reaction. Could be anaphylactic."
Yitz cut the call short, "I have to go. My son is having an allergic reaction. We'll continue Monday."
He ran upstairs as Coby continued to cough and then exclaimed he was getting all itchy.
We pulled up his shirt but still no hives. This is the one thing that completely threw us. There were no hives despite him being itchy.--- that never had happened before. He had always had hives! (but we all know each reaction can be different.)
Yitz ran upstairs to get benadryl and while I gave it to Coby, Yitz paged the doctor.
Then Coby said, "My stomach hurts."
Then he started burping over & over again.
And continued to cough.
Then his nose started to run, "I'm stuffy. And my throat feels a little tight."
I told Yitz that we have to epi him--- it involved his throat AND other systems. This for sure was anaphylaxis. Multi system reaction...
Mikey who had been about to leave to someone else's house for shabbos began filling a hospital bag for us while I pulled the epipen out of its belt, dumped it out of its case, pulled off the two blue ends and got ready to administer it.
"Will it hurt?" he asked.
"Same as last time hun- you got this" I responded.
I inched towards him to 'jab' him as I instructed Yitz to call the ambulance- when our phone rang.
It was the doctor calling back.
Just as I was about to jab him I paused. Yitz quickly explained the situation as the epi hung there mid air ready to go.
The doctor told him to give him another teaspoon of benadryl.
We quickly gave it to him.
Within moments his coughing subsided. He stopped clearing his throat. His nose stopped running.
The doctor told us to watch him and if in the next few minutes it started up again to epi him and get him to the hospital.
She gave us her cell phone number so we could contact her directly.
I was still gripping the adrenaclick and took the above posted picture.
Fifteen minutes went by and Coby continued to improve.
We spoke to the doctor again worried about a biphasic reaction (a reaction that can return a few hours after the initial reaction and be even more serious than the initial one) and she instructed us to re-medicate him in 3 hours, keep watch and to lower his dose to 6 peanuts for the rest of the weekend until we spoke to his main doctor on Monday.
We dragged Coby's mattress into our room and he slept right next to our bed. Throughout the night I kept placing my hand on him to make sure his chest was rising.
What can I say?
I was still terrified.
I could not help but think about Natalie.
Natalie.
That's our code word.
Natalie.
Coby does not know what it means. Yitz and I do.
Throughout this reaction I kept saying to Yitz, "What about Natalie? What about Natalie?"
Quick reminder- Natalie was the 13 year old girl who had a peanut allergy but never had a reaction. At a party she bit into the wrong thing, realized it had peanut and spit it out. She felt fine but her parents gave her benadryl just in case. 20 minutes later the reaction became full blown- they epiid her three times, but she died. The benadryl had masked the symptoms and her body went past the point where an epi could help save her.
How could we have not epiid him once it was multi system and he was coughing non stop? If the doctor had not called back at that exact moment I would have- I was two seconds away from having done so.
Yitz said, "He's okay".
"But what if??? G-d forbid. There is no going back. There are no second chances. Natalie...."
I don't get it.
It was a multi system reaction yet that one extra teaspoon of benadryl (which made it a total of 3 tsp benadryl & 2 tsp steroids) somehow got it done?
Any regular allergy plan has someone using the epi as soon as throat is affected. How does OIT buy us a few more moments? Does it really?
Most people who complete OIT have zero issues.
Coby is not one of them.
And again I think back to all those fun times he's had throughout the year and a half since completing OIT and how much safer he is in that real world and how he no longer has to live in his protective bubble.
But then one night like last night seems to unravel it all for me.
The two pictures I posted above were taken less than 24 hours apart. I will post them one more time here- just for comparison sake. The absolute highs of OIT and the lowest of lows.
Sometimes it's just so hard to make sense of it all and it makes me feel like I'm 100 years old.
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