You may feel as if a snake is squeezing you tighter and tighter. Every now and then he loosens his grip so you can breathe, but then wraps himself right back up again.
This OIT thing is intense. You have to be on constant alert. Your muscles are tense. You are stressed. You are exhausted. You are watching. You are waiting. You are wondering. You are hoping. At times it's hard to take a full breath. But you just keep on going.
Last Thursday was the first time, since the reaction he had before Pesach, that I was able to mostly sleep through a night, and get about a 5 hours stretch. It was a nice little tease of what that 5 hour stretch felt like. But then yesterday happened and the chance of a 5 hour stretch in the near future was snatched away. Here we go again...
Looking back at yesterday's appointment, of course now I can see the 'signs', (though anyone can look back at anything and re-interpret it as how they see fit):
*Before dosing she made sure Coby had carbed up before coming. Yes, he had a bagel and cream cheese, as usual for Thursdays, but why is she asking me? She never asked me before. Did she realize it was going to be harder than usual?
*That initial mark underneath his eye.
Is that Coby's 'tell'? The mark underneath his eye? His big anaphylactic reaction (and I give the adjective big to it because it's possible that he had another anaphylactic reaction a few weeks ago, but it was very different than his first, so I differentiate the two though I know all anaphylaxis is bad...) began with one mark underneath his eye.... but that time it progressed within minutes.
Yesterday it had faded by the end of the hour.
*Me continually picking up his shirt towards the end of the hour to examine his skin and make sure it's clear. (I don't usually do that at the doctor's.)
*Him having slightly flushed cheeks at the end. (But that sometimes happens.)
* Doctor saying, "I've noticed at times he gets slightly flushed cheeks and that tends to be his thing- but if you feel more comfortable you can stay another 15 minutes to watch him but he is clear to go."
I decided NOT to stay the 15 minutes because in the back of my mind I was thinking, 'his reaction will be delayed anyway so staying 15 minutes will do absolutely nothing.'
* The doctor gave me this week's journal and I noticed that for yesterday's date she put in the date, the time, the dosage (like she usually does)- but she did NOT put a zero with a line through it as she normally does, which indicates no reaction.
She left it blank.
An oversight?
A foreshadowing? (Needless to say I filled it in later.)
*He was tired---- (but sometimes he is tired after up-dosing.)
* He lay down on the couch for hours---- (okay that he usually does not do.)
*For some reason yesterday I kept picking up his shirt at home to make sure nothing was happening on his skin. I don't usually do that either.
So another hour went by and it was bed-time. Yitz took him upstairs to put his cream on him and he called me upstairs, "Stacey, we have a problem."
And I literally called back, "No we don't. Stop it. Don't tell me. I don't want to hear it. We don't have a problem." Yeah I suck.
Yitz brought him downstairs and holy crap- are you kidding me?! It was four hours past dose and I had been checking him all night because of that 'feeling' and I hadn't seen anything until that moment...
It is hard to get a good picture but it was all over him, some smaller, some larger, for sure hives (but not the hives to the degree of his big anaphylactic reaction)--- on his back, his sides, his belly, his legs, his inner thighs.
ARE YOU BLEEPING KIDDING ME?
He had a bunch of scratch marks too. Coby never once complained to us that he was itchy---- argh! While it is great to have a non-complainer- and a happy go kid, we NEED to know what is going on with him. We keep telling him that he needs to TELL us when something is happening but he always insists that he is fine. When we asked him yesterday why he didn't tell us he was itchy, he replied he was not itchy. We then showed him all the bright red scratch marks (not pictured here) and he gasped and said, "I AM HIDEOUS!" My poor baby.
Yitz got on the phone to page the doctor and told me to email the several pictures of the hives to the office since last time that is what they had me do as soon as we paged someone. Last time as soon as Yitz was on the phone they were able to access the pictures. So this time I simply attached a bunch of pictures and titled it "Coby Finkelstein 4 hours past up-dose" and wrote nothing else.
And yeah, the doctor couldn't access the pictures at that time. I was so worried I'd look like a moron when the nurses opened the e mail in the morning!
(So this morning when our PA Jessi who handles Coby's up-doses (who we did NOT speak to last night since it was Dr. Selter who was on call) innocently opened up the e mail and saw all the pictures with no other explanation was waiting she freaked out and called us right away. "OH MY G-D. HOW IS HE? DID YOU CALL US WHEN THIS HAPPENED?!)
So anyway last night we had Dr. Selter on the line and he said the "R" word, "He is having a reaction."
I mean I knew that. But labels are strong. I wanted it to be a 'symptom' or a 'side effect'. Not a 'REACTION'.
Doctor continued, "I'm hopeful it will not become explosive."
I ignored the word hopeful and focused on his choice of word- 'explosive'.
"EXPLOSIVE" is terrifying!
He told us that since we now know Coby tends to have reactions/symptoms/side effects in his treatment, he's comfortable in not having us immediately epi him. "BUT YOU NEED TO BEGIN TREATING THE REACTION."
He told us to give him Benadryl and Steroid. (His doctor had prescribed steroid a few weeks ago for situations like this, so we had it in the house sitting on the shelf just waiting...)
At that point I grabbed the phone from Yitz and was basically saying, 'no no no. Not benadryl. Benadryl can mask anaphylaxis. Not benadryl. Natalie had benadryl and she's gone now.'
(Refresher- Natalie was a 13 year old girl with peanut allergy. Never had a reaction before. At a family camp she took a bite of a rice krispie treat and realized it was peanut butter and spit it out and told her dad- a doctor, that she ate peanut but spit it out. She said she felt fine. Her dad gave her benadryl. 20 minutes later she didn't feel fine. Her dad gave her one epipen. Didn't work. Two epipens. Didn't work. The dad then shattered glass with his bare hand to get access to another epipen- and ended up needing hand surgery--- didn't work. She died. There's speculation that benadryl could have masked anaphylaxis until it was too late.)
Doctor sort of talked me down, (but I'm still convinced benadryl is evil) and convinced me to give Coby his benadryl and steroid.
He told us that if the night otherwise went well and we didn't end up in the hospital to call him in the morning to figure out how to dose today.
Obviously we put Coby to sleep in my bed so I can keep a close watch. We plugged in the monitor to listen for him until I would go back upstairs to bed to try to sleep.
Over the next hour and a half I kept running upstairs and checking his skin. I was pleased to see the hives were fading away.
When I was ready to go to bed I checked one last time. And CRAP!
I was POSITIVE that meant the steroids and benadryl weren't enough. I really thought, "THIS IS IT. THIS IS THE MOMENT WHERE WE WILL HAVE TO EPI HIM AND GET TO THE HOSPITAL."
It was then midnight and over 7 hours past dose when we paged the doctor. Again. I even said to Yitz, "Find out if it's okay if we just drive him to the hospital ourselves or if we need to call an ambulance."
Shockingly the doctor told us that Coby is STILL okay. "It is not uncommon for hives to come and go- as long as that's the only thing happening, he's okay."
Seriously?
Um, okay. Good to know.
Earlier that night I had been posting on the OIT board about Coby and many people chimed in that while it is not too common, there are those who when first trying peanut butter, since it is very concentrated, can have a bad reaction. Some even said their office doesn't even introduce peanut butter until maintenance. Another person said that 2 months into maintenance their child had an anaphylactic reaction to trying peanut butter.
And then I began wondering.... wait a second. Each time we switched peanut form we DOWN-DOSED.
When we went from liquid to powder, we down-dosed to make sure he could handle that form.
When we went from powder to peanut, we down-dosed to make sure he could handle that form.
And now here we are trying peanut butter and not only didn't we down-dose, not only didn't we same-dose... we actually UP-DOSED.... Could THAT have been the reason this happened?
Thoughts to ponder...
So I attempted sleep. Rolling over every few minutes to feel for his breath and make sure he was really okay. At about 3 in the morning Coby got up and said that his pajama pants were soaked. He told me he didn't pee and he didn't know what it was. I got him new pjs and underwear and wondered WHAT IS THAT? It didn't smell like pee. Our room wasn't hot. I guess he was sweating through things as a side effect from all the meds. I don't know. He was also very thirsty.
He drank water and went back to sleep for the rest of the night.
In the morning the hives were basically gone and he was his happy self bouncing around.
When we spoke to the doctor today, they asked us if Coby had been running around/exercising too soon after dosing and perhaps that caused his reaction. We told them all he was doing the entire night was lying on the couch. For hours!
They told us that today they wanted us to down-dose Coby a bit. Last week was 2 peanuts. Yesterday we attempted 3 peanuts. They want him eating 2.5 peanuts and we will see what happens.
They said we can eat:
-2.5 peanuts
or
-4 peanut m & ms
or
-the equivalent in peanut butter. (5/8ths a teaspoon)
PEANUT BUTTER?!
AGAIN?!
They told us that not once, in their practice, did they ever experience a person having a reaction due to switching to the form of peanut butter. They said they've read about it on OIT boards by patients at other practices but they never actually witnessed that happen. For now they believe he reacted due to the up-dose itself.
If Coby tolerates the equivalent of 2.5 peanuts for the next several days, we should call them on Tuesday and they may allow us to up-dose back to 3 peanuts at home (since there is no appointment anyway this week due to Shavuos.) If there is a problem before then we page them to figure stuff out.
Okay.
Okay.
A plan.
Sort of.
Do I try peanut butter again at the lower dose? (BUT STILL MORE THAN LAST WEEK'S)
I was trying to sort all of this out in my head, but then Coby decided to throw another curve-ball at me. Seemingly out of the blue he said, ""I DON'T WANT TO DOSE WITH PEANUT BUTTER EVERY DAY BECAUSE IT WAS HOT AND IT BURNED MY THROAT."
WHAT?!
"Hot"?!
"Burned my throat?!"
THOSE ARE REACTIONS.
So we called the doctor back yet again to share this new information.
The doctor asked to speak to Coby to ask exactly what it felt like and how long it felt like that.
Coby practically rolled his eyes and exclaimed, "DUH. IT BURNED. BECAUSE HOT THINGS BURN!"
Uh, it wasn't hot....
She said that it is possible the peanut butter got stuck in his throat and his throat was having a slight reaction to the peanut proteins- but as long as it goes away fast and doesn't stick around for several minutes, that's okay (ish).
Coby told her it didn't last too long and went away really quickly.
BUT I DON'T KNOW HOW LONG IT STUCK AROUND- BECAUSE I WASN'T AWARE OF THAT HAPPENING! Today, Coby may insist it was just a little bit of time and not much, but who knows what actually happened in the moment(s)?
She said it is still okay to go ahead and dose with the peanut butter though now she is left wondering as well.
She said, "Perhaps with Coby, it is the form peanut butter that is affecting him."
*After all they did have to change their day 1 routine for Coby and start at a much much lower level. (Some people start at 1/1,000th- we were at less than 1/1,200,000.)
*They also changed how they conducted the skin test on him. They gave Coby 1/100th the amount they usually do and were shocked at how much it blew up despite that and ended up needing to give him benadryl and steroids then too.
*With switching form of peanut they did it differently. While most people 'sideways dose' and have the same amount as they had the week prior but in different form, they down-dosed Coby each time when they switched form (besides this time).
*They added a few steps to treatment in order to have him increase more slowly.
Coby is more of a challenge. Perhaps Coby is indeed their very first patient to ever have a this happen at their practice.
We'll probably dose him a bit earlier today when cortisone levels are higher than later on. And if we do dose with peanut butter (gulp) we will make sure he drinks more than just the one cup of water he usually does to wash it down.
But oh my G-d---- that snake has got a really good grip on me over the last day or so. It seems like every time it loosens its grip so I can take a breath, it tightens itself right back up.
Today on 'ON THIS DAY" facebook memories, this picture appeared on my page:
And I thought that picture to be very appropriate for today eight years later. There my little Coby is, just hanging out. Seemingly trapped but chill and happy and just hanging in there.
And that is what we'll be doing.
A bit trapped. Pasting that smile on. And hanging in there.
WE ARE NOT GIVING UP!
I mean we got so far already:
- We are now in month 8 of treatment. 219 days. We've already overcome so many hurdles. Month one of down-dose after down-dose. Other reactions. Illnesses.
-He had a hives reaction before... we had to slow down, but we didn't stop. And eventually we got back up and now we are way past that!
- He started at less than 1 millionth of a peanut on day one and last week he was successfully eating two full peanuts. Over two millions times his starting dose!
- He is PAST the point that nearly killed him years ago.
-He is probably at the 'bite proof' stage now, where one wrong bite can no longer kill so easily.
How can we give all that up?
We cannot...
We came so far.
We are soooo close.
I was just starting to see that light at the end of the tunnel.
He has had 24 appointments with FORTY SIX up-doses (and some down-doses) since beginning. (this number includes the several up-doses on day one of rapid desensitization as well as the down doses followed by up-doses we dealt with as well throughout the months) And he is just seven (8?) more up-doses away from graduation.
We cannot give up on the marathon on these last few miles. We are exhausted. We are spent. We just got to dig deep and pull it out to get to that finish line.
I mean we may just be one (2 now?) up-dose away from starting to get some clearance in eating other items. Coby is literally drooling at the idea of having ENTENMANN'S no longer being on the 'assur' list. I can't take that away from him.
Freedom has already began.
Hurdles overcome.
Safety being achieved.
So yeah it is terrifying.
It is frightening.
It is crushing at times.
But it is also life saving.
Life promising.
Life changing.
And so on-wards through this current storm we will walk. A bit worse for the wear but not out of the game. And definitely not giving up.
Nope.
Not ever going to give up.
Those words are not in my vocabulary.
And IYH soon I will be able to say we got past this storm as well....
After all, the best views come from those hardest climbs.
EDIT--- we figured out how to dose him. Today we will give him the 'simple' down-dose of 2.5 actual peanuts. As long as he tolerates it we can figure he CAN tolerate 2.5 peanuts. Tomorrow we try the equivalent in peanut butter. If he then has a problem with peanut butter we can speculate the problem is the form and NOT the amount. If both go smoothly and they let us updose to 3 on Tuesday. Again we start with 3 peanuts (or 5 peanut m and ms) and if that goes smoothly, THEN we'll try the peanut butter.
I think that sounds like a solid plan. Hoping it works!
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