GULP.
I must have been feeling quite stressed both about Coby's world as well as the world we live in as because that night I dreamed we were in a huge hotel and there was an explosion in the hotel and 1,500 people were killed. Everyone was running around trying to find their family members. I didn't know where mine was. Finally I saw Josh coming down the steps and I felt so relieved but I was soon running around frantic- where is Yitz? Mikey? Coby? And I woke up. 6:30AM with a horrible migraine.
Waking up with a migraine is no joke. With me, when a migraine comes on during the day I get an aura that precedes it. An aura means I lose peripheral vision and I get spots in one eye. One side of my body goes numb from the tips of my finger, up my arm, neck, chin, nose, tongue and cheek. It's a little disconcerting, but at least I have the heads up to start medicating and fighting the migraine that would soon be upon me. Usually I'm able to keep the worst part of the migraine at bay and only end up with a regular bad headache. However, when you are already waking up with one, it means your head is pounding, you can't tolerate light, you are nauseaus, your legs are rubbery and all you can do is hold the wall to get to the bathroom to keep vomiting. Medicine can't fight it as easily once it's already upon you.
So I was in bed feeling like crap until 4PM.... just in time to dose Coby with the peanut butter...
...but let me back-track a little bit.
A day earlier my mom had planted a seed. She asked, "When Coby tried that peanut butter at the doctor's are you SURE he didn't end up touching the peanut butter?"
At first I brushed her off saying that the peanut butter was on a graham cracker. He was holding the sides of the graham cracker. He didn't touch the peanut butter. Besides even if he did, then wouldn't the hives appear on his hand, how would it have gotten all over the rest of his body?
But as I lay in bed trying to fight off the migraine my wheels were turning...
Wait a second...
When Coby had asked if he's allowed to touch the peanut m & m (since he is not yet allowed to touch peanut), Jessi had told him it's okay if he touches it but to be careful not to rub his eye. Even though the peanut is covered by chocolate and candy, if he were to rub his eye it's possible some peanut residue would get into his eye, go directly into his blood stream and be absorbed way too quickly and THAT could cause a reaction.
Hmmmmm
Yes Coby wasn't directly dipping his finger in the pb... but he was eating a cookie. Cookies crumble. As the cookie got smaller and smaller, Coby's finger MUST have touched a teeny bit of peanut butter.
How could it not?
Oh my gosh---- and wait a second!
Coby WAS vigorously rubbing at his right eye for a good 15 minutes during the appointment.
Is it possible?
Did Coby touch peanut butter and by vigorously rubbing his eye---- did it get absorbed directly into his blood stream?
Was THAT what caused his reaction?
Though that doesn't 100% explain away his burning throat--- that throat reaction must still have been due to its stickiness and not being washed down with enough water.
And that doesn't explain a 4 hour delayed reaction....
But could THAT have been the main cause?
Detective work at its finest...
If it was due to touch, it is scary that a teeny possible touch can cause hives all over the place this far into the process, but WAS his reaction, in fact, due to blood absorption through the eye and NOT due to the peanut butter form or to the up-dose itself?
Just in case that theory was correct, we decided to not have Coby touch his graham cracker when dosing with peanut butter. Instead we had been feeding it to him. When he tried the chocolate form, he absolutely HATED the taste of the chocolate peanut butter and it took him 15 minutes to down the tiny bit. He also drank a whole lot of water to make sure it got washed down real well. Yitz and I also kept wiping his hands and face with a baby wipe to make sure absolutely no residue remained...
...AND NOTHING!
NO REACTION!
HE DID IT!!!!!
ATTA BOY!!!!
I get knocked down, but I get up again...
He continued to dose all the way through yesterday with no problems! He did chocolate peanut butter, honey peanut butter, peanuts and peanut m & ms. He is still not a fan of the m&ms and decided to try them by holding his ears instead of his nose to see if that helped with the taste... and he says it worked better than when he held his nose. :)
 |
| Holding his ears real tight so as not to taste the m&m as much. Um. Ok |
So after trying most forms of peanut at the 2.5 level with no problems, we were POSITIVE the doctor would allow us to up-dose at home today, back to his original dose of 3 peanuts; after all- he HAD told us that if all goes smoothly at the 2.5 level they probably would allow us to go back up to 3 tonight
And it all HAD gone smoothly!
But when we called the doctor today, the doctor said that he had thought about it and he had seen the pictures of Coby's hives, and decided that Coby's reaction was far too significant for them to allow us to try to go back up to 3 at home.
Sigh.
We are so bummed.
The doctor still does not know why Coby has such delayed reactions. And when we gave the touch/rub eye theory to him, he said it was possible... but if that were the case they would expect to see a localized reaction around the eye which just wasn't there. (The red mark that appeared beneath Coby's eye while we were at the appointment was NOT the eye Coby had been rubbing at vigorously.)
They said while it is an interesting theory and it is possible it did get in through the blood-stream and cause the reaction, they aren't convinced that that was the cause of his reaction since it doesn't follow the 'rules' of what they would usually expect to happen. Though we all know by now, Coby does not follow the 'textbook rules' in any of this.
So if his reaction wasn't from touch then it was either due to form, (with Coby being the first patient they ever saw that happen to- but again as mentioned Coby does not follow those textbook rules)---- or it was due to the up-dose amount itself.
Sigh.
I don't know...
What I do know is that from now on, at each up-dose, we are going to have Coby eat actual peanuts. That is it.
Not reese's pieces, not peanut m & ms, and certainly not peanut butter.
Just the actual amount of peanuts. That way we will know if he tolerates the amount of the up-dose. And on another day, at home, we will do the equivalent in peanut butter form to make sure he can also tolerate the form of peanut butter at that higher level. I am NOT going to try an up-dose again using peanut butter from the get-go. We had to try peanut butter once at the office, but now we have clearance to do the right amounts at home as well. We are also not going to allow Coby to touch the peanut butter.
How much longer will he be unable to touch his allergen? I do not know. Hopefully he'll be able to once graduation day comes.
And I hope that when graduation day comes we no longer will have to worry about all of this. Hopefully his body will be used to every form at any amount.
Graduation day. ...
Sigh.
Pushed off yet again.....
They said that if all goes well until next Thursday, they will attempt to up-dose him then a full peanut to 3.5 peanuts---- but that still means we lost yet another week. (Now he would do 3.5 next week then 4.5, 5.5, 6.5, 7.5, 8.5, 10, 12)--- originally next week was going to be 4, then 5, 6, 7, 8, 10, 12)
What a let down.
I know, I know slow and steady.... BUT Coby had been on track to graduate ON his hebrew birthday (July 20th), with the 24 peanut challenge a month later.
How cool would that have been?
And now the best case scenario is Coby graduating on July 27th, two days shy of his English birthday; and he really wants that ice cream cake on his birthday....
Many kids are able to graduate in just 4-6 months. We are on now in month eight with a minimum of another two months before the food challenge. When Coby began OIT they set him up with 6 months of appointments, hopeful he'd be done within six months.
A while ago we had added on another month of appointments...
Then we added on another two months of appointments...
As of now, his very last appointment they have him scheduled for (besides the food challenge) is July 27th.
Are we going to once again have to have them add on even more weeks?
At times this journey can be sooooo frustrating.
We were so hopeful that next Thursday he was going to start being cleared to eat certain foods, but that is now being pushed off at least another week AND the doctors are now contacting DUKE in Texas (the pioneers of OIT) to make sure it's okay to give him any clearance at all before graduation. Other people get some clearance at three.
And us?
Anything?
I feel like a huge prize was being held just out of reach from him and just as they were about to hand it over--- they snatched it back.
I know, I know- eye on the goal. Safety is paramount. Slow and steady. But sometimes it just sucks.
___________________
And just for a little side note, we are currently exploring the possibility of doing SLIT with Coby as well. SLIT is sublingual immunotherapy. It is similar to OIT except we would be doing it for environmental allergies. Each week they place a small amount under your tongue and it dissolves and you build up your immunity to the environment that way.
That would certainly help alleviate one of my maintenance worries.
Having bad environmental allergies together with dosing can at times be enough to 'tip that allergy bucket' and cause a bad reaction.
I am currently too scared to allow Coby to spend much time outside.
Whenever he comes home from school, we wash all his clothes including his jacket and he showers before dosing.
On Thursdays he isn't allowed to play outside at recess since he wouldn't have time to shower the pollen out of his hair etc. and it's too risky to up-dose with his environmental allergies still on him/in him.
Every few days we read the pollen weather report when trying to figure out that week's activities.
It's been a balancing act.
I couldn't keep him inside all of Memorial Day Weekend. So on Sunday he went out a bit with Yitz to practice riding his bike.
He came home and showered before dosing. Then 2 hours after dosing we took him out to mini golf and then he came home and showered again. It's crazy.
How long is he supposed to stay on zyrtec and flonaze. It's not healthy to be on medicine this long- but it's too risky to stop. He already has been on it every single day since beginning back in October.
How will I wean him off? How will I know when to put him back on it?
SLIT would take away all those issues!!!!
This is DEFINITELY something we will be exploring, but we would have to wait several months before beginning.
Our doctor said that we should wait until after he completes OIT before starting SLIT. otherwise his body would be fighting too many things at once.
This is quite the balancing act indeed.
His poor little body housing the heart of a warrior who believes...
who KNOWS
he can do anything.
We may be down.
But we're not out.
NOTHING is going to keep him down....
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