I GET KNOCKED DOWN BUT I GET UP AGAIN, (at times more easily than others)

So Friday we down-dosed Coby to 2.5 peanuts and he had absolutely no problem with it!!! So we decided we'd test the equivalent in peanut butter (5/8 a tsp) the following day.

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....

ANOTHER SCARY NIGHT BUT HANGING IN THERE

There are certain things in life that just age you and most of them have to do with your kids. Something happens and it changes how you experience life from then on forward. You change how you behave, you change how you see the world and you begin to white knuckle certain things from then on forward.
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!

While this was better than his original reaction, it was worse than what it looked like an hour earlier. An hour earlier his back had been basically clear with most of the hives remaining on his sides and stomach. But now now these new big ones appear on his back?

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!

DID SOMEBODY SAY PEANUT BUTTER?!

HOLY MOLY- IT'S PEANUT BUTTER DAY!!!

YES SOMEBODY DID SAY PEANUT BUTTER!!!

It has been another relatively boring week of OIT, (his only issue being some slight flushing of the cheeks one day),  yay! Over the last week, Coby decided to dose twice at home with the two full peanuts and the other FOUR days with the three peanut m and ms. I'm so proud of him! But as yesterday's spelling sentence (sentence 2) shows, he is still NOT a fan of those 'MNMs.' 

"I DON'T like the flavor of MNMs."

When he dosed with the 'mnms', it took him a couple of minutes to eat all three of them (while holding his nose), but he did it!!! And he hopes it will soon taste better. Meanwhile he told me confidently that he is positive he will love peanut butter....

So how'd it go?

Okay----ish.

Being his own hero!!!!

Wait a sec- I'm really gonna eat this?

The pre-check went fine. And so the doctor measured out 3/4 of a teaspoon of peanut butter. She told me how I have to be careful to make sure there are no air bubbles to insure that he gets his full dose. We then spread it on a graham cracker as he requested. 

And then it was go time.

Haha. "It smells bad!"

And for some still shots:

Sideways thumb!!! I will take that!!!!
That means mediocre! For Coby--- that is awesome!
Woot, woot!

First taste EVER of peanut butter

I was soooo excited he ate it willingly. Slowly, but willingly. I did not have to beg him to eat it. He just kept at it until the whole graham cracker was gone. No gagging. No hurling. It was wonderful.

I was stoked!

.For about a minute and a half...

Within a minute or two of dosing I noticed something under his eye. I thought it may be my own paranoia, so I looked at all the pix I took of him pre-dose and zoomed in and there was NO mark under his eye before dosing. 

Which means it appeared right after dosing.

CRAP.

Cue my heart to begin its racing.... 

I mean, I know Coby's updose was a pretty hefty increase--- 50% at this level is huge, AND kids can have a problem when trying peanut butter for the first time due to its thickness.

I literally ran through the hall looking for a nurse or the doctor. I found the doctor who rushed right in. She also looked at my before pictures and validated that I indeed was seeing something. She felt it and said that it was basically flush with the skin and since it wasn't raised probably was not a true hive but that it definitely was a 'something'. And just moments after dosing!

She said to keep watch and if anything happens to just call and they'll come running. No need to hesitate.

I knew there was absolutely nothing to DO at that point. After all if he was having a small reaction we wouldn't want to benadryl or steroid him because we wouldn't want to mask a possible full reaction.

So all we could do was wait and watch.

And so I did. He started scratching at his right eye quite a bit. His voice sounded a little 'thick'/mucousy when he talked at another point. But he was chill and happy and relaxed.

So there was nothing more to DO.

And so this is how the hour progressed.... 

After the hour was up his blood oxygen level was still good, his peak flow was still just about where it was pre-dosing (190 instead of 200) AND the mark under his eye had mostly faded!!!!

BUT his cheeks were slightly flushed. The doctor told me she notices this tends to be 'his thing'. She said it's not necessarily a 'reaction' at that point, but his 'sensitivity', his sensitive skin and such. (I do hope as he continues he will become completely symptom-less.) In any event, it's our reminder that his body is fighting its poison. Keep fighting the good fight Cobes!

The doctor said she is 'passing' him for this up-dose... but to watch him. (At times things can go okay (ish) in the office, but a day or two later at home, it may no longer be okay (ish).)

It's gonna be a looooong night.

In the car ride home he nearly fell asleep which is very unlike him. He gets sooooo tired on up-dose days. I know this is normal to a degree, but also a bit disconcerting watching your child do something that is so out of character for him (ie-nap in cars and be too tired at home to do anything but lie on the couch afterwards)

BUT- I am taking some comfort in knowing that at least this dose he is FORCED to stay on for two weeks (because of shavuous) so it will give him more time to get used to it.... and while next time he goes up again by another full peanut- at that point it will be just a 33% increase and not a 50% one.

And at his next up-dose appointment she may begin clearing him to eat certain things that are 'made in a facility with...'!!!!

This week his daily dose is allowed to be either:

1. 3/4 teaspoon of (this specific brand of) peanut butter (he informed me he will be trying the chocolate flavor one tomorrow)

OR

2. 3 peanuts from the shell

OR

3. 16 reese's pieces (yeah right)

OR

4. 5 peanut m & ms.

YOWZERS! (Though she did say to try to stick with one or two through these two weeks or to call the office and let them know what we are doing).

Okay-ish---- but he did it!!!!!

LIONS AND TIGERS- BUT NO ELEPHANTS, OH MY!

So after Coby nearly hurled up his peanut m & ms last Thursday, I began to worry that Coby would begin to doubt in himself as he tried different forms of peanuts. I KNEW that if he would just stick it out a bit longer, he'd eventually tolerate peanut m & ms and perhaps even like it. I wanted him to REALLY get that whatever he believes he can achieve. So I bribed him to give it another go and so he did. Mikey had the brilliant idea of holding Coby's nose and Coby asked Mikey to dose with him too. Coby also ate just one at a time, and it went much smoother than the day before. He was still not at all fond of the taste but he said it was already a bit better than the day before, which was kinda obvious, since he didn't even gag once.

He is soooo proud of himself!

When Coby realized he did it, he was absolutely beaming! He said he'd probably dose the entire week, (minus one day) with those peanut m & ms, and each day, while it is not great, is slightly better than the day before. You go Coby!

And in other news we took Coby to the circus! Years ago, months ago, weeks ago- we didn't believe it would ever be possible with his severe peanut allergy.

When each of our kids were born we got a free circus ticket from Ringling Brothers. It has your child's name on it and no expiration date. We had taken Josh & Mikey about ten years ago. When Coby was born we had put his ticket aside to use at a future date. Once he was diagnosed with his allergy, we realized we probably never would be able to use his ticket. 

Once he started OIT I was dreaming for the day I'd be able to bring him to the circus with little or no fear about all those crushed shelled peanuts. When we learned that the very last day of performances (after a 146 year run) would be today I knew we had to bring him. We were waiting for so long and this was our very last chance.

We called his OIT doctor but unfortunately she told us that even though Coby is now currently eating two full peanuts (or 3 peanut m & ms), he is still not yet at the point where he can safely be surrounded by shelled peanuts. She said to give it a few more weeks....

....but the circus wouldn't be around for 'a few more weeks'! 

I felt my heart drop for him. Circus is a rite of passage in childhood--- is he really going to lose this chance too?

I wasn't ready to give up.

I knew the circus retired their elephants, so I wondered if perhaps they retired their 'shelled peanuts' too. No elephants to eat them, so maybe they wouldn't need to sell it to the audience either. Or if they did, hopefully they wouldn't sell the 'peanuts in the shell', but only the peanuts themselves. After all it is allthe 'dust' on the shells that can cause a reaction, but peanuts themselves he should no longer have an airborne problem anymore.

I contacted Nassau Coliseum and asked them if they sell peanuts in their shells. I was so surprised when they e mailed me back saying, "not only do we not serve shelled peanuts, we do not sell regular peanuts either, nor do any of our concession stands cook anything in peanut oil."

WHAT?!

No. That has GOT to be a mistake. I mean circuses are KNOWN for those shelled peanuts.

I contacted them again, "Okay you said you guys don't sell peanuts- but the circus is going to be by you guys for the next couple of days. Do THEY bring in their own concessions? Will they be selling shelled peanuts?"

"The circus does not bring in their own refreshments. There will be no peanuts being sold!"

HOLY FRIGGIN' MOLY! It didn't used to be like that!!! So we awoke early Sunday morning and drove out to Long Island to stand on line at Ticketmaster for a half hour before it opened for the day hoping there would still be (cheap) seats left. (We had to go in person because we had to exchange Coby's 'free circus seat' in person and this way we also avoided online ticket-master fees.) Thankfully there were seats left! 

Coby kept looking around saying, 'what is this place?' (We hadn't told him where we were going just in case there ended up being no seats, we didn't want him to be disappointed.) Once we had the tickets in hand and told him, his eyes got really big and his jaw practically hit the floor.

"THE CIRCUS?!"

 And yes he had a blast!

It was really cute when he saw them selling some junk or another and he asked if we could buy it. I gave him the easy excuse of, "it's not kosher."

To which he sighed and replied, "Awwwww is there OIT for unkosherness?"

Ha. Too cute!

 Afterwards we hit the Roosevelt Field Mall for a few minutes, but at that point both Coby and myself were getting cranky- too much walking around and not enough buying. Boooooooring!!!! But despite the cranky face, I gotta grab a 'peanuts pic' every chance I get. So there you go:

Just three more days of dosing with... 3 peanut m & ms? 2 peanuts? And then it's time for peanut butter!!!! This is INSANE!!!!! Insane in the best way possible! :-)

Anyway here's a few pix from today's show before they close their doors forever....

UP-DOSE DAY---- PEANUT M AND Ms!!!!

Well it's Thursday again better known as up-dose day.

Honestly though, it didn't feel too much like a real up-dose day. Originally I had thought he'd be at this level LAST week, but the doctors decided (and rightfully so) to slow down a bit. 

If he weren't going to try a different form of peanut today in a way it would have been more of a let down.... but since he was going to give  PEANUT M AND Ms a shot, it was still exciting. 

The candy world is slowly beginning to open up to our child!

His up-dose to TWO peanuts is equivalent to THREE peanut m & ms--- so bring on the candy!!!! 

"Who can make a sunrise

sprinkle it in dew

Cover it in chocolate

and a miracle or two?

The candy-man can..."

"Wanta change the world?

There's nothing to it

There is no life I know

To compare with

pure imagination.

Living there

You'll be free

If you truly wish to be

If you want to view paradise

Simply look around and view it

Anything you want, do it

Wanta change the world?"

-Willy Wonka

My Coby is changing his world as well as others'. His optimism and 'go get em' attitude is certainly becoming ingrained it to him and without even trying, he is inspiring others.

He is helping children who are nervous to begin their OIT journey by blogging for them (he has several thousand hits on his blog already!) and is helping to ease their nerves.

In  ife outside of OIT, he tries to encourage others too. 

The other day a six year old was struggling with her fidget spinner. Coby told her that while now it may look like he is an expert on his fidget spinner it took a lot of practice. He continued, "Just don't quit! As long as you don't quit, you will get there. Just like me and OIT!"

So anyway we went in for our appointment, and he was ready.... or so I hoped.... 

Good ol 222!

"Dream it. Believe it. Achieve it."

When the doctor came in he asked her if he'd like peanut m & ms. And she simply said, "It's chocolate!"
And Coby said, "But I don't like chocolate!" Sigh. I certainly thought that there was absolutely no way peanut m & ms would be more of a fail than last week's Reese's pieces fiasco. How wrong I was...

The video was stopped suddenly because Coby was seriously gagging and about to vomit. The doctor even put a can in front of him. It was touch and go for a bit there. If he were to throw up, we wouldn't be able to re-dose him since we wouldn't know how much he had successfully eaten... I held his hand and encouraged him. "Just slow down. Take a breath. You got this Coby. You got this."

And he did!!! Thank G-d.

But in case anyone is interested in some freeze-frames...

Here goes nothing....

"I don't know about this..."

Yep, this says it all....

To hurl or not to hurl that is the question...

Once Coby saw the video and the still frames, he was hysterical. At least the kid's got a good sense of humor, though he did inform me that he will NOT be eating peanut m & ms again- and will only be eating actual peanuts from the shell.

I hope I can change his mind. I know he can get used to it and even love it if he just gives it a few more tries. The doctor did say that as long as today went well he will be cleared to eat (the correct amount of) peanut m & ms at home. She also told me if we do use those that I shouldn't make myself crazy trying to determine the exact right size of the peanut m & m, or peanut. I replied, "I guess you are beginning to really know me." She laughed that a lot of moms are very anxious about that and it's not just me. Good to know...

 The hour passed uneventfully with Coby doing homework, playing on his phone, and writing in his journal.

"OIT IS AWESOME BECAUSE..."

He was so excited to show me one of the pages and asked the doctor to read it as well. She loved it!

Before leaving she told us that we can bring peanut butter next week!!! He will be up-dosing to 3 peanuts. One teaspoon of the flavored peanut butter is equal to four peanuts, so she will work out the math to get it right.

She told us she will check with the head doctor but she is pretty sure that once he reaches 4 peanuts he will be cleared to eat things that are made in the same facility as peanuts! Once he reaches 6 peanuts he'll be cleared to eat things that say 'may contain peanuts'!

HOW IS THIS HAPPENING?

She also told us, "This is it. 8 more up-doses. We are now counting weeks Coby! No more going up by halves anymore- you are on the track to graduation!  The finish line is really in sight!"
She listened to his heart and his breathing and discharged us.

As we were walking out the door Coby said, "Is the door going to lock behind us?" (We are basically the last patient there each time so the door from the outside is already locked.) and I said, "yes".
His reply, "Awwww, then let us not leave. I don't want to go."
Of course I got concerned. "What's the matter? Does something hurt? Are you okay?"
"I'm fine. I just don't want to leave."
"Why?"
"Because I really like this place. I just love it."

Awwww.
But needless to say, we left.

But not for long.
Ironically (for the first time ever) a nurse came running after us and called us back inside.
I had to laugh that Coby was getting his wish and shared what Coby had just said with her. A couple of nurses came up to Coby and told him what an amazing kid he is.
Turns out they had forgotten to do a couple of the post checks so they had to do that. It took all of 10 seconds.
And Coby managed to beat his previous 'score' when it came time to the peak flow, 'scoring' a 240!!!!

You get 'em Cobes!

And so IYH the rest of the night and this entire will continue to go well and next week it's peanut butter time (which he says he is very excited about. Time will tell...)