HOLY CRAP MY NERVES ARE SHOT. I F*#*ED IT UP.

...So Coby had a reaction tonight.

And in hindsight it may have even warranted an epi and I am so mad at myself for not recognizing it in the moment.

In the moment it is so easy to dismiss something. To justify it away.

I had a premonition going into today's appointment.
I had a weird feeling at the end of the appointment.
But I dismissed it all....

Before going into today's updose appointment I felt sick. Not sick as in coming down with something. But my head was pounding. My stomach pounding. Felt like I was going to throw up---- but I knew it was nerves. Though I didn't know why.

Yeah, obviously every dose, every appointment is scary. The potential of a reaction is there. BUT this particular appointment while it was an up-dose, wasn't very different than last week's (both were a 75mg increase). This was not a HUGE jump (like it will be next time). Today was not a change of peanut form, which can often bring out reactions. It was just a regular up-dose. Yet for some unknown reason my nerves were beyond regular.

I even posted as my status update on facebook that 'hope this is not a premonition', shortly BEFORE heading out to the appointment. Yeah I've posted nerves before but never called it a 'premonition'. Until today. I even called Yitz before I left and asked him if me feeling crappy was a premonition and that I shouldn't get in the car and that I shouldn't take Coby to today's appointment.

But I dismissed it.
Took some pain relievers.
But otherwise dismissed it.

I didn't even want to get dressed to go- so I sort of didn't. I put on black lounge pants that I never go out in public with but this time I felt I needed to be in comfy clothes so I wore that instead of jeans.
And we went.

After his hour of observation was up and we went into the doctor's office for a re-check, I had yet another gut feeling.
Which again I dismissed.
Coby had laid down on the table. He NEVER does that.
When the doctor came in she listened to his breathing and questioned how he felt.
He said, "fine, but I'm very tired."

He's been tired after dosing before. It can be normal. After all it's hard work as the body fights off an even larger dose.

But tired can also indicate a bigger reaction.

But I dismissed it.

I even kidded around about how we let him stay up late last night to watch Survivor, and he was still awake at close to ten.

But he never ever lay down on the table before.

And I dismissed it.

As we headed to the car he told me to please hurry because he really needed to go to the bathroom.

I told him I can bring him back inside and he can go now.

He said he wants to wait until he is home and that he can hold it because he was holding it for quite a while.

I began to question him how his stomach felt, when did he start really having to go to the bathroom (because that can indicate a stomach problem/reaction).He told me he thinks he had to go since right before dosing.

So I dismissed it. Because he said 'before' dosing. And having to go can just be a regular 'having to go'.

In the car ride home when he was talking to me his voice sounded a bit off.

I turned off the radio and asked him if he was okay.

He insisted he was fine and that he just swallowed wrong.

I told him to try clearing his throat. So he did. It still sounded off.

But I accepted the 'wrong swallow' since that has happened before. (though now I wonder about all the other times he 'swallowed wrong'--- what if it was more than that.)

So I dismissed it.

He then began to cough.

Are you okay?

Yes, this is just still from my wrong swallow.

Is your throat itching?

No.

Does your throat hurt?

No.

Can you breathe completely normally?

Yes.

I continued, "We are still near the doctor. I can turn this car around and go back. They can help us."

I HAD NEVER BEFORE SAID THAT TO HIM ON THE WAY HOME FROM AN APPOINTMENT.

He insisted he was fine.

I told him to again clear his throat. He did.

Again I dismissed it and I kept driving.

Every few minutes I questioned him.

Something wasn't sitting right. I started singing him one of the songs from his allergy cd that we haven't listened to in months. Singing about how not to keep a reaction a secret. "If I feel bad I will tell my dad, if I feel funny I will tell my mommy. We never keep a reaction a secret...." I never did that before in all of our prior appointments. I never felt like I had to remind him of that.

He said, "I know, I know."

And I dismissed it.

Moments later his voice sounded phlegmy again.

Are you okay?

Yes.

What is going on?

This is still from my wrong swallow.

That makes no sense!

He started to make jokes and giggle and talk and he sounded fine again.

So I dismissed it.

After all he said he was fine. He was happy. He was playful. The doctor had already checked him and discharged us and said he was fine to go.

So I dismissed it.

I mean, Coby is never one to complain. He always puts on a brave face. When he gets fever of 105s he insists he feels fine. Amazing that he is always like that, but also sometimes you need your kid to complain!

He reminds me of his brother Josh. Josh never complained. Not when he had pneumonias. Not when he had swine flu. Never ever ever. And his birthday buddy (well almost; they are one day apart)--- is the same exact way.

When we got home Coby went to the bathroom.

He then watched some tv as I blogged from the other side of the room.

He was lying down on the couch.

"Why are you lying down Coby? You don't usually do that."

"I'm just tired."

Okay.

So I dismissed it.

I started wondering why he was not begging me for the computer.

That was not like him. Usually he yells at me to get off the computer so he can have a turn.

Instead he was lying down watching tv.

I stopped dismissing it.

I called him over.

His face seemed a little bit blotchy. Two days ago he had come home from school with his eczema acting up on one side of his face, but it had mostly faded away by earlier today. But now it seemed a bit irritated again.

Maybe that's just my imagination?

As I was finishing up my blog post from a few hours ago, I decided to examine his body. So I pulled up his shirt.

HOLY CRAP! Pictures don't do it 'justice'. He had hundreds of spots all over. Some were white. Some were pink. Some were smaller. Some were bigger. On his arms. His back. His trunk.

We quickly paged our doctor and e mailed them the pictures. A nurse quickly called us back but upon seeing the pictures she said that some spots look like irritation, some like a rash and a bunch of others like small hives and she paged the main doctor who was on the phone in under two minutes.

We had him on speaker as he doctor questioned us and questioned Coby who said, "I feel fine. My throat hurt a little bit before though." (WHICH HE NEVER ADMITTED TO ME!)
Coby went on to say, "I'm not itchy." So we then pointed out all the scratch marks that he had on his body from his scratching.
"Oh I didn't realize."

The doctor said to keep an eye on him for at least another hour. He said that while we are already out of the 'two hour period' post-dose, where the risk of reaction is at its highest, it is not unheard of to have delayed reactions many hours later. He told us that if Coby's breathing does not become labored and the itching doesn't get worse to 'let it ride', and not even medicate him.

I was happy about not medicating him because one of my biggest fears is that medicating him with the lesser medicines of benadryl and oral steroids would mask anaphylaxis, which had happened in some of the kids who died from their peanut allergy. They took benadryl which masked their symptoms and when it became clear what was happening, it was too late.

I didn't want to mask anything.

I took a breath and said, "Coby---- you need to tell me when you are having any type of reaction!"
He responded, "But my face wasn't red."
WHAT?
Apparently for some unknown reason Coby thought as long as his face doesn't turn a deep red it can't be a real reaction. I do not know where he got that from. I had always thought we did such a good job in teaching Coby about this. He has caught labeling problems. He stopped people from giving him things with peanuts. He realized when something was 'off' in someone or something else.

But not in himself....

I kept Coby glued to my side for hours. In fact he is still awake now at 10:03 because we were scared to let him go to sleep. I will sleep with him tonight.

BUT....

Thinking back.

At the end of the hour.
Lying down on the table.
In the parking lot.
Having to go to the bathroom.
In the car.
On the way home.
He was clearing his throat.
He was coughing.
I did not pull the car over.
If I trusted my gut.
And I pulled the damn car over. Somewhere. And I examined him myself. And I noticed what was spreading all over his trunk. His arms. His back. Would I have been able, in the moment, to recognize that Coby was indeed having a TWO SYSTEM REACTION? A REACTION INVOLVING TWO BODY SYSTEMS IS ANAPHYLAXIS. Skin and his throat. That warrants an epipen and a call to 911 and a trip to the hospital.

WOULD I have recognized it? Or would I have dismissed it. I mean, maybe the rash and hives only came about hours after the throat thing. And here I go rationalizing it away again.

It's too easy to dismiss things 'in the moment'. Even when he was having his big initial anaphylactic reaction, years ago, everything moved in slow motion. I questioned what was real. I took it slow. I dawdled before paging the doctor. I was nice and calm in the moment and didn't rush the paramedics as they seemed to take their own sweet time as well. When we were later told that he was moments away from dying.

I didn't realize then.

I dismissed it all now.

I had a gut feeling.

But I dismissed it.

Again and again and again.

And I am still questioning everything.

We are now 5 hours out of his dosing. He still has hundreds of spots, but most have faded in color and many faded completely away. Not out of the woods yet- but heading in the right direction.

(I guess that while James screwed up the outside shell and giving us the same one as the 100s, it's kind of obvious now that he did in fact updose today--- unless Coby is about to get sick- b/c an illness can bring out a reaction as well... and here I go second guessing myself again).

I hope tonight is a peaceful one. I pray that Coby tolerates the rest of the week's dosing at this level of 250 better than he has tonight.
I realize that if he doesn't, we will have to down-dose or remain on this dose a bit longer than the usual single week. I also realize that if we need to remain on it longer, that I don't have enough capsules to get us past a single week since one shattered at the doctor's office today.
Again.

"Just because you're paranoid, it doesn't mean they're NOT out to get you." How will I know how to recognize what in fact IS a true emergency and needs immediate response vs. something that I simply attribute to the anxious personality that I have.

What should be dismissed?
What shouldn't?
Tonight I just dismissed.
I shouldn't have.
And I considered myself an 'expert'.

I am not giving up.
 If anything this just shows me how important it is to get my kid desensitized.
 To keep my kid safe.

Because if when push comes to shove I just 'dismissed', and I thought I 'knew it all'.... how can I expect him to remain safe out there in the real world with all the 'non-experts'?

Tonight I didn't do my job.

Not by a long-shot.

"TO FREEDOM!"

As we were heading to the car to get to today's updose appointment, Coby charged at the car with his fist raised upwards and shouted, "TO FREEDOM!" Awwwww!

Yep, "Go the distance" is another song that reminds us of this journey:

"I'll be there someday, I can go the distance

I will find my way if I can be strong
I know every mile would be worth my while
When I go the distance, I'll be right where I belong"

Coby was all dressed up in this week's motivational shirt and even a new hat and he was ready to dose! His nurses and doctors always check out his shirt of the week. They love that it is always themed to match our journey.

Never back down!

And so up-dose he did! (I was actually feeling quite antsy about today's appointment though I don't know why I had 'extra' nerves today. After all the next two up-doses are A LOT scarier than today's. But nonetheless, I was all headachy and nauseaus and needed to take two ibuprofen, two tylenol and then an excedrine migraine to be able to get us over there. At least it worked out in the end.) 

After his intial check and they cleared him to up-dose I struggled to get that stupid capsule open yet again.
It splintered apart.
Argh!
Again?!
So I threw that one out and got the next capsule open.
And now I'm panicking that if Coby cannot up-dose next week OR if he does updose to 500 next week but then needs to downdose, we won't have enough 250s to get him through. Argh. I thought this part of the stress was over. Guess not....
Sigh.

(I'm also a bit worried that our apothecary screwed up even more than I initially thought. The shell seemed tiny to be holding so much flour and it did crack into pieces again. When I got home I compared the white 250 capsules we have to the single green 250 capsule he made us and there is quite a difference in size. I then compared the white 250s it to our left-over white 100s and the capsules are EXACTLY the same size. Are you bleepin' kidding me???? When I took the picture to send to Yitz, I ended up mixing up the supposed 250 with the supposed 100 and now have no idea which is which. So the bleepin' guy color coded ONE of the 250s to green, same as one of the 500s, YET all the remaining white 250s are the SAME EXACT SIZE as the 100s???? So now I'm in a panic worrying what if today I ended up down-dosing Coby back to 100 and we are going to accidentally be dosing him with the 100s over the next week instead of 250 and when we go in next week to jump up to 500 I will end up causing a reaction. I mean 250 to 500 is already a huge jump but if I accidentally end up jumping him from 100 to 500--- OMG! I THINK there was a lot more powder packed into today's capsule compared to the one two weeks ago but I won't know for sure until tomorrow when I open both of them to compare the content quantity---- I cannot open them tonight to check because the powder is not supposed to sit out so if I tested it today I'd have to toss  away yet another pill... I 'm not sure how much you can tell in the picture--- but there is a sizeable difference between the two capsules that supposedly both hold 250, yet the capsules are EXACTLY the same size that hold the 100 and 250. BLEEPIN' MORON!!!!!) 

green capsule is much fatter and bigger than white
yet they both supposedly hold 250

same exact size- one with 100, one with 250

Anyway at the office Coby did great!!!!

dosing!

All this PLUS more came out of the '250',
so I really hope we dosed correctly

After the hour was up and the doctor checked him out she said to him, "This peanut thing is easy, right?" Haha! Boring and easy is what we want!

We asked her a few questions like:

 Q. If he graduates, can he STOP wearing his allergy bracelet?

A. Nope! He should always wear it as a precaution. (He was not happy about that.)

Q. Why is he still having sensitive skin and eczema break outs--- shouldn't that stop as he is desensitized?

A. Good question- no research was done on that specific question- but it would make sense that it should!

Q. Will he react when I open the bag of shelled peanuts to all the dust being released into the air?

A. He should be okay- though don't have his head directly over the bag when you open it.

Q. When does he 'graduate'--- after his final updose of 12 peanuts or after his final food challenge of 24 peanuts which is a month later?

A. There are two little ceremonies- but the bigger one is actually after 12! If he passes the final updose of 12- he is considered 'graduated'

Meanwhile he passed today's up-dose!

And so we left.  In the car ride home it was a bit nerve-wracking for two reasons. First, Waze was not offering me my usual route and I am a creature of habit--- so I did it without Waze and didn't get lost!!!! Yay me!
But more importantly, it was nerve-wracking because Coby was coughing a bit and had to keep clearing his throat. He insisted he had swallowed wrong. Every couple of minutes I interrogated him: "Do you feel itchy", "Can you take a deep breath", "Does something feel stuck in your throat?"
"NO. YES. NO!"
I was still quite a bit scared (what else is new) because that 'wrong swallow' lasted for most of the drive home. He also said he felt really tired. I know part of that is 'normal' as his body fights this bigger dose. (Assuming James didn't %#*@ it up even more than I already know about), but it's still nerve-wracking each time.

But we got home just fine and it was then that I pointed out to Coby the 'BOX' that arrived. I had taken this picture earlier in the day, before Coby got home from school, when I could not bring myself to open it.

So when we got home from the up-dose appointment I said to Coby,
"Guess what--- the peanuts arrived! Do you want to open the box?" 
"Um, no. Not today."
I don't blame him... I really don't want to open them either. Like ever.... But I will not tell him that.

One step at a time.
That's all that can be expected of us.
As long as we keep moving forward.

"TO FREEDOM!!!!"

Was about to post this when I realized Coby was breaking out on his torso. Nothing too bad- but something. Could be 'normal' as he gets used to higher dose, but again- nerve-wracking. We will keep an extra eye on him.

OpportunITy

OIT may officially stand for oral immunotherapy, but we are also choosing to see it as standing for OpportunITy.

"Some want it to happen. Some wish for it to happen. Some make it happen."

Coby is making it happen day after day after day. He remains optimistic and upbeat and is not letting the fear stop him. He keeps going and going.

And how could he not?

The odds of OIT working are quite high -as high as 90%!
Though numbers don't always work in our favor....

On that day one Coby was not one of those who fell in the 95% of patients who make it to 3mg. In fact 3mg is SIXTY TIMES the amount of what Coby made it to back on day one.
Month one was a bit of a roller-coaster.
But he continued with it, did not give up and now he is about ready to updose to 250mg; an amount more than 80 times what those 95% of people get to on day one---- which is about 5000 times what Coby got to on his day one! Yowzers!!!!

My boy is grabbing this OpportunITy and making it happen.

And yes it continues to remain a theme in his weekly spelling sentences. These week's include:

Thankfully this week dosing went by relatively smoothly.
I got all the capsules open pretty easily---- only cracked one, and not even so bad!

I did get a little nervous when Coby came home from school the other day with some type of hives/rashy thing on his face. We sent pictures to our allergist. She said it is either his eczema acting up or his sensitive skin reacting to something or I don't even know. But as long as it didn't itch or begin to spread and wasn't related to dosing it's okay. Thankfully it did none of those things and a day later it had mostly faded away.

It is a bit frustrating though because I was just hoping we could get past these random 'out of nowhere things' by now, though truthfully I don't know if we'll ever be completely past it.  Sigh. I'm just glad I noticed it BEFORE he dosed that day, or I would have been in a panic thinking he was reacting to his dose.

But anyway---the OMG moment of this week----- 

WE FREAKIN' ORDERED PEANUTS!!!!!!

I literally had that computer screen open for DAYS before I was able to bring myself to push the 'purchase' button. My heart was pounding and I had to keep walking away from the computer to 'just breathe'.  When Coby saw what was on the screen he actually said, "WHAT. IS. THAT?" When I told him it was peanuts, (though obviously he knew that since the kid could read), he audibly gasped and started making punching motions at the screen. 

When I asked him why he was doing that, he said, "I don't like peanuts."

"But you will have to eat them soon."

"I know and I'm upset about that."

"Why are you upset about that--- I thought you were excited? I'm confused."

"I'm also confused."

Awwww my sweet brave little boy. As excited as he is to 'keep going'- he must be terrified at the idea of eating the actual peanut (in peanut form). After all, the last time he did, it nearly killed him, and now here we are just days away from asking him to do it again. That is terrifying.

But Coby knows what he is fighting for and he aint giving up. We decided that we are in this together and to therefore order the peanuts together and so together we pushed the button on the mouse.

literally the order is happening RIGHT HERE at the push of this button!!!

And now his poison is on its way to our house. It will probably get here tomorrow.

It is soooooo weird that we have to feed him the very thing that can kill him, in order to save him.

Tomorrow we updose from 175 to 250. Next week (IYH) 250 to 500. And the week after that.... 

Breathe in

breathe out

It's going to get really extremely real.

breathe in

breathe out

15 days (hopefully) and counting....

breathe in

breathe out

FIND THE POSITIVES

To most things one may perceive as negative you can also find the positive.

Example--- Friday afternoon I was rushing around like a madwoman- vacuuming, cleaning the bathrooms, dusting the tops of furniture.... (yes, I know Pesach cleaning doesn't NEED to be spring cleaning- but that's just what happens anyway...)

but then it was dosing time- which forced me to stop what I was doing. Since I need to observe Coby for the next couple of hours, I was forced to stop working, kick my feet up and just chill. Yes a two hour rest time can be a bit of a nuisance, but at time an enforced rest time can be a very good thing indeed!

On Friday Yitz picked up the supposed proper color coded peanut capsules for Coby. I was excited to peek in at them to get a cute rainbowy picture of cute little capsules. Instead what I found was this:

Are you kidding me???? They only managed to find TWO colors?! The whole purpose for color coding is to make sure you don't screw up and accidentally give your child the wrong dose. The number/dosage is written in teeny print on each bottle so having a color coded pill- for example red for 100, blue for 175, green for 250 and yellow for 500 would have been extremely helpful. Instead what we got was the above. Easily interchangeable 100 and 175s and 250s and 500s. MORONS! It is so easy to screw up and give the wrong pill with what they did and those results could be catastrophic. Thankfully I can find the positive again here with the OCD/analness of my personality because it means that I have all the bottles packed away except for the current week's, but knowing with certainty that a specific color meant a specific dose would have been nice. IDIOTS! 

At least I can now get the pills open relatively easily, though truth be told the powder is a bit reluctant to come out of its 'casing'. Even digging around with a toothpick doesn't remove 100% of the powder. BUT it is a nice change that the flicking at it, and squeezing it and tapping it to remove as much of the powder as we can does not result in it splintering in my fingers anymore, so that's a plus! Progress!

Coby is being a real trooper downing his dose. It takes a few spoonfuls now to get every last speck (that we managed to remove from the capsules) into him. Coby is not a big fan of this but he understands the importance. Today he was talking about all he will do when (IYH) he graduates--- the ice cream cakes, Entenmanns, the restaurants--- but he reminded us that he has no interest in eating "em em ems". It was too cute- he didn't even know how to pronounce M&Ms.

Parents have been posting that it becomes really hard for the child to dose when it comes to the highest form of powder- and it can be a real challenge for the child to get it down. I can understand that since he's already having a bit of a hard time swallowing 175, and in 12 days time he is expected to swallow 500! Yikes! But we are all confident he can do it. He really is my super-hero! It is crazy that I am now researching what type of peanuts to buy within the next few days. How is this happening?!

Meanwhile I am constantly being reminded as to why we OIT. I read about another food allergy death. The guy was too embarrassed to speak up in front of his friends and tell the restaurant his allergies. His parents admitted that he was always embarrassed about it. And now he is dead. It is horrific. I can understand though why it would be tough to speak up. It could be shyness. It could be the want to just fit in and not call attention to themselves. It could be hard. That's just real life. Right now Coby loves talking about his allergy. He is not embarrassed by it. But that changes when kids become tweens and then teens and young adults. That's just the reality of it. He may love talking about it now, but that probably will change. But for now he is NOT shy about talking about his allergy now, at age 8, he is even more excited talking about OIT. 

When we put Coby into a different school than his brothers attended it was because we were told Mikey & Josh's previous school may not be able to keep him safe. As much as we loved their school for every other reason, Coby's safety comes first, so we needed to place him in a different school. When we chose the school he is currently in, we felt comforted when the head of the school at the time, told us that one of his children also has anaphylactic allergies and he gets it. (Obviously we felt sorry that he was going through it as well, but we felt comforted that he gets it). We were also comforted by all the open communication we had with the school nurse. She assured me she will take good care of Coby and she has. She was always available to us, always willing to learn more, train and re-train the staff and went above and beyond in helping our Coby-bear. We just found out that she is making aliyah this summer. When Coby found out she won't be here next year he was so sad. "I will miss her so much!" he exclaimed. He doesn't even realize the 'behind the scenes' work that she does, he just knows how nice she is. She has been a G-d send to us. Coby couldn't have gotten any luckier in that department.We will miss her for all she has done for Coby and for the sweet person she is.

I am now extra relieved that come 4th grade Coby should be completely desensitized (if all goes well) when she will no longer be there with him. Yes, they will get a new nurse, but her shoes will be hard to fill. Another win for OIT.

And once again--- labels... It is not law to disclose the type of facility a food is made in, but if it doesn't say "made in a nut-free facility"- there is no such thing as guaranteed safety. The following item DOES state, 'made in a facility with nuts'--- and this picture shows exactly WHY we will not buy anything made in a facility with nuts. It is a game of Russian Roulette.

Yep, that's a peanut mixed in a lentil mix.

I cannot wait til we can rest so much easier because OIT will set us free.

MOVING RIGHT ALONG... HAPPY UP-DOSE DAY!

Woot, woot- first week of capsules completed! And on to bottle number two of four!

And hello Spring!!! We are now rounding third base---- we began OIT in the fall, continued throughout the entire winter and now it is the spring. To everything there is a season...

Coby is just beyond thrilled at his progress and it is on his mind a lot. Take a look at four of his ten spelling sentences this week: 

At today's updose I got the capsule open in under ten seconds!!! Yay for bigger and more sturdier capsules! Coby exclaimed, "there is so much more peanut now!" Yes indeed bud, that is the goal. It actually took a few extra licks of the spoon to get all the peanut residue off! He needed to resort to holding his nose to deal with the 'fried worms' smell, but he did it!

Add caption

And in case you didn't catch a good glimpse at this week's OIT shirt:

CRUSHING IT DAILY!

During our observation hour Yitz contacted me about a party Coby is supposed to attend this weekend. We confirmed the pizza is safe and now we are trying to figure out if the cake is.

Is it safe for him to eat? 

Is it safe enough for him to be near? 

If it is safe enough for him to be next to but not to eat should we have him leave before the cake is served? 

Should we have him stay and watch all his friends eat it? How much will that upset him? 

And how wonderful is it that this may be one of the last times we have this issue! 

How freeing will it be when he can just go to the party- and enjoy! Bliss! In just a few weeks time, he may be cleared for 'cross contamination'. (Some doctors do that at 3 peanuts, others wait until the end.)

A few minutes after dosing Coby began complaining about being itchy and scratching at his arm. My heart did a little pitter patter, but I inspected him and there was no evidence of hives and the itching subsided, so pheeeew!

Today we also had a much better sound-track next to us compared to what we had a few weeks ago. A few weeks ago we witnessed a child go into anaphylaxis. Today.... we witnessed a child graduate from OIT. The whole staff took him to a room, surrounded him, applauded for him and handed him a graduation bag and a diploma.

I cannot imagine.... actually I think I can. 

I cannot wait. 

I will (IYH) be more proud of this graduation than most other ones. 

When the doctor checked him out at the end she even said, "before you know it, it will be you!" 

Well, we still have several more months to go, but if all goes well, we may be just past the half way point!!!! (I also don't know if graduation happens at the final updose of 12 peanuts... or after passing the food challenge of 24 peanuts a month later.)

Coby asked the doctor, "Can't I just eat half a peanut now? Or a quarter of a peanut--- I'm past that point anyway!" My eager little boy! (Of course she said 'not quite yet!')

I admitted to the doctor that I hadn't eaten anything with peanuts in over six years because of this and is it possible that I could have developed the allergy too. (There is research that shows that if you avoid a food that could be an allergenic one for a period of time you may develop an allergy to it--- it's not too often, but does occur.) She said since I didn't have the allergy in the past, I should be fine --- and maybe both me and Coby can have our very first peanut butter bite together! Awwwww. Though truth be told I'll be scared for both of us that day!!!

In the car ride home I asked Coby, "how are you doing?"

His response.... "Better than ever!"

That's my boy!!!!

I just updosed to 175mg! 48% of a peanut!!!!

MATH MACHLOKET: If you want to make your brain spin read on:

Recently I learned that there is actually a machloket about how much each peanut dose actually is....

 Someclaim a full peanut weighs 250-300mg (which is what I have been going by all along.) Other are saying each peanut has 250-300mg of protein and a peanut actually weighs 500mg.

So I was wondering if all of the signs I've been making this entire time for Coby have ended up being twice as high as what they actually should have been (ie- when I said he was at 1/3--- was it actually 1/6?) We spoke at length with the doctor about this and went through the math of it all, and by the end of the conversation the doctor himself was confused... 

The doctor started off by saying  that peanuts are 100% protein and the capsules are just 40% protein.

 But how would that make any sense since according to some the weight of a peanut is 500 and the protein is what is 250-300, that would make the protein 50% of a peanut, not 100! He also told us that when they make the capsules they 'defat' the peanut before crushing it down to contain 40% of protein. Yitz then asked  if you remove fat wouldn't that mean it is being substituted by even more protein so it would end up having EVEN MORE protein than an actual peanut or are other things being added to the flour to bring up the weight. We also pointed out that if you look at a label the nutritional value of a peanut is just 16% protein, so where does the 100% come from? And if you use the number 16% and if the flour indeed has 40% then isn't that would be more than twice the amount of a peanut! 

The doctor admitted that we make a lot of sense and he wasn't sure anymore. He actually appreciated the conversation and the brain gears turning. They were simply following protocol of the pioneers of OIT without trying to figure out all the math.  He told us he was going bring our question back to Dr. Nash at Duke (the pioneers of OIT in Texas) but has no solid answer for us yet. 

Yep, we're stumping the pros!!!! (By the time we get an answer it probably won't even matter anymore because I KNOW that his final peanut dose- hopefully in 2 weeks is at least a full peanut and the following week is actual peanut anyway!)

SO.... if I go by what I was going by all along of 250-300mg in weight then today's updose would have been 64% of a peanut. If I say that a full weight of a peanut is actually 500mg then it would be just 32% of a peanut. Since everyone is all confused now, for the purpose of Coby's sign I figured I'd ajust verage the two numbers of 32 and 64 and got the 48% I put in the sign above.... (Then come next week 250mg would either be half a peanut or a full peanut, and the following week of 50mg0 would be minimally a whole OR close to two, after that we are up to actual nuts anyway.)

DOESN'T IT MEAN "BRAVE"?

Yay week one of this annoying capsule week is nearly over. Thank gosh!

Coby came home from school today all excited about his successful siyum! He said he re-checked all the labels and unlike last siyum, where he caught a 'may contain peanuts' on a bag of cookies that was given to him and all the other kids, everything today was safe for him! My responsible little boy re-reading through all ingredients to make sure it is safe.... So glad today went by without a hitch. Pheeeew! And IYH come 4th grade he won't have to worry about label reading at parties anymore!

We then went to work on getting his dose ready. I was a little less stressed today than yesterday since I didn't have the 'time crunch' of having to run back out to do carpool so I didn't need to make sure his first hour post dosing would be over by 5:10.
I still was not thrilled about working that capsule, but I was less stressed doing so today. (Tomorrow will be another story due to the carpool crunch)
Coby took my phone to grab a pic of my irritation of struggling to get that thing open....




















                                            but then voila- (after a while) it worked!

Holy crap it worked!!!!! Sweet victory!!!

He had asked to dose with applesauce today, instead of pudding, since he knows he always needs to eat a bowl of applesauce after dosing because:

for some reason apples helps keeps the more serious stomach aches away! Coby said he just didn't have room after the carb load before dosing for pudding with the dose and applesauce afterwards, so he just dosed with applesauce and was not a fan of that combo!

YUCK!!!!!!

He was much happier, however,  when he opened up a package that came in the mail today that was addressed to him. It was from my brother who soooo sweetly went through shalach manot they received to pull out safe treats for Cobes and send him a bonus safe shalach manot package. Coby was thrilled. He was even extra excited when at the bottom of the package was a note congratulating him for getting to the capsule stage along with a "Peanuts dvd" entitled, "You're a good sport Charlie Brown!" My brother told Cobes that he is a good sport too! Coby grabbed the dvd to watch it but first decided to take a nibble out of these safe peanuts!

Meanwhile more confusion is coming my way--- what else is new. While we are only about 25% done with the capsule stage (if all goes well---actually one of his best friends was home sick today which makes me extra nervous that Coby may catch it too being that he hangs out with him all the time... so hoping he doesn't especially this week--- I don't even know how a down-dose this week would work.... back to liquid????), I began researching what brand of peanuts we need to be bringing with us to his actual peanut dose which is hopefully just 3 weeks away! I was getting mixed messages though which of course brought me more stress. We were told that 'if all goes well' (do you detect a theme here?) it would take 11 doses to reach the 12 peanut stage. (1/2, 1, 2, 3, 4, 5, 6, 7, 8, 10, 12) and that we'd need to bring peanuts that are in the shell to his appointments.
Okay that is simple enough.
Then the PA seemed to recommend that we bring the "UNROASTED" type saying that the unroasted is the MOST allergenic and when you are desensitizing someone you want to be desensitizing them to their strongest of adversaries. Okay that is scary but it makes sense. If you're gonna do something do it right. BUT she also said that if we prefer roasted peanuts that is okay too.
I obviously want what is best for Coby. I want him as desensitized as possible/as safe as possible--- but I also don't want to have to tie the kid down to get the peanuts down the hatch. I want it to taste as good as possible too so he'd be okay eating it each and every day. I actually read in the OIT group of many kids who either hated the taste or got sick of their dosing.... AND BEGAN HIDING THEIR DOSES, PRETENDING THEY WERE DOSING BUT WEREN'T ACTUALLY DOING SO!!!! MONTHS OF TREATMENT DOWN THE TOILET.

Of course I began researching it. I read how unroasted needs to be refrigerated and can be slimy like and can even grow mold. ARE YOU KIDDING???? How can my kiddo gulp down those things day after day after day? But upon further research articles seem to point out the OPPOSITE of what we thought we were told; that it is ROASTED peanuts that contain the strongest form of the allergen as opposed to un-roasted. Well that works for me---- roasted tastes better, isn't prone to mold and it would offer even more protection if we can desensitize him to the strongest form of allergen!

Meanwhile today at yet another call to the compounding place, we were told that James still was not in. Well we knew he wouldn't be since it is not Wednesday,  though why he can't return a damn phone call for something as important as this is beyond me!
Yitz questioned why earlier we were told that James is the ONLY guy who can compound peanut powder there, yet despite James not being in since last week somehow they claimed to have managed to make us additional week 1 and week 2 capsules. So how is that possible?
"Um gee, well- you see, there ARE a couple of guys there who can do it, just James is the main guy." 
Uh, yeah---- I don't hold a lot of faith in these guys. You can not be this unreachable and unreliable and untrustworthy with something as vital as this.
Yet, our doctor and Yitz want to give him one more chance. So now we hope to get through to James tomorrow (since it is Wednesday, so the man is supposed to show up for the first time in a week) to discuss our issues. Our new plan is for me to pick up a new batch of peanut powder at our appointment on Thursday. On Friday Yitz will go back to the local apothecary to pick up the new batch of pills that they re-made for week 2. He will also be dropping off the new batch of peanut powder for them to compound into the correct (PLEASE G-D!!!) capsules for weeks 3 & 4. If the capsules he gives us on Friday for week 2 completely suck too, then we just have to find a way to get to the apothecary up in Suffern and have it done right, (though it will take a bit of turn around time.) These capsules are driving me crazy!!!

But guess what I don't think I had a bad dream last night! In fact I remember dreaming that we had a day off so Yitz decided to surprise me and Coby and bring us to Disneyworld for one day and one night. I was sooooo thrilled. In my dream I remember packing his dose as we rushed to the airport. I was sooooo excited---- but then I woke up. No Disney after all :(. (But I'll take a dream about Disney over those of dosing nightmares and plane crashes any day!!!!)

Tonight when putting Coby down to bed and we were brushing his teeth he pointed to the word 'oral' on his toothbrush and said, 'Oral--- just like oral immunotherapy!'.
I asked him, "Do you know what 'oral' means?"
He replied, "Doesn't it mean 'brave?'"

It might as well babe, it might as well.

CURSED CAPSULES

I cannot wait to be done with the capsule stage.

Yes, I know we only just begun but it SUCKS!!!

It is impossible!

I don't think it is supposed to be like this but the guy from our compounding pharmacy is just not calling us back.

Our doctors use a compounding place near their office but it would have been nearly impossible to get there before they close.
So we found a place in Teaneck that does it so we brought over the peanut powder our doctor gave us and picked up the capsules a week later. Last week, as mentioned in another post, first the doctor tried to open the capsule and it shattered. Then I tried pill number two and same story. She was able to do capsule three after a lot of time and effort and said, "I never ever saw anything like this happen before."

The following day we were able to get through to our guy to complain and he also stated, "That never happened before."

Which made me think that perhaps they screwed up and packed our powder into the wrong 'shell'.

The pictures of capsules other people in the OIT group posted did not look like my capsules.
In fact Yitz had even told the apothecary to make the doses color coded (which is what they usually do anyway) so we wouldn't mix them up but every single capsule we received is WHITE.

Yitz tried to get those damn things open and realized how close to impossible it is. He tried to call our guy back several times since Friday.
We cannot get through to them.
They claim that "James" is the only one who is able to compound peanuts and he wasn't going to be in again until the following Wednesday. We asked them to reach out to him so he can call us back. They said 'okay', but James never did call us back.

Now this isn't some 'silly or simple' medicine like a tylenol or a tum. This is a vital piece of Coby's treatment that took 5 months to get to! 
We have very limited capsules and if we run out we are screwed.
If Coby eats a piece of the shattered shell and it cuts his throat as he swallows (which was our doctor's fear) it can cause a bad allergic reaction. (It would mean his allergen gets directly into his blood stream which his body cannot yet handle. In fact we were even warned that if Coby even loses a tooth we have to be very careful about dosing since a small open wound would be in his mouth.)
If some of the 'peanut dust' goes flying which tends to happen when the shell gets cracked and I don't get a complete dose into him, that is bad.

How could the pharmacy be so negligent and unreachable for so many days when they should understand how vital it is to rectify this??????

After school today I tried to get that damn thing open and it shattered right away. The good news is I was able to hold most of the shell in my hand and only one small piece fell into the pudding. (Yes we bought Coby his requested chocolate pudding he wanted to dose with- he said it makes it taste 'a medium amount better.')

peanut flour in chocolate pudding

So I picked out the shell (which the doctor said I could try to do but to be very careful to get each piece so it doesn't cut Coby) but with it came some peanut dust. And as anyone who has any experience with baking with flour or sugar--- those specks go flying. Once a shell cracks all the flour does not end up where it is supposed to.  Instead of gently separating the two halves and simply pouring the flour into the pudding, some flour jumps out, some gets onto my fingers and clothes, some on the table etc. Argh. So with that initial shatter I lost some 'dust'. I used a toothpick to try to pick up each spech of dust but think I did more harm than good. I dosed Coby hoping I got most of it into him. Internally I was panicking, 'what if I lost 10% of the dust? What if I'm only giving him 90mg instead of 100mg and they updose him to the 175 on Thursday and he ends up having a reaction because instead of the 100 he is supposed to have, I'm ending up doing less. Stupid idiot James- this is all your fault!!!!'

So Yitz has been calling the apothecary again and again. Now they told him, 'we used some of your leftover peanut flour' and made 7 more capsules for week 1 and 7 more for week 2. You can come and pick it up.'

THAT MAKES NO SENSE.

Because according to them James is the only guy who is able to do this type of compounding and according to them James was not going to be in again until Wednesday. So who is that magic person who all of a sudden learned the art of compounding peanuts?
And why were they holding on to our leftover peanut powder?
And why the hell would they do anything without calling us back first? They made 7 more week 1s? If all goes well, I only need 2 more for week 1- and we wouldn't even be able to pick them up until Friday--- so we need NO MORE WEEK 1s. THEY FRIGGIN WASTED OUR PRECIOUS POWDER!

WE NEED WEEK 2, 3 and 4!

How could this place be so unreachable and irresponsible? I'm kicking myself for not making the pharmacy local to our doctor work in one way or another. Today I did tell Yitz to pick up more peanut flour from our doctor and to just go to their local pharmacy they use up there so I have the proper capsules before updosing on Thursday.... but he said he can't because the local pharmacy that will still be open by the time he leaves is an additional hour out of the way AND he'd have to do it two times (drop off and pick up... since it is very time consuming and tedious they cannot do it while we wait.)

ARGH!!!!

I posted on my OIT group if being unable to get those damn things open without it shattering and splintering is normal and was told "NO! That is not normal, it should be relatively easy to get the two halves apart without them shattering".
They said it should not shatter.
They said it should come apart relatively easily. (One person said hers did shatter and it turned out her place gave her the wrong shells and in fact didn't even put the right amount into each one. Crap!!!)
They asked me if it's possible to 'tap tap' the powder to one end of the capsule and cut the other end of it and pour the powder out. (That sounds interesting, but I do not know how full each capsule is and a scissor can go through some of the powder making us lose some and make it unhygienic as well!  'm also afraid that trying a scissor would just splinter the capsule like it already does when I try to get the two halves apart.)
One person asked me if it's possible to melt one side of the capsule with a curling iron and dump it out. WHAT?! (She did say she didn't know if that would even be possible, she was just trying to think creatively).
Another person said I can order it to be shipped from Sarasota Florida from a compounding place, but I don't have the time to ship them powder and wait for them to ship it back, since we need it now every single day.
Another person said she already did OIT for three different foods and never had any of her capsules shatter a single time.

Somehow we have to make it through to updose on Thursday and get these damn capsules fixed.

They suck!!! 

James is in on Wednesday- so maybe finally Yitz can speak to him?
This is ridiculous.
If James would even admit to his mistake (unless it is me, and everyone else who already dealt with the capsule stage, who is completely wrong) How would we even do it? They used up our powder making week 1s. I have a tiny bit more powder at home to make a few capsules... but either our doctor on Thursday would have to give me a whole bunch more powder that Yitz would drop off Friday and then still have to wait several days to pick up the new batches. OR. They'd have to open every single capsule they already compounded for us to pull out all the powder (and good luck with it not shattering in the process) and we'd still have to somehow manage dosing Coby each day until we get the new ones.

I am so frustrated!!!!

I had originally thought capsule stage would be exciting and in a way freeing. No more coolers. No more glass jars. No more syringes.

But---- Argh. It is so much worse. As scared as I am about stage 3 which is actual peanuts, I am so done with stage 2. Bring on those peanuts!!!

Please please please let's have no reactions during the capsule stage, and no snowstorms and no illness- all of which would cause us to lose at least a week of progress. I cannot stay in this capsule stage a moment more than is absolutely necessary.

IT SUCKS! (Did I say that already?)

Coby on the other hand looooooves everything about OIT. At parent teacher conferences this weekend, his teacher told us how he talks about OIT all the time and is so excited about it. In fact just today as he was playing on the computer he burst into song.

And if anyone is wondering, I did NOT have an OIT nightmare last night! I only dreamed that I was outside in the backyard as I watched a plane get lower and lower about to crash into my next door neighbor's roof. White plane. Light blue writing on it. But hey, at least it wasn't about peanuts!