FIRST POST OIT TESTING, SOME PLEASANT SURPRISES AND SOME NOT SO PLEASANT

Wow that appointment took forever----  nearly 3 hours. We thought we'd be in and out in under an hour.

It was so strange and surreal being back there.

I'm baaaaack!

We saw people in the waiting room at the very beginning of OIT/ the liquid stage carrying their little OIT coolers. Weren't we JUST those people? And here we are now carrying around his OIT GRADUATE bag they presented to him when he graduated.

I bumped into someone I met during Coby's journey, who has been doing OIT for 3 years with her sons (they have a lot of allergies). She told me one of her sons is doing completely fine conquering one allergy after another and her other son had to drop out during his wheat OIT because he developed Eosinophilic esophagitis (EOE). (Her son was actually the one we witnessed go into anaphylaxis on his day 1 of wheat OIT) EOE was one of my fears when doing OIT--- it doesn't happen too often but it can happen. She has a great attitude though saying one son is still doing fine and even the other one was able to knock out a whole bunch of his allergies with it, but still- oysh

We also saw another little girl who was up-dosing to 6 peanuts today and she was so cute chanting, "I want peanuts, I want peanuts!" Coby asked me if we could adopt her. :)

Several nurses and the doctor came in to say hi to Coby. They asked how his life has changed since graduating.
Oh let me count the ways....

The doctor actually said, 'oooh what shirt are you wearing today?' And crap because I didn't put him in any type of OIT inspirational shirt because I didn't think just testing needed one. His shirt does say "I'm what's up!", so I guess it sorta works but not really. She did admire his Peanuts kippah--- so in that we were still OIT themed ;).

The doctor told me she wouldn't be testing his environmental allergies again today because they wouldn't have changed in the year. She told us to get him back on the zyrtec and flonaze from March until early July.

They then began his skin test by putting in just the saline solution to see what a negative response may look like, the control solution to compare a reaction to and thepeanut solution at just the 1% level--- same as last year. And then the waiting began.

1% going in

And we watched and waited

We could not look away from his arm. It seriously felt like waiting for a pregnancy test (though this wait is a 15 minute one, not a 3 minute one), but instead of staring at the pregnancy test willing that second line to appear--- we were staring at his arm willing for the hive NOT to appear.

And during those 15 minutes barely anything appeared!!!!

ARE YOU KIDDING ME?!

DID THAT TEST JUST COME OUT NEGATIVE?!

The control 'dot' though looked so small compared to last year's and Coby felt zero itchiness to that spot either that they decided to give him a second histamine control and we then had to wait another 20 minutes to see what would happen to that control.

The 2nd 'control' did itch Coby a bit and was bigger than the first but not too much.

And yep, NEGATIVE ALLERGY TEST at the 1% level!!!!

Just for comparison's sake... take a look at this year's test compared to last year's:

        October 20, 2016

November 9, 2017 (this pic has the 2nd control as well)             

I even pulled up the above picture and showed it to the staff and their jaws nearly hit the floor. They said, "THAT was the 1% level?! Thank G-d we didn't give him the full dose!!!"

It was only then that they explained to me that a reaction isn't just measured by the 'mosquito bite type bump' you can see that is quite a bit bigger than the control in that first picture--- but in fact all the redness that surrounds the bump is part of the reaction as well. They actually MEASURE from one point of the red to the other end of the red.
So while I knew that at 1% that bump was still several times more the size of the control, it was only today when I took into account all the redness did I really realize how much bigger that 1% really was. Wow!!!!!

And then the doctor decided to go ahead and test his skin at the 10% level!

Leveling up

BTW check out his new allergy bracelet

And holy crap!!! While you do see a bump bigger than the 1% level and it did itch him- it STILL wasn't as big at the control level one! (they measure each bump as soon as the 15 minutes ends and write down that number because the bump may begin to decrease as did in Coby's control after that half hour went by, so they had the proper number to compare them too.)

The doctor then decided to go all for it----- FULL STEAM AHEAD and give Coby the FULL DOSE at 100%. 
I did not at all expect to hear this and surprisingly I actually got super excited. We all did! I literally did a dance in my seat and felt what must be what a kid on Christmas morning feels like!!!

The doctor told us to expect a reaction. She warned us it may even be similar to the big reaction he had last year.

Entering the big leagues here. Full dose going in!

BTW this nurse is AWESOME. Coby was asking her so many questions and she got eye to eye level
and was answering each and every one so patiently and making sure he completely understood.

And after the 15 minutes went by.....

Yep so this one is a positive reaction--- but this is at the 100% level. This is NOTHING compared to the 1% of last year.

It's miraculous!

The area was itching him a bit so they rubbed some cream on it to help with the itchiness.

And then it was time for the blood test ....

Gearing up

...and that's when things went downhill.

 First they tried to get a vein in his right arm (since he's a leftie) and they couldn't get one. Then they looked for a vein in his left arm and sort of got one but it was going soooo slow and then the vein collapsed.

Looking for a vein in 1st arm

Working on the 2nd arm

This arm gave up...

 Three nurses came in to try and help. One brought a portable light to hold up and shine directly on his veins. (Yitz didn't take any pictures at this point because he couldn't see us through all the nurses anymore)

A different nurse took over and she was amazing telling Coby how wonderful and brave he is. I asked the nurses if they could write a prescription for a milk-shake for our little warrior. They laughed and said, 'sure- can you bring us back some too?' :) Thankfully she successfully was able to complete that blood test finishing off back in his right arm.

My brave brave (but unhappy, but stoic) boy

Pheeeeew.
Done.
Well, we THOUGHT we were done and we went in to chat with the doctor.

First she listened to his heart and lungs, paused and asked, "Has he been coughing recently."
Uh, no.

She then informed us that Coby was wheezing.

WHAT?!

She said that it was possibly related to his final skin test of the day. He had been through a lot. Not only did he go through the one at the complete level. The 100% dose was on top of TWO histamine controls, followed by the 1% level, then the 10% level, and only then the 100% one.

I sooooo did not want our day to be ending with a reaction. 
I mean COME. ON. 
We were nearly out the door. 
Don't let the appointment take a turn like this.
Are you kidding me?

I asked if the wheezing possibly could be related to that blood test. That horrible blood test. That painful blood test. That forever blood test That awful blood test.

She said, "It very well may be related to the combination of the stress of that blood test together with the peanut skin test because a dose and stress (or illness or exercise or heat) ups the chance of a reaction. It's possible this wouldn't be happening if the blood test went smoothly."

She had him do a peak flow which came back PERFECTLY.
She then re-listened to his lungs and---- the wheeze was gone!!!!

She however said that while it is great the wheeze went away on its own and so quickly, the wheeze was definitely there in his left lung and she wanted to play it safe.
She gave him a dose of benadryl
And a dose of oral steroids
And told us NOT to dose him with his regular dose tonight.

Sigh.

I her, "Do I need to sleep with a baby monitor again tonight?"
She replied, "Well we know Coby and his strange reactions and often delayed but he should be fine now."

She told us that his blood results should come back within the week but not to be surprised if the levels actually climb to start. She said that Dr. Selter gives more weight to the results of a skin test than a blood test-- and we see today how amazing he has done with those (despite the iffy ending).

Coby asked her if he could change his dosings yet and she told us if we wanted Coby could down-dose to 8 peanuts instead of 12 BUT that would mean no more 100% free eating anymore. He would have some, but not all he has now. She said usually the parents who choose to down-dose to 8 do so if it's a complete battle to have their kid eat the 12 peanuts and have no interest in the 100% free eating. We said that while he hates that peanut butter, he is okay dosing with the 12 and we're not going to mess with a good thing and let's just keep it as is.

She said that it is possible that he may develop a liking to peanuts as his body desensitizes more and more since the body naturally hates what is dangerous to it, but as it desensitizes...
I told her Coby was really asking about his dosing not to find out about decreasing it and losing his freedom but was wondering if the time will come when he wouldn't have to dose every single day or perhaps rest for so long.
She said if that were to happen that would probably be years away. I told her my main concern is the college years and she said by then there should be soooooo much more information out and there's plenty of time before that.

She also told us that she has patients beginning OIT who are so nervous (which I completely get) and she directs them to Coby's blog and his OIT video and it helps calm their nerves. That's my rock-star- continuing to change lives of others!

She then had us wait around for another 15 minutes to make sure Coby was really okay. They then performed another peak flow and lung, and blood oxygen level test. It was all clear and we were discharged.

We get to do this all over again (but hopefully with a better ending) in 3 months.
And then 6 months after that.
And then annually from then on out.

On the way home Coby was falling asleep (medicine side effects) but we filled that prescription which perked him right up. Coby exclaimed that that Haagen Dazs milkshake made that awful blood test worth it!

And now while we wait for the results of that blood test I sit here amazed by what I witnessed today. While it was not the perfect ending I had hoped for (which that stressful blood test may have brought out), it was SUCH a monumental difference from one year to the next. And really--- never in a million years did I expect to see such a huge difference in his very first skin testing post OIT.

Miracles don't necessarily come in a perfectly wrapped package, but one can still choose to see them for the miracles they are.

TESTING TIME

...and here we are the night before Coby's allergy tests. It was so strange getting that reminder phone call once again about Coby's Thursday afternoon appointment. I mean, it has been more than 2 months since he's been there last. We used to get that reminder phone call every single week.

Coby has been freaking out a bit about tomorrow's test. He's nearly in tears about "my blood shot". And he's very nervous about all the pricks that are involved in the skin test and he remembers vividly how itchy he got last time around yet not being allowed to scratch.

Tomorrow they will see if OIT had any effect on his IgE numbers at all. It's kind of a crap shoot. They told me not to be surprised if Coby's allergy level got even worse. (He was/is extremely allergic at level 5). After all his body is being flooded by his allergen on a daily basis and it may make those numbers climb out of whack.

While doctors are hopeful the IgE numbers will begin to fall it still may not be for years to come.

Coby is praying that his numbers fell substantially. If they did, they may allow him to skip dosing a couple of days a week. Or they may allow him to shorten his rest period a bit.

But I don't know....

Any change worries me.

Of course I want his numbers to fall, but I'm also asking myself- why fix what ain't broke... and if dosing every day with a 2 hour rest period has been working, why mess with that?

(I know, I know... dosing the way we do now is not feasible to do forever (though it very well may come to that). Teenage Coby, young adult Coby--- may forget, or he may be out with friends and may not be able to sit still for 2 hours or he may be at college or on vacation and not have his dose with him, who knows. The ultimate goal is that this leads to the cure...)

I feel for my kid who really does not want that 'blood shot'- as any mom would feel for her kid... but while the blood test itself doesn't worry me.... the RESULTS that will come in a few days are what worries me. While I am still too afraid to tamper with how we dose him, I still want/need to see those numbers begin to fall.

Tomorrow's skin test is a whole other story...

Skin is the last organ to desensitize from its allergen since it is the biggest.

Last year, for the skin test, they decided to dilute the peanut solution down to 1% of what they usually do due to the severity of his allergy.
Despite it being diluted by 99% his reaction ended up being 'too substantial compared to the amount of peanut solution we put in him' and they ended up treating him with benadryl andsteroids and watching him for quite a while to make sure it didn't progress further.

So what will happen tomorrow?

I previously asked Jesse if they will once again be diluting it down to 1% so they can accurately compare this year's results it to last year's.
She said they probably WILL dilute it down to that to start, BUT if THAT test comes back negative (dare I to hope), they would probably do the peanut skin test at its regular dose--- which is 100 times the amount of what he had done last year.

Um---- Skin last organ to desensitize yet 100 times the dose????

Can something happen from that tomorrow?

One year ago today Coby was struggling with his 1/12,000th dose. and now he eats 12 peanuts every single day. That is crazy. That jump is way more than 100 times, but still I am worried about the skin test tomorrow. Though I must admit, I also am quite curious for those results.

They will also be testing his environmental allergies to figure out a plan about when/if/and for how long we will begin medicating him with the flonaze and zyrtec to keep those allergies at bay.
He was put on both those medications last October and taken off in June.

Ideally they don't want him on extra meds for all that time--- but if we don't get control of those allergies, those allergies together with peanut dosing can bring out a BAD reaction, and obviously we do not want that to happen either.

They need to help me figure out the balancing act.

So that is what tomorrow (and the days that follow) will bring.

After tomorrow's tests I believe Coby is on testing break for the next 6 months.


In the meantime I am constantly replacing Coby's wardrobe these days. During OIT he gained TWELVE pounds!!! That brings him to about the 50th percentile mark so that's good but it also means he outgrew all his clothes--- especially his pants.

We search online for clothes and I can't help but noticing all the shirts that would have been great for Coby's up-dose appointments if he were still going through it (but thank G-d he is not!)

I still can't believe all we accomplished in under one year's time. I am re-reading my blog and am in awe of all my kiddo has accomplished. I read about all our doubts and questions--- and so wish the me of today can talk to the me of one year ago. All the struggles, all the unanswered questions and doubt, not knowing what was coming---- and boom now year later and we are on the other side.

It is CRAZY!

There are three things in my life that make me say HOLY CRAP DID I REALLY DO THAT?
The first one was going through all those years of fertility treatments. Never in a million years did I imagine I'd have the courage and ability to go through all that. I look at my Coby bear and am soooo thankful that we did it, obviously, but still to this day when I think back to it I shake my head in wonderment that somehow we got through that. (I sooooo wish I blogged about that, but we were mostly keeping that under wraps while we were going through it and only shared some of our story after we made it through the other end. And I only began sharing about it when quite a number of people assumed Coby was a 'whoops' baby and I needed them to shut the hell up and realize he is the very opposite of a whoops baby! I actually did end up writing a book all about it. I didn't try to publish it though I did send it to people who asked to read it.)

The second one was allowing Josh to get on that airplane that took him away to Israel for the year. He's been back for 2 and a half years now and I still have no idea how I didn't tackle him to the ground refusing to allow him to get on that airplane.

The third one was going through oral immunotherapy. It was terrifying. It was impossible. Yet here we are on the other side of it and I am simply blown away.

I never really thought myself as a strong person but I guess you figure out exactly how strong you are when you need to be.

And still, several times a week it seems, I am reading about another food allergy death. The most recent one being a 3 year old in Manhattan. His school knew he had a dairy allergy yet one of the teachers gave him a grilled cheese sandwich. No mention of an epipen either. Just that they got him to a hospital and he died.

WTF???

None of that makes any sense!!!!

Food allergies have no cure. The closest thing to that cure is OIT yet OIT is not a 100% guarantee of never having another reaction either. The ONLY thing that can save lives is education. People don't get it!
Recognize the signs.
Don't feed an allergen to a food allergy kid.
Have an epipen.
Know how to use it.
This little boy dying is so stupid!!!! Besides feeling so bad for his family, it pisses the hell out of me. Get a clue people!!!!

Ignorance kills.

Once again I am thanking my lucky stars that Coby did OIT and how much safer he is now. I (mostly) don't have to worry about the ignorance or stupidity of those around him. I (mostly) don't have to rely on the education of those who care for him.

A few days ago we practiced epipenning with all our expired epipens. This was the first time I allowed Coby to do it himself with no assistance at all. I also re-taught him  how to give it to himself if (G-d forbid) he needs to.

He even made a video that can teach others how to properly give an epipen.

And once again it is also about the small things...

...for the first time ever Coby was able to buy candy from a machine. He never could do that before because even if that particular candy may seem safe--- you do not know about the facility it came from nor do you know if another, possibly unsafe candy was in that same machine before causing cross contamination.

...he was very excited to be able to go to Shoprite with Yitz. He hasn't been there in forever. When I tried bringing him when he was 3, we passed by a bin of peanuts and he started having a reaction. Itchiness, coughing, sneezing, runny eyes--- we had to get out of there fast... And now----

"That was so much fun!" He exclaimed.

...we celebrated his one year OITversary in 2 ways. On October 20th--- the date of his OIT consult and the beginning of the journey for us we took Coby to MOCHA BLEU. He was plotzing to go to a dairy restaurant with waiters. It was absolute bliss for him.

He was so cute in how clueless he was. He asked if they were called waiters since he had to wait for his food. He felt very guilty when we were walking out of the restaurant without "we need to clean up after ourselves and not make that man do it!"

and we celebrated his one year of peanut dosing (which was Oct. 31st) by having him eat goobers. When we began OIT we did so with much fear and trepidation remembering that horrible night when 2 goobers almost took him away from us. And now we decided to show those goobers who is boss. Instead of eating just 2 goobers--- he SAFELY ate 3! (He could have eaten the whole box if he wanted to- but since he doesn't like peanuts. or chocolate. he was absolutely fine stopping at 3--- he just wanted to show them who is now boss!)

holding his nose because he still hates the smell!

MISSION ACCOMPLISHED!

 And just a couple of cute Coby and post OIT stuff.
Just tonight he informed me that he decided to use OIT as a user name for a computer program at school.

And on Sunday we went on a hike. We had planned on doing a simple one mile trek since the weather wasn't ideal... until we saw the name of the more strenuous hike.

PEANUT LEAP CASCADE!!!!

OBVIOUSLY WE HAD TO DO IT!!!!

Sure it meant the one mile easy hike turned into a 2.5 mile strenuous hike up and down very steep and slippery steps on the edge of cliffs in a bit of rainy weather.... but with a name like 'peanut leap'--- it's not as if we had a real choice in the matter! ;)

And after we all survived that Hike (yep that's hike with a capital H- it was a doozy!!!), we rewarded ourselves with lunch in a new pizza restaurant--- and yep, you guessed it- we did not bother questioning them if it would be safe for Coby.

Because we don't have to anymore!!!!! 

The proof is in the pudding. Even if that pudding 'may contain peanuts'. (okay snort)

The proof is in having witnessed Coby eat 12 peanuts every single day for the last several months.

Here's hoping tomorrow we find out that the proof is also in his falling IgE levels.

Good luck Cobester!!!!

You've come a long way baby!!!