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.