3rd time in Disney since OITing

...well we pulled it off! Coby thought he was going to an OIT appointment, so we picked him up from school early and I put his "OIT shirt" on him. 

THIS KID IS GOING TO DISNEY!

And off we went! We were once again allowed to preboard but didn't bother to remind the flight attendant to make an announcement to others not to eat peanuts due to a peanut allergy. Flight attendants did not make the announcement and we didn't bother reminding them. No fears of airborne reactions anymore! OIT win!

en-route to Disney

We prayed for an uneventful trip to Disney, especially fresh out of his anaphylactic reaction just days earlier.

Our first time to Disney since beginning OIT Coby ended up with fever which lead to partial doses and many panicked pages to our allergist.

Last year Coby ended up having a delayed reaction on day one/our travel day (just hives), so this year I figured I wouldn't tax his body that was already pumped with excitement and tired from travel and so I decided to half dose him on that first travel day. Success- no reaction.

I thought this trip would be a shoo-in. Morning dosing of 'just' 8 peanuts---- no powder. Wait 3 hours before allowing him to swim or go on adrenaline pumping rides- there is no way he'd have a reaction--- no reason he'd have a reaction.

Right?

Wrong!

Shabbos- all we were doing was lazing around our hotel. Coby dosed his 8 peanuts. A few hours later he said his throat felt a bit weird and he felt itchy. I literally told him, 'must be the chlorine from yesterday's swim,' but we checked him anyway---- and HIVES!

WTF?!!!!

8 peanuts. NO powder. Doing absolutely nothing in the hotel--- and he's reacting?!

I gave him benadryl, but hives were spreading. I gave him steroids and my stomach was dropping. Would it be enough? Would it progress? He mentioned his throat earlier.
I felt sick.
Thank G-d it stopped the reaction and he was fine the rest of the trip.
But what the heck would cause it?

Could it be- that when we keep him busy in the parks he doesn't think about having had dosed and he's fine, but when he's lounging about and not kept busy- his mind wanders to dark places and that can cause a reaction? Our doctor did tell us that she's seen just anxiety itself cause a physical reaction. Is Coby still traumatized as we are--- of his last 10 minor reactions and 2 anaphylactic reactions? Could his own fear have caused it? Something to discuss next week at the doctor's. A few times on the trip he complained about how itchy he was... BEFORE dosing and there were no spots on him. There are so many levels to this.

I decided to half dose him the following day and then full dose him the rest of the days and Thank G-d he was fine.

BUT...

For some reason I thought I had forgotten to pack enough benadryl. I thought I packed just two single servings of benadryl with his epipens. Since I used one up on shabbos I was nervous about what to do the rest of the trip with just one serving left.

Amazon 2 day shipping wouldn't necessarily have it by us within the 2 days due to Martin Luther King day. And I only had one dose left to cover one more day- so I needed it within 2 days! Our hotel store did not sell benadryl. The closest drug store would have cost us about an hour's round trip drive. So instead we had the pharmacy deliver the benadryl to us and paid a hefty delivery fee, but at least we had peace of mind.

Thankfully we did not need to give him anymore benadryl this trip.

...and of course as you may have guessed- once we got home and I unpacked, I found out that I DID indeed have a full benadryl packed after all.

What can I say--- "...of all the things I've lost I miss my mind the most!"

Other than that shabbos scare OIT did give Coby an amazing trip.

Due to dosing, he had to wait a few hours before he was able to ride the scary rides. (adrenaline plus dosing can cause a reaction) but Coby was determined to ride every last ride with his bros, since it would be their last time coming to Disney with us--- so after waiting a few hours post dosing- he braved every last one. Many more than once.

7 dwarfs roller coaster, space mountain, thunder mountain, splash mountain, flight of passage, Expedition Everest, Test Track, Rock N Roller Coaster, Slinky dog dash and the Tower of Terror.

Thunder Mountain

He also had a blast dancing his little heart out once he was allowed to. 

And swimming once a few hours had gone by too.

So how did OIT give Coby an amazing trip?
Firstly---- make-up!
HUH?!
Yep- I did indeed say make-up.
For nearly the past decade due to Coby's allergy and crazy sensitive skin we were too nervous to allow him to get any face paint. Make-up has been known to cause reactions in sensitive children.
This trip?
At the Animal Kingdom Lodge- he got African face paint!

And on the final day of vacation Coby was also able to get a pirate make-over, something he had wanted for years. We were previously nervous to let him have it due to his allergy and extremely sensitive skin--- but now since it's been nearly a year and a half since OIT graduation- it was time to let him get one.

Secondly--- animal food!

Animal food?

Yep- Animal Food!

At our second hotel- the Animal Kingdom Lodge--- Coby was able to participate in making giraffe feeders! There was a whole list of allergen information that came with it--- but we had no concerns at all. Coby was able to completely participate in it!

And yep, the giraffes did come!

And of course--- people food!

We would find out if something was kosher--- and if it was, we'd get it- no further questions needed.

Popcorn. Baked goods. Mickey ice-cream. Club Cool. Dole whip. Minnie's kitchen sink. Hot cocoa.

 

It was a fantastic trip and we were so sad to see it end.

On our way home- we actually got busy exploring the airport and didn't even hear our call for pre-boarding- so we ended up boarding with everyone else---for the first time ever! But I had no worries about that. I didn't need to scrub down the seats before everyone else boarded. He OITd- he's free. Since we are not supposed to dose him before getting on a flight, I knew he wouldn't have a reaction from something someone else was eating.

And Disney 2019--- that's a wrap. The end of an era. It may have been Coby's 10th trip in 10 years--- but it was his last time going with Josh & Mikey. Josh hadn't been able to come with us in six years due to Israel & his college schedule and come next year he's off to grad school while Mikey's off to college or Israel. We were so thankful to get one last family trip to the most magical place in the world and are forever grateful to OIT for making it a trip full of fun experiences, safety & freedom.

"MOM I FAILED OIT."

I cannot believe this has actually happened. Is this even real?

In the moments of crisis I tend to get very calm and bubbly, and then once the danger is over it hits me. I am gritting my teeth, my hands are shaking, my heart is pounding and it's... It's a lot.

After the ten reactions Coby has had in just a month's time followed by lots of down-dosing, Coby's dose was now down to 8 peanuts and 1 teaspoon of powder.

We had 3 or 4 nights with no issues whatsoever.

Pheeew.

Tuesday night I was on my way  to parent teacher conferences at  my school and literally as I was putting my coat on about to leave, Coby complained about being itchy. We didn't see a single hive, but we benadryled him just to be safe, especially since I was on my way out for several hours. I checked in with Yitz several times that night and thank G-d Coby was fine.

And then Wednesday night. Last night. He dosed with his 8 peanuts and one teaspoon of powder at 4:30. Two hours later I notice one of Coby's ears is red. That concerned me a bit, since I now know that as Coby's 'tell'. I asked him how he was feeling and he said he was fine. I took him at his word since he, thank G-d, has gotten really good at telling me when he felt a reaction beginning.

A few minutes later he let out a sneeze.

"G-d bless you. You okay?"
"Yes."
A few moments later a cough and then another cough.

Ooookay... people are allowed to sneeze or cough occasionally.

We go upstairs for dinner and Coby lets out a few more coughs.

"Mom, I can't stop coughing."

Cough. Cough.

And then Coby began to clear his throat. Over and over again.

I picked up his shirt and saw some small hives.

I gave him benadryl and steroids.

But part of me knew...

Yitz paged the doctor.

But I knew.

And I was asking myself why was I dawdling.

I had already been in pjs, but went upstairs to get dressed.

Because I knew.

I grabbed a couple of adrenaclicks (a type of epipen) and put them in my pocket.

I knew.

Doctor said since we gave him meds we can watch him for a little bit and to start pounding him with liquids to wash out his throat. He told us if he didn't hear from us in 15 minutes he would call us back.

Coby downed a cup of Prigit.

And another.

And yet another.

Cough cough.

Clear clear.

I picked up his shirt.

So many more hives.

Two bright red ears.

Two bright red cheeks.

We asked Coby to talk and his voice sounded a bit off.

I pulled down his pants.

Hives going down his legs.

I rolled up his sleeves.

Hives on his upper arms.

"Yitz, remember Natalie..." I whispered.

I knew and enough was enough.

No more waiting.

No more holding out.

I never should have waited in the first place. It was probably less than 10 minutes of waiting, but 10 minutes is huge.

There are no 'do-overs' when an allergic reaction goes wrong.

I explained to Coby I would have to epipen him. He remembered Montana and he remembered how much it hurt, yet even he knew he needed it.

Josh helped me hold Coby down (because if kids inadvertently end up kicking in pain as it goes in the muscle, the needle can bend and break in there.)

And in it went.

And Coby screamed.

"One. Two. Three"

And screamed

"Four. Five. Six"

And screamed.

"Seven. Eight."

And continued screaming.

"Nine. Ten."

10 seconds of screaming as you're holding a needle in your child's leg is a very long time. (Adrenaclick requires 10 seconds of holding it in.)

In the last 4 months I have unfortunately become experienced in giving my child the epipen.
And the auvi-q.
And now the adrenaclick.

Yitz meanwhile was on the phone with our doctor who told us to call the ambulance.

Coby at this point was much calmer but when he tried to stand up he said his leg hurt too much from the needle and he plopped himself down on the floor.

We opened our front door and soon saw those flashing lights.

I cannot believe this is really happening. Again.

4 people jumped out of the ambulance and we met them at the door. They took Coby into the back of that ambulance and began to assess him.

Being checked out in the back of the ambulance

Coby still had hives all over his torso, but they were beginning to fade. His ears were no longer red. His cheeks had faded from red to light pink. He was no longer clearing his throat or coughing.
Let me say it right here: While it is in no way fun to have to use an epi, epis are magic. Plain and simple.

"What time was he epiid"
"7:12"

It was surreal hearing the sound of an ambulance and knowing it was our own sirens as we sped through those red lights. Yitz, who was following us in the car quickly lost sight of us.

Every few moments they checked him out again. listening to his lungs and taking his blood pressure.

When we got to the hospital Coby said his nose was starting to feel stuffy again and he was again starting to feel itchy.

For the next four plus hours Coby was monitored to make sure he was okay and wouldn't have a biphasic reaction. (33% of people end up having a secondary reaction a few hours later which is even worse than the first one)

When he got up to walk to the bathroom he was walking with a limp. I asked a nurse if it's normal to limp after having an epi and she said it was. "Those things hurt!"

It is always so awkward trying to explain OIT to those who are not educated in it.
"Wait, he's allergic to peanuts? But you had him eat 8 peanuts and a teaspoon of peanut powder?!"

Some knew what OIT was and others we had to explain it to. While they politely listened and nodded part of me expected them to leave the room and call CPS on me for giving my allergic child his allergen.

And part of me wouldn't even have blamed them.

Mommy guilt...

But anyway CPS didn't come and Coby played on his kindle and was mostly in good spirits.

Coby giving a thumbs up

But unlike in Montana where we got our own private room in their ER, here we had to share it with one other patient (behind the above curtain). And they were LOUD. And they had their tv on LOUD. And it was getting later and later. And Coby was exhausted and soooo wanted to sleep (like he was able to in Montana)

But it was impossible. 

We wrapped Coby's shirt around his eyes and ears to try to block out light &
sound, but it didn't really work.

Finally at nearly 5 hours post epi we were discharged. The doctor there said  he should have 4 teaspoons of steroid for the next four days.

When we got home I saw the pieces of the adrenaclick I had haphazardly threw around the room at the time. The case. The top cover. The bottom cover. The adrenaclick itself. 

Unlike the epipen and Auvi-Q, the needle of the adrenaclick does NOT retract itself. 

 Coby exclaimed, "That's what was in me?" I apologized to him for having had to 'hurt' him but explained I had to do it in order to help him. Coby understood and admitted that while it was awful, that 'magic needle' had him feeling so much better in literally seconds. I'm so thankful he realizes that and understands.

Coby went to bed. 

And then all that had happened started to hit me. I took a sleeping pill but it only kicked in at about 2AM and I was up by 4. 

What just happened?

Part of me is still traumatized from it happening back in August. And here we are with it happening all over again.

Is this real life?

Just this week at a dentist check up, he told me that I am unconsciously grinding my teeth to a pulp and I need to destress and chill out. Ha. If he only knew...

Anyway, Coby thankfully slept through the night with no issues. Our original plan was to minimally allow Coby to sleep in this morning and go to school a few hours later, but our little trouper was all bright eyes and bushy tailed awake at 7:30AM (still with a slight limp) and ended up going to school on time.

And it is now 2:30PM and I am gearing up to dose Coby in about 2 hours time. Our allergist said to  stop the powder. 

Completely. 

Well at least until we discuss, reassess and figure crap out at our next appointment in February. 

I'll be honest. It's kind of a hard pill to swallow, knowing we spent nearly a year slowly building up that powder to get him to where he was in the summer (four teaspoons) and to now realize we are back at negative square one.

But "THIS" can't keep happening. We just can't keep doing "THIS".

Why is this happening? 

The vast majority of people who graduate from OIT sail off into the sunset and have no problems at all.

Unfortunately Coby is not part of that vast majority...

Why? I do not know.

Maybe Coby is meant to be even more of a teaching tool to others than he already has been. Just two days ago another stranger contacted us and asked if Coby would be willing to speak to her 8 year old daughter. They had read his blog together, loved it and are about to begin OIT. People seem to appreciate the bumps Coby has faced, yet overcome. 

But after last night... it's just a lot.

"Mom why is this happening to me?"

"I don't know hun. We will figure this out."

"Mom, I feel like I failed OIT."

(When he said that i fell my heart shatter in a million pieces, took a deep breath and continued...)

"You did not fail OIT. It is the powder that is failing you. But we will figure that out. Not only did you pass OIT. You came through with flying colors. You did it. You already did it. You graduated. The world is now yours. You know that Coby. You are the strongest person I know. You have inspired and continue to inspire so many others. Despite the struggles. Despite the setbacks, you get right back up and keep going. You my love, are a trouper. You are an OIT champion."

Moms have to put on a smile. Moms have to say the right things. Moms have to hide their shattered hearts from their children to make sure their children are okay. I want to take his pain away. 

My heart breaks for my boy.

So no more powder tonight. Praying dosing with just 8 peanuts brings us back to the ease it used to be. And praying Coby once again sees himself the way I see him.

EDITED TO ADD: ON THE WAY HOME FROM SCHOOL COBY TOLD ME THAT TODAY IS ONE OF THE DAYS HE WOULD LIKE TO EAT EXTRA PEANUTS, AS HE DID A FEW WEEKS AGO (HE HAD 14). I TOLD HIM HE'LL BE DOSING WITH EIGHT. HE SAID, 'BUT I WANT TO HAVE 20 TODAY. I FEEL POWERFUL!!!!'

I TOLD HIM HE WON'T BE HAVING ANY MORE THAN THE 8 TODAY TO WHICH HE REPLIED, "I AM FAILING AT OIT." SIGH.

BRAND NEW BABY MONITOR!!!

So a couple of weeks ago an amazon delivery arrived. And guess what was in it.

No, really guess!

It was....

a brand new...

BABY MONITOR!!!!

Nope, it was not a gift for someone else who had a new baby.  It was for me.
...Yes, I am completely aware that my 'baby' is 10.

So why would I buy myself a baby monitor? That's ludicrous!!!

I bought it because for part of the night it gave me the gift of sleep!

You see, each time Coby has had a reaction I would sleep with the baby monitor on, so I can listen in on him. (If it was a more severe reaction, he stayed in my room with me.) And I was using the same baby monitor I had back when Josh was born---- over 22 years ago.
That baby monitor has seen better days.
I don't know what a typical baby monitor's life is. I don't know if it's like dog years where every year it aged 7 years, but all I knew was this monitor was 22 years old, in human years, and it SUCKED. While it worked well enough for me to hear Coby if he needed me, it had constant LOUD static. I couldn't lower the volume because I needed to hear Coby, so I just heard crazy annoying static.
ALL. NIGHT. LONG.

So who the hell would order a baby monitor when their youngest is ten?
ME!!!

After so after using that static monitor 4 times within 2 weeks, I ordered a new monitor.

Yitz was confused when that package arrived. LOL.

While this princess and the pea is a horrible sleeper, (in fact Yitz likes to say if a moth flapped a wing in Europe it would wake me), Yitz though sleeps through ANYTHING. He slept through smoke alarms going off. He sleeps through loud noises. He sleeps through anything.

This reminds me of when Mikey was a newborn. I was recovering from a C-section and sleeping in a recliner downstairs in the living room (I couldn't do steps so I couldn't get upstairs to my room. And I couldn't sleep in a bed because it would require me using stomach muscles where the incisions were. The recliner was painful enough.)
Anyway each time Mikey woke up to nurse, it woke me in an instant. But not Yitz... And I was in no shape to get out of that recliner myself, walk across a room, lean over the bassinet, pick up the baby, walk him back to the recliner and sit us both down so I can feed him. BUT YITZ WASNT WAKING UP. Not if I called him. Not if I yelled. Nope. So his solution was to give me a water gun. Each time my newborn would wake up. I'd grab the water gun and continually spray Yitz in the face til he woke up. It worked like a charm. :)

So anyway Yitz easily slept through our decrepit monitor's incessant static and was clueless to how many times I kept running to Coby's room to make sure he was breathing.
Yep- I am THAT mom.
I was that mom when Coby was born, where I'd  sleep with my hand on his belly to make sure he was breathing. And now more than 10 years later--- I am still running to him to make sure breathing is still happening. After all- he had dosed earlier that day, and is known for delayed reactions so I needed to check. And check again. And again. And again. And again.
To those of you who don't get it--- all I have to say is that you must never have experienced seeing your kid go through anaphylactic reactions. It is terrifying. It is traumatizing.

So I needed that baby monitor so I could hear him if he needed me. I had hoped it would be a stupid purchase and I wouldn't actually use a monitor on my 10 year old- after all in a way, that's insane!

Well since my last post 2 and a half weeks ago he had 5 more reactions.

That makes NINE reactions in just a month.

To break it down further- in just 1 week he had 3 reactions.

In the last 3 days he had 2 reactions.

So yes I've been getting a lot of use out of that brand new monitor... Unfortunately.

What is going on here?

The doctor even put Coby on extra medications to try to stop this. He is now taking zyrtec and flonaze each day but it still doesn't seem to be working and we just don't get it.

ARGH! This is so frustrating!!!

But OIT continues to remain the right decision for us.

It still comes down to his safety and freedom.

Barely a day goes by when I'm not hearing about another bad reaction.

Over New Year's an 11 year old boy DIED from the SMELL of fish cooking. Yes you read that right. DIED because someone was cooking his allergen in another room.
And there are so many people who say there is no such thing as airborne reactions.
Tell that to the parents who just buried their 11 year old.

I just can't.

https://abc7chicago.com/boy-11-dies-from-apparent-allergic-reaction-to-smell-of-cooking-fish/5006054/?fbclid=IwAR2sJnICf8wAZQPtJhLH7fkRheB_dIPhTXO5p38q9IlCiy0kYWMa0FOobNo

So yes it is frustrating that Coby is breaking out in hives so often from his (lowered) daily dose. It makes me insane, but the fact still remains that I no longer have to worry about the real world.

He continues to enjoy his freedom.

Since my last blog post (again, just 2 and a half weeks ago) thanks to OIT he----

1. Went to a New Year's party at a friend's house, with absolutely no worries,  and ate whatever he wanted.

2. He tried his first Godiva chocolate.

3. We took him to a new restaurant without questioning the staff and he was able to eat whatever he wanted.

4. He had part of a Dunkin donuts muffin.

5. He got to join in the "minhag" of Chinese food on Christmas for the very first time.

6. We took him to a brand new kosher french bakery

where he got to enjoy anything he wanted--- he ate bread, bagelettes, the samples they had out, part of a croissant

, and he even tasted part of the snickers thing (located on the bottom of the picture above)
(which had peanuts on it and peanut butter mousse in it)

--- he hated that one, but that's not the point.

So yeah there have been quite a few frustrations as of late. But do I regret doing OIT? NEVER!

We do have a call out to the doctor to try to figure this out. We are caught in a catch 22. We have
 to keep giving him powder so he is completely safe in the real world from all forms of his allergen
... yet it is that powder that is causing the reactions
 The 9 peanuts he eats each day he has no problem with--- but that one teaspoon powder continues to be a culprit. It is sooo frustrating because back in the summer he was able to eat FOUR teaspoons of powder every THIRD day and most of the time be fine (until his anaphylactic reaction in Montana), yet now at one- he's averaging 2 and a half reactions per week.

Disney is in just 12 days--- and I don't know what to do with dosing him.  I do not trust giving him the powder each morning and heading out to a full day in the parks and having no reactions. I can't have this happen in Disney.
Stopping the powder though could hurt him too.
We really need to figure this out. And fast!

We still have some time before that though, but will he have yet another reaction tonight? Dunno. All I do know is thanks to my new baby monitor I don't have to deal with the static keeping me awake all night. And OIT still remains one of our biggest blessings.

****EDITED TO ADD, THAT AGAIN TONIGHT HE HAD SOME TYPE OF REACTION WITH BUMPS ALL OVER HIS BACK. WE ARE NOW UP TO 10. ARE YOU KIDDING ME? DOCTOR IS RELUCTANT TO LOWER HIS 1 TSP POWDER, YET SAID HE SHOULD NOT BE HAVING ANY REACTION AT ALL AT THIS POINT. HE SAID TO STAY ON THE MEDS, AND LOWER HIS ACTUAL PEANUT AMOUNT FROM 9 DOWN TO 8 AND SEE IF THAT WILL STOP THE ALLERGY CUP FROM TIPPING OVER....
It's gonna be another baby monitor night tonight after all. But hey, no static. So that's a plus!