DAY ONE

And now we have day one of OIT behind us! And what a loooooong day it was! I woke up at 4:30sh too nervous to try and sleep anymore and Coby woke up an hour before he usually does because he 

was sooooo excited to begin. Two ways of looking at the same exact thing.

We packed up and drove up and were very impressed with the room we were given. It was HUGE! And Coby had his very own nurse who made sure he was okay throughout the day never leaving the room without calling in a 'sub' if she had to run out for a minute. 

couldn't fit room into one frame- the nurse was right behind the glass windows (which are longer than what appear and remained open)

Coby quickly got nice and comfy! Upon arriving they realized that Coby's nose was already a bit congested & had a bit of a 'whistle' when breathing. DAMN YOU ENVIRONMENTAL ALLERGIES!  (They warned us that environmental flare ups can make reactions to the food allergen worse and we were instructed to add a daily dose of zyrtec and flonaze each day.) We were also shown Coby's recent labwork which showed us his numbers are crazy high and his allergy is quite severe. (Who woulda thunk?!) After answering my next dozen questions, (I kid you not!) they decided to start Coby's doses on a smaller dose than they usually begin with to make sure he was as safe as possible. THEY STARTED HIM ON A DOSE SMALLER THAN ONE ONE MILLIONTH OF A PEANUT!!!!! The nurse would spend the day checking his vitals--- performing a peak test to check on lung capacity, his blood pressure, his pulse, the oxygens level in his blood, his breathing and skin for hives. This would occur before each updose (& during each 'reaction')

Mickey Mouse Scrubs! I think we'll get along just fine!

VERY FIRST DOSE!!!!!

In between dosing Coby would spend his time reading, playing games, watching movies and eating (got to keep his tummy 'padded' with certain foods like breads for carbohydrates and applesauce that

Coby always manages to cream me in chess no matter what!)

has some magic power when going through OIT)

feeling a bit shleppy & watching a movie

Yitz spoon feeding him his applesauce

Coby loooooved the doses. Microscopic amounts of 'nothing' dissolved in yummy grape koolaid! (yep, kosher), and he'd be begging them for extra doses. He would get all excited when the nurse would come over to check his peak flow rate (knowing more 'grapejuice' would follow) and he would try to blow as hard as he could, asking for 'do-overs' to try to beat his 'score'. He wasn't so happy about the pulse monitor/blood oxygen checker because it was hard to hold his finger up so he would lean his arm on something to support the weight and watch those digital numbers flit about.

After the first couple of the doses a random spot would appear on various parts of Coby's body- under his chin, his upper right chest etc. Each time this would happen, they would pause our next dose and observe him for a while before deciding whether or not to proceed. At different times Coby would appear 'shleppy' and tired and his face would be flushed or his ear would turn red. Nothing too bad, but enough to make us stop and watch and wait with baited breath.... and continue on.

At 3:15 they gave Coby his 16th dose, which was a level FOUR HUNDRED TIMES HIGHER than his initial dose! (And I was excited we made it to 3:15 because when we did the doctor agreed that I would only have to dose him from now on late afternoons. It's supposed to be a 24-25 hour window between dosing and had Coby stopped earlier I would have had to wake him up at 5AM tomorrow to do two doses 12 hours apart. In my head I already decided I'd keep him home from school too scared about possible reactions. Once we got to 3:15PM and the doctor told us we'd be able to wait until 4PM tomorrow I was so happy we were back to single day dosing. #smallvictories!

During this "15 minute watch" things seemed to have been taken up a notch. Extra nurses and doctors running in. Some wiping of his nose. Itchy and watery eyes. A hand scratching his left cheek. A hand scratching his neck. A hand scratching his right cheek. A hand scratching his chest. A couple of coughs. Hmmmmm. No new hives appeared to be visible. Except there were a few small bumps that didn't look like hives on his belly. Hmmmmm. We were told it SHOULD be okay, we probably would be able to proceed to dose 17. Just before he was to be given dose 17 he started rubbing and scratching a bit more. HOLD UP THAT DOSE! A few nurses checked him out again, and another doctor and then the main doctor. And they decided to call it a day. Coby was given some medicine and observed for nearly another 3 hours before we were allowed to leave. At that point we had been there for eight and a half hours. They packed a cooler with us with our 'at home dosing' showed us how to fill the syringe properly. They decided that our 'at home' dose would be the same amount as Coby's FIFTEENTH dose, and not risk the one (#sweet16) that caused the bigger reaction. FIFTEEN DOSES, okay that was two hundred times Coby's original dose--- it's gotta be something significant, right? Right?

Exasperated sigh.

They are sending him home with a dosage of 50 micrograms. How much of a peanut is 50 micrograms- I mean it's gotta be 'something' since smaller doses had already caused some itching and the following dose caused even more of an reaction.... 

Exasperated sigh.

50 micrograms is the equivalent to about 1/6000th of a peanut. Yes ladies and gentlemen, you are reading that correctly. ONE. SIX. THOUSANDTH. OF A PEANUT. Picture that. Picture that tiny peanut- break that into SIX THOUSAND PIECES--- take one of those pieces, and that is our at home dose that still has the capability of causing reaction if taken too close to a hot bath or too close to exercise or if Coby isn't feeling well or just because. ONE SIX THOUSANDTH.

And it's ironic because our doctor's original goal is for a patient to get through the entire day of 26 doses which the ending dose being the equivalent of 1/50th of a peanut. And that scared me. Because his regular allergist told us something as small as 1/100th can close Coby's throat in seconds. And it worried me because I read that people who do get all the way to the 1/50th dose (5mg) tend to have more adverse reactions going forward, so we had asked our doctor to please stop us at the 3mg dose (if no reactions) which is the equivalent to slightly more than the 1/100th dose. He had agreed---- yet we had to stop much earlier than that at about one percent of what the doctor's original end goal of day one was. ONE PERCENT!!!!!

And I wasn't sure what to feel. I was relieved Coby didn't go into anaphylaxis. I was relieved the doctor was playing it safe. But I was also so frustrated that after all these hours we made it just 1% to the original end goal of today. And I was so scared that Coby was reacting to particles of peanut so much smaller than the 1/100th we were told. But again, thank G-d not anaphylaxis; Coby remained safe enough today. And we started our journey. And this journey is not a race. And I read so many stories of kids as allergic as Coby who even went into anaphylaxis several times during OIT who graduated. They made it. This is not a race Stacey. (must keep repeating that to myself) I just have to keep putting one foot in front of another and we will get there dammit!

I cannot believe we even went through what we did today. I cannot believe we actually took this step. 

Yes it took several hours and it was a bit scary, but we started what we needed to start. It does not have to be a running jump to start, it's just got to be a baby step in the right direction. 

When we were finally discharged and instructed how to give the doses to Coby at home and how to watch him and observe and call if we need any guidance and how we need to keep a detailed record of any and all reactions (and told that IYH next Thursday we will go back to have Coby updose to that 16th dose he reacted to today which is about 1/3000th a peanut and hopefully by then his body will handle it better, and going forward at times his doses will be doubled or even more than that and it will go quicker, and the beginning is the hardest, though reactions can come anytime- and, and, and aaaaack!!!) Yitz tried to find a pizza store local to that place because we were exhausted and hungry and spent but when he called to inquire the pizza store said, "life threatening allergy? Oh no, don't bring your child here! We have peanuts in the sushi and there's the chance it got to the pizza. Not comfortable with that risk." (so of course neither were we)- but that helps drive the point home of how what should seemingly be normal- a piece of pizza, never is when dealing with food allergies.

As we left I told Coby how proud I am of him and how brave he is and he innocently said, "I can't wait til I get to have an ice-cream cake for my 9th birthday!" (or 10th) 

When we got home at close to 7PM Coby started complaining about a stomach-ache... He had no complaints about his stomach at the office. Is it possible? Even nearly 4 hours after his last dose? Unfortunately anything is possible so while we keep a 'stronger eye' on him the two hours following a dose; side effects and reactions can happen several hours later which is why from now on we will be sleeping with a baby monitor on.

(Which of course reminds me of when I read about how someone's boyfriend fell asleep in front of the tv and she went upstairs to bed; and when she came down in the morning, he was dead of an anaphylactic reaction in his sleep. Life threatening food allergies is a scary scary world we live in.)

This is scary. This is hard. But I got to do whatever I can to protect my child. I moved mountains in order to bring him into this world and I will now move mountains to keep him in it. It may be so easy and tempting to bury my head in the sand and NOT go through with this and say 'all will be okay, he'll just avoid peanuts forever,' but in reality it is not that simple. 

It's not a matter of IF there will be a reaction but WHEN, and that doesn't even take into account that so much of life that gets closed off from him in his attempts at avoidance.

 A store bought ice-cream birthday cake is his goal. A safe and happy child is mine. Baby steps. One step at a time. Because as we all know, "a journey of a thousand miles begins with a single step."

...the night before

Well Coby just had his bath.... why is this monumental news? Because from now on his bath or shower will need to be scheduled. He will not be able to bathe within one hour before dosing or at least two hours after dosing.

Tomorrow begins our new normal.... I've been trying not to think about it (though I do now have an additional 14 questions I need answered) but as the hours tick closer how can I not?

For as far back as he can remember he was told (and still is) to read labels and to never ever ever eat anything with peanuts.... and now we are about to feed that very thing to him? 

WHO DOES THAT? THAT'S INSANE!!!!!

What is going to happen to my baby tomorrow? 

I am trying to talk myself down saying, 'some people's roads down OIT were smooth sailing, maybe Coby's will be....' but then inevitably I remember the stories of those who go into anaphylaxis during it.... Yet even those who went into anaphylaxis, many of them continued through treatment and graduated!

Is Coby going to have smooth sailing? Is he going to have just 'regular/bad' side effects? Will he have life threatening ones? How many of them? Some kids had none. Some had half a dozen. Some had to completely drop out.

I feel like in a sense I am ending Coby's 'normal' childhood in order to do this. Can he go in the car after dosing? Will my carpooling in the evenings get screwed up or can I switch dosing times? Can I really keep him somewhat still for the hour before and at least 2 hours afterwards since exercise/jumping about together with dosing can bring on anaphylaxis? Will I recognize the beginnings of a cold and know what to do (some say skip a dose, some say down dose). Will I recognize what is a 'normal' side effect and what requires an epipen and a call to 911? If I make the wrong call--- that's just a price too great to pay.

HOW THE HELL AM I GOING TO DO THIS?????

Tomorrow is 'day one' and this doctor's original goal for day one was to go up ONE THOUSAND TIMES FOLD (if there are no reactions) to as much as 5MG (about 1/50th of a peanut). Yet his allergist he has been going to all these years had told us something as small as 1/100th of a peanut can close his throat in seconds. This doctor agreed to stop at 3MG even if Coby hasn't had side effects to it (I had read that kids who stop by that dose tend to have an easier time in terms of gastrointestinal side effects at home). Though how possible is it that Coby would get to 3mg without reacting? And what will that reaction entail; just some discomfort that an oral dose of steroids can handle? Or are we going to end up in a hospital tomorrow? And how can I face this uncertainty EVERY. SINGLE. DAY. for the rest of forever.

Yet I need to do this in order to give him a normal life, don't I? This can be life saving. If Coby graduates this treatment, he'll be just like his friends- playdates, sleepovers, school bus rides, birthday parties, travel. This can literally open up the world to him. A world where one wrong bite will no longer have the power to kill him.

Yet no matter how I spin it beginning tomorrow I am literally going to watch my child eat the very thing that almost killed him???? HOW?????????????????????

And so I have to keep reminding myself that this can literally save the life of my child. (But why does it have to be so terrifying? 'Terrifying' is not strong enough a word.)  "Courage isn't the absence of fear. It's feeling the fear but doing it anyway." 

Over the last few weeks we talked to Coby all about it. How he will have to remain pretty still and playing for hours every day, how he will have to tell us if he feels any reactions coming- and what those reactions can feel like. We also told him what it would mean if he graduates this treatment and his eyes got as big as saucers at all that would open up to him at the end of this.

On Friday he came home from school saying, "I told my Morahs and my friends that I am not coming to school on Monday. When they asked me why, I told them I am going to begin my treatment to try to get cured from my food allergy!" (I know, I know, it's not a 'cure' and we had explained it to him, but this is as close as it may get.)

And as I am typing this Coby is sitting across the room playing on my phone and out of the blue he calls out, "'I CAN'T WAIT UNTIL MY TREATMENT STARTS!'

Despite what his little body is going to have to go through, he is excited. He sees that end goal; the endless possibilities of safety and goodness and freedom. Through the eyes of a child. Through the eyes of innocence.

...but what I would give to be able to switch places with him.

Inhale. Exhale.

PISSED OFF

Oh my Gosh, I don't remember the last time I felt this pissed off and so angry and so heartbroken. I rarely let my mask come down in front of my kids, yet this one got control of me.

The only time Josh ever saw me get choked up was saying good-bye at the airport before he left for the year. Until now that was the hardest thing I ever had to do as a parent.

The only time Mikey ever saw me get choked up was yesterday hours before Simchat Torah was to begin.

Every Simchat Torah is nerve-wracking because so many unsafe candies are passed out during hakafot and it's a minefield to an allergic child. For a couple of years after Coby was diagnosed I stayed home with him on Simchat Torah. Then the next couple of years we took him to shul for a couple of hakafot but kept him up on Yitz' shoulders with a safe candy in each of his hands as I saw all the butterfingers, reeses peanut butter cups, take 5s, snickers etc. being passed around, watching the children rip it open, shove it in their mouths, chocolate melting on their fingertips. My imagination went wild thinking about all the things these children were now touching that can cause a problem if Coby were to touch it--- the benches, the door knobs, the flushers, the water fountain, the Torahs etc. I kept my eyes peeled on my kid, epipens in a bag right next to me, phone in our pocket, just in case...

Beginning last year Coby no longer wanted to leave after just two hakafot, he wanted to stay the entire time. But last year there was also a section of our shul's bulletin that reminded people that there are children with allergies in shul and to please keep that in mind when they decided what candies to bring to shul to give out to the kids. I still saw a few peanutty chocolates being passed around, but much less than the year before. Coby knew not to eat anything without checking with me or Yitz first (but to say thank you when an adult gave it to him) and not to touch his face (if he touched something with peanut residue and then wiped his eye or mouth or nose with that hand it can bring on a full anaphylactic reaction.... if he simply touched an area with peanut residue without touching his face his reaction would probably just end with hives).

This year in this week's shul bulletin in big bold letters taking up an entire half page was that same reminder. It meant so much to me that people were looking out for Coby. There are very nice people in our shul who always make a point to find safe candies for Coby on Simchat Torah, pack only safe shalach manot for us, make the children hakafot that take place earlier in the afternoon completely safe for Coby. And a simple 'thank you' is not enough to convey how much that means to us.

So what happened this Simchat Torah?

Monday afternoon after shul, Mikey came home from shul and told me he had something to tell me but that I was going to get upset. I braced myself and said, "tell me." He said that there was one particular adult having a conversation with a few of the shul's kids telling them, "If you are upset about the candies and chocolates being given out this year then blame it on Coby. It's because of him that we're not supposed to bring the good stuff."

Mikey tried to defend Coby saying 'it's not only Coby, there is another child in shul with a nut allergy.' That adult said, 'well that kid's allergy isn't so bad.' (turned out there was also another child visiting for this yom tov who also carries an epipen due to a nut allergy)

Mikey, "Do you know that 1 in every 13 kids has a nut allergy?"
Him, "In our shul it's basically just Coby & an entire shul should not have to do all this for just one person. I had to go through the big bag of chocolates I had bought and pull out the chocolates that have peanuts and I can't bring them to shul tonight."
Mikey, "Do you know he can die if he eats one?"

Him, "Still an entire shul should not have to do something for just one kid."

When Mikey told me this, I felt primal. I felt so filled with rage. I was literally shaking and my heart was pounding. I was ready to rip into this guy. I was ready to get up on shul bima and have it out with the entire place. Because of this one guy, I was getting so pissed at the entire congregation wondering why our shul is not always peanut free every single shabbos & kiddush the way the other shuls are. (Again taking a step back I can understand that most people may care about Coby and don't mind making small accommodations but it takes just one drop of venom to spread to and ruin the entire cup)

And it was all because this one guy opened his mouth to other kids. HOW DARE HE. Not only was this not a private conversation between this person and someone in our family; he was involving other kids in our shul and telling them to blame my Coby. I know some of the kids this man was talking to tend to 'share' things with other kids and I pictured these few children quickly complaining to all the others blaming Coby for the night.

Mikey told me to calm down as I tried to talk to him without my voice shaking. I mean, I knew in life there would be strangers that don't give a damn. I read about that person who refused not to eat nuts on a flight, ignoring the announcement, and causing a child to go into anaphylaxis. But a person who knew Coby for his entire life?! A person who knew my family for over 15 years?! We are not very close with this person (not even facebook friends) but we've had his child in our house several times and taken his child with us on outings as well. If he felt a bit pissed off, fine.... But then to spread the venom amongst the kids?!

I completely lost my appetite. I couldn't eat lunch that day (even though it was dairy and me, being the vegetarian look forward to the yom tov milchig meals). (Mikey tried to feed me some of the penne a la vodka, cute kid.)

This was my first experience with food allergy BULLYING. I read it will happen to 1 out of every 3 children with allergies. I know at times the bullying even becomes physically dangerous when kids get smeared with their allergen. I know that some children who are continually bullied are at risk for suicide. I was looking at my adorable sweet kind hearted 8 year old and my heart was breaking.

And I knew that if I can't even count on someone who has known Coby his entire life to be okay forfeiting his candy with peanuts for a total of 90 minutes to help keep my kid ALIVE and INCLUDED then what shot did Coby have in the real world? And this solidified my resolve that we MUST DO OIT.... We have to do whatever we can to protect our child!

We arrived at shul that night, and I felt like an impostor. I felt like my child and I were not wanted. Anytime anyone glanced my way, I felt like they were saying YOU RUIN EVERYTHING- WE DONT WANT YOU HERE- GET OUT! Chances are most of them weren't thinking anything of that sort, but I felt shattered. 

Candies were passed around- many were not safe for Coby. BUT not a single candy with an actual peanut was given out this year. (first time ever). So while Coby still could not eat most of the chocolate candies that were handed out, people made sure he had ample candy that was safe for him. And we didn't have to fear a touch or airborne reaction. When he danced with his friends holding their hands I didn't have to hold my breath as he then swiped at his nose. I didn't have to worry when Coby leaned over to kiss the torah that a person who had just eaten a snickers bar may have just kissed that same Torah. He was safer than he ever was! (Though did get quite upset on Simchat Torah day when he couldn't have a gooey type of candy (not chocolate) that had a 'may contain' label on it, on a whole he had a blast.)

But we didn't want to rain on everyone's parade- there was plenty of candy- dots, licorice, ring pops, wax lips, taffy, lollipops, m & ms, whoppers, heath bars, 100 grands, milky ways. We don't want to take away the kid's candies, we just want Coby to be 'safe enough' to be included.

Why was it necessary for this man to complain to the kids telling them to blame Coby that they wouldn't be getting their reeses pieces this year? Eat it at home the other 22.5 hours a day, and let my kid dance and be happy and live!

While he was physically safer than he ever was this year, I never felt like such a burden and so unwanted based on what this one person did.

*Yitz did approach this man before hakafot began and the guy tried to say 'i was only joking'.... 'it was a conversation just between me & Mikey' (not true)... 'I know it's not just coby b/c another child has an allergy too so why would i blame him' (when we know that when mikey pointed it out he dismissed the other child as not having a full allergy and turned it back on coby) He did tell Yitz that he's sorry & wouldn't do it again, but who the hell knows? And once you involve others it's too little too late.

All I know is that if someone who's known him all his life feels this way AND vocalizes it to others then what are Coby's chances?

Mikey also told me he tried to tell the guy 'we are trying to do OIT with Coby' and the man responded, 'so maybe in a few years we can get our candies back.'

Though now I have another dilemma.... I read that children on maintenance dosages can still go into anaphylaxis and at times it's brought upon by 'exercise' soon after eating their dose. So while I told Coby 'maybe a Simchat Torah in the future you won't have to worry about this and you can eat what you want'---- that would mean Coby wouldn't be able to do the dancing he had so much fun doing this year... Sigh. At least I wouldn't have to worry about Coby having an airborne or touch reaction to the peanuts that this guy and others members of the shul may want to get back into circulation.

Again, there are several people in our shul who go out of their way for us to help keep Coby safe and some reached out to wish us luck with our upcoming journey telling us we have their support and that means the world to us. Thank you to those sweet souls from the bottom of our hearts.

FARE WALK 2016

Today was our 6th annual FARE allergy walk. These walks take place all over the country where they raise millions of dollars to promote awareness and raise funds to find that cure. Every other year we were able to participate in Ridgewood's walk, a 5 minute drive away from here. But this year Ridgewood had their walk on Shabbos so we couldn't go to our local one. (And it ended up pouring on their walk- karma? ;)

Coby still really wanted to do his walk, so despite it being all the way at the Jersey shore AND on Erev Yom Tov we trekked down. It was a gam zu letova that we had to drive down- because

1. no rain!

2. couldn't ask for nicer scenery which included blue skies, the beach, palm trees

AND a whale that put on a show for us

glimpse of whale's tail going back down

3. Coby got to meet his food allergy idol- Kyle Dine the singer of his food allergy CD that he's been singing along to for years!

Kyle even called him, 'my biggest fan', gave him a special guitar pick and had him perform with him his FOOD ALLERGY ROCKS song! Here's a small clip of his 'shaking solo'. 

It was a bit chilly and windy but a nice morning despite the stupid early wake up call & long drive over on Erev Yom Tov. But it was nice to have an outing where no preparation work was necessary knowing Coby would be safe there. The treats they gave out were safe. And for him to feel like 'one of a community' where it was 'cool to have food allergies' and be included instead of feeling excluded.

The morning began with registration, getting our shirts, checking out the booths (It was so interesting that the first time ever there were no MYLAN (epipen) booths. Since Mylan hiked their price up to over 700.00 a set even though it costs about 2.00 to make FARE 'broke up' with those greedy money grubbing snakes. Yay FARE!!!! (People are actually having to choose whether to feed their families for a month or to buy their child's life saving medication) This CEO is stuffing her pockets with billions and billions of dollars not giving a damn that for people who can't afford it, she is risking the life of their child! So standing ovation to FARE & all the other organizations and famous people who broke ties with Mylan sponsorships and being their spokespeople.), hearing the announcements and hopes for the futureThroughout the area were the signs about food allergies:

This was followed by the walk itself                           and then the Kyle Dine concert

Coby asked us just the other day, "If I'm 'cured' will we still do my allergy walks?" We don't know the answer to that, but in case this was our last walk (if OIT works) we are so grateful to all who donated to support our cause in order for us to reach (and surpass) our goal!

With just 8 days to go before probably my scariest journey as a parent it's nice to know there are friends and family who care about us and will be cheering us on our way.

(and oh crap Yom Tov is just 2 hours away maybe I should cook something!)

Future fears

It is very difficult to sleep and when I wake up my stomach is in knots. I literally picture a meat grinder going at my stomach and that's what it feels like. I am so nervous. I cannot believe in just 9 days time he will begin eating his poison.

We started stock piling the epipens calling in all our renewals hoping that since we met our deductible (thanks to 31 doctor visits in one month's time due to lyme disease) the epipens won't be close to their 700.00 price it cost us last year. It is very possible that we will be needing them soon. Of course, we always carry them with us and have spare sets, but the reality is we will be feeding him the thing that tried to kill him and if the reaction progresses we will need to react quickly. (Uch but how do I know if it's 'normal reaction' or anaphylaxis when seconds count?)

When I was pregnant with Josh we took lamaze classes. When I was in labor with him and they told me to do my breathing I yelled at everyone to shove it and that breathing doesn't work! (usual shy me was not so shy that day!) After NOT using the lamaze technique in the 12 hours of labor followed by 3 hours of pushing and then an emergency c-section, nor did I need it with both Mikey & Coby being scheduled c-sections, lamaze was useless to me! But now I am struggling to remember what was taught to me 21 years ago trying to practice those breathing exercises to calm down.

For some reason I have not been able to bring myself to read the megillah of papers the doctor gave to us. Obviously I will, but my heart starts pounding everytime I glance their way.

Coby had his blood test today, his final step before the actual ingestion. He wasn't nervous at all upon going into the lab, but when she was about to do it, he clutched my arm and hid his head on my shoulder almost crying saying, "I'M SO SCARED!" That is very unlike him. He's had shots and blood tests before, and he is usually very stoic about it. Hearing his little voice tremble for the blood test broke my heart a little bit. He must realize to some degree what is coming. I've tried explaining it and talking to him about it and he eagerly waits for it all to be over (and hopefully successful) but doesn't really want to discuss the process.

Meanwhile I am still struggling if it's the right decision for him. Simchat Torah is around the corner, and every single year chocolates with peanuts and peanut butter is given out in shul. And it is terrifying. And I tell myself if OIT works, Coby will be protected from Simchat Torahs in the future, from his first kiss, from bar mitzvahs, birthday parties, airborne reactions, touch reactions, cross contamination. HE WILL BE PROTECTED (on the whole)- so how can I not try?

But.... will his treatment end up isolating him from things he would otherwise want to do in the future? He will need to be on his maintenance dose perhaps indefinitely. While part of me says, "he can go to sleep away camp if he wants...." the other part of me realizes, "wait a second, can he not go to sleep away camps? Camps are nut free- and Coby will need his dose every single day in order to remain protected and if the nurse can't stock pile it in some corner in her office so Coby can have his dose, he actually will NOT be able to go to sleep away camp after all." How ironic is that? Is the protection I am giving him going to end up isolating him in other ways? Is he going to resent me for that?

The biggest risk takers are teenagers and young adults. Most reactions and food allergy deaths happen at those ages.... what if my teenager Coby or young adult Coby decides, 'to hell with this maintenance dose' and stops taking it, and has a false sense of security thinking he wouldn't have a reaction- and then kaboom?

Is there ever a time we can truly exhale? I feel in one way or another we will be swallowed up whole by this.

Yet, how nice will it be if we can travel without these extra fears- that he can actually fly on an airplane without worries of what people around us have been eating? That if we go to Israel for his bar mitzvah, we will not have to fear a reaction (to possibly surrounding bamba) while over the ocean?  Playdates, school buses, trips, slumber parties, restaurants, simchas. We will not have to worry about an airborne reaction while walking through the supermarket (happened), or on line for a ride at Disney (happened), or from pressing his little face against a window at the airport(happened), or from walking in a hallmark store to the strong stench of the potpourri (happened). This can save his life. This can change his life. This is what we need to do right? As a mom don't I have to do whatever I can to enrich his life and to keep him safe? Yet feeding him his poison.... Can I actually go through with it?

While research and success stories are so promising, fears of the future remain. Fears of the journey remain.

Our superhero

Despite the promises of rain, it was gorgeous fall weather as we set out on our OIT journey.

AND THE JOURNEY BEGINS....

We actually ended up travelling to the further office in Monroe because they had an earlier consult day which would mean Coby would not have to miss school for this appointment. Future appointments will be a bit closer in Suffern.

Upon seeing the building Coby said, "it's not tall enough!" Coby was insisting that the building needed to be bigger in order for it to be doing such a big thing. I assured him that where we will be going from now on will be bigger (after the nurse told us so.) We very quickly fell in love with the staff there. The nurse Nicole as well as others loved the shirt he was wearing saying they have never seen such a cool shirt and asked if it's possible to get it in their size.

We were excited to find out that nurse Nicole will be with us at the Suffern office as well. And Coby fell in love with the doctor who had him cracking up when he tried to listen to his heart through his head. Getting my child (and me) comfortable in such a scary process is HUGE. Thanks doc!

We were there for nearly three hours getting our 27+ questions answered.

I admitted to him that I felt like I was 'cheating' on our Mt Sinai doctors who seemed opposed to OIT. I told him once Mt Sinai started doing clinical studies and we couldn't get Coby in we figured might as well look into it more. He told us that he attended conferences given from the doctors at Mt. Sinai and it seemed that the main reason they were opposed is because of $$$$$. They are trying to develop a peanut patch (which would still be years down the road) that would bring in billions of dollars. I read often doctors are opposed to things because of their own greed and not necessarily the best interest of the patient, yet it's still hard to trust....

He told us that he also attended conferences given by the pioneers of this down in Texas and how he sat on the information for over 4 years wondering if he can do this. Taking this on is HUGE. It means accessibility 24/7 to answer patients calls. It meant him almost doubling his staff to be able to accommodate OIT.

He sat with us as long as we needed.

....but not all my questions are answerable. There is no "set protocol", it varies person to person. If successful and Coby passes a food challenge at the end of this he'd be able to eat whatever he wants whenever he wants without even looking at labels PROVIDED he eats his maintenance dose every single day perhaps indefinitely AND he'd still have to carry his epipen BECAUSE he is still allergic AND random reactions can still occur. ARGHHHH! BUT the chances of that happening is much lower than it happening before going through OIT. On a whole he will be protected. He will be free.

I was a bit concerned when he told us that on day one he attempts to go up ONE THOUSAND times the starting dose in one day to 5MG of a peanut (which is about 1/50th of a peanut). On my own research of parents going through this I read that people who stop at less than 3MG have much less reactions going forward. And I was told by his allergist that Coby can react to 1/100th of a peanut anaphylactically. He told us that if someone were to start reacting, the lower dose before reaction becomes his at home dose- but if someone makes it through the entire day the 5MG becomes their dose. We asked if Coby does not react but we want to stop at 3MG will he allow us to do that, and he said he would but it can add months to treatment. I think I will need to research this a bit more before deciding what to do.

He didn't give us a clear answer regarding probiotics. "Do it if you want to.... can't hurt, though I'm not sure what the studies say regarding reactions..."

He told us during 'allergy months' he may put Coby on a daily dose of zyrtec so he won't have the environmental allergies adding to the food allergen which together can cause a bad reaction.

He told us some people have a very smooth road through OIT while others are extremely bumpy, but one cannot tell beforehand. He's had kids he was sure would have a horrible time sail right through and vice versa.

He wanted to do a skin test on Coby for peanuts, which no doctor has done before (we know he's very allergic, we have his blood results, so why put him through that.) He assured us that in case of reaction they are equipped to deal with it AND due to Coby's severity they would dilute the solution down to 1% of what a normal skin test would be.

Coby was very brave and didn't even flinch through all the pricks (about 11 in total), though as the seconds and minutes ticked on he was not a happy camper as he got more and more itchy. I was able to distract him from scratching and his misery by taking pictures of the faces he was making and showing them to him which made him laugh.

After just a few minutes of waiting his peanut test was growing redder and bigger by the minute. The doctor said that this was a "significant reaction" to something diluted to such a miniscule amount. 

just a few minutes into the test, it continued to redden and grow. The control is the top right.

The doctor had the nurse put lotion on it to help and then said he needed to have some benadryl too. I was a bit nervous since benadryl can 'mask' a reaction that was spreading and we have never used benadryl on him in the past. While we carry it with our epipens we wouldn't give it before an epipen. (a couple of years ago a 13 year old bit into something by accident, spit it out and was given benadryl. She felt fine for 20 minutes... then she didn't. 3 epipens later she was dead.) About a half hour after Coby took the benadryl ,

the doctor re-examined him and told the nurse to give him a dose of steroids as well and then to be observed several more minutes and we scheduled him for a blood test tomorrow as well.

He explained to us that the first part of OIT that takes several months is microscopic amounts dissolved in kool-aid that they'd provide, followed by months of a capsule that has to be compounded at an apothecary that we'd have to get, followed by actual peanuts.

And very nervously,  (while I literally asked the nurse, "will you provide ativans to the nervous parents on day one?") we scheduled Coby for his day one. Ten days from now on Halloween, when most allergy children who will be trick or treating will be doing so full of trepidation in a minefield of their poisons. Obviously we don't observe Halloween but I am filled with nerves for upcoming Simchat Torah and all the candies and chocolates that are handed out then, and I can sort of equate our Purim to their Halloween, so maybe it's appropriate Coby is beginning on that day- the start of his freedom. (though in order to get to that freedom he will have to be even more restricted for several hours each day than he already is.)

He handed us a brochure and several pages of reading material but right now I can't wrap my mind around anything more. I think I need to give myself a day to decompress before I gear up to continue. But first his blood test tomorrow afternoon for IgE component testing. Sigh this jargon is becoming as common as the back of my hand. I once again am getting an education from the school of necessity.

By the time we arrived back home I had already started a list of new questions. (like- well, if itchy lips can be a normal reaction, and throwing up can be a normal reaction- but throwing up together with itchiness can be anaphylactic reaction how do we know if it's normal(ish) things that can be anaphylactic or not? (Though the doctor did tell us they ended up epipenning a child last week who was clutching at his throat after an updose... turned out the kid had strep. better safe than sorry! Though if there's a way to learn what is necessity and what is 'normal', that would be nice since at 700.00 a pop, it would be nice not randomly flushing it down the toilet for stupidity! 

Obviously I cdon't want to be epipenning and visiting the hospital several times a week for 'annoying normalcy', but the flip side..... ARGH!!!!! HOW WILL I KNOW?????

TOO MUCH INFO..... NOT ENOUGH INFO...

But here we are back at home, and upon arriving at home there was a package waiting for us.... 

old one used to be as bright and shiny as his new one

Coby's new epi-belt. Coincidence or should I look into the symbolism of it arriving specifically today, when I ordered it three months ago? How about I just give my spent brain a rest and chalk it up to coincidence.... or not ;)