FIGHT SONG

-Princess Bride

and we are about to try to do that very same thing with Coby’s poison.

Unless someone is living with a child with life threatening food allergies, there is no way they can understand how much life needs to be compromised to keep your child safe how it really does take a village…

People scoff at you and roll their eyes at you and sometimes behind your back. “Be grateful your child doesn’t have an illness,”- well duh, though if that illness had a cure you may want to trade the allergy for the illness with the cure. Death is death. One wrong bite, one mistake…. You have to put your child out there in the big scary world entrusting him to people who may not possibly get it. Mistakes are made. “So avoid the damn peanut,” is said/thought. If only it were that easy. Many reactions are not from the actual peanut at all, rather from cross contamination- perhaps the counter the ‘safe’ food was put had remnants of his allergen. Maybe the knife used to spread the safe margarine on the safe bread wasn’t completely washed from what it used last. Perhaps the safe bread is not safe at all if the bakery isn’t safe. Perhaps if we could trust labels but we can’t. Perhaps if we didn’t find it hiding in things like orange juice!!! Canned vegetables!!! 

Pretzels, even lollipops. The countless ‘safe’ food recalls making you realize you can never be sure something is REALLY and TRULY 100% safe) It is so easy to screw up with the price being too great to pay. Yet allergies continue to remain a source of comedy on tv. One in three children is being bullied because of them. People want these children to live in a bubble so as not to impinge on their right to eat nuts on the 2 hour flight. Basically our children’s right to a childhood and right to breathe is not as important as someone’s right to eat nuts for those 2 hours. We parents of these children have even heard comments to the extent of, “if that can kill him maybe he shouldn’t be here- heard of the process of survival of the fittest?” And this is the world we have to send our children into.

It’s not ‘IF there will be another reaction’, rather ‘WHEN there will be another reaction.’ 

Annual allergy walks don’t get as much support as do walks for actual diseases partially for the aforementioned reasons. It’s an invisible disability…. Until it is not. The time inevitably comes when you hear your child struggling to breathe as his mouth continues to swell and hives begin covering his entire body from head to toe, as he becomes listless in your arms as his blood pressure plummets. But people don’t get it. We need to rely on those people to keep that child safe, but they. don’t.get. it. We walk to raise awareness for those suffering with these life changing and life threatening disabilities. We walk to raise money for a cure.

Our first 5K- 2011

allergy walk 2012

allergy walk 2013

practicing epipen use allergy walk 2014

allergy walk 2015

This year's walk is on Oct. 23rd, if you wish to contribute to our cause please go to Coby's page at: http://www.foodallergywalk.org/faf/donorReg/donorPledge.asp?ievent=1157566&supid=374461055

No one knows why allergy rates are climbing. All the hypotheses that are out there- the antibiotic one, the eating nuts when pregnant or not, the cleanliness theory… why is my child suffering with this? Is it because of me? Is it because he was a caesarean? Is it a result of all the fertility treatments? Was it all the antibiotics he was on for his chronic ear and respiratory infections he had? Is it because I ate peanut butter when I was pregnant and nursing- trying to get some nutrients to my baby, being the vegetarian who barely eats protein? Is it because we cleaned our house too well before he was born? Replacing the air conditioning unit and cleaning out our ducts? Did I cause this? Did all I go through to create and protect my child end up hurting him? Could I have prevented it? The guilt…. How can I protect him now?

When they are little, they are in your bubble. Your house is safe for them. (you think- you hope) You shop for them. You read labels. You research schools and camps and vacations and outings. You avoid trips to stores that have potpourri out due to previous airborne reactions. You travel very carefully picking certain airlines over others, packing 12 epipens with you ‘just in case’ and still worry.

Most play-dates cannot happen. Most birthday parties are skipped. Restaurants avoided. Is sleep away camp ever a possibility? How will he do bar mitzvahs? College? But forget the future, no need to look so far ahead to have worries. Everything is scary. Playgrounds become a minefield with danger lurking around every corner. You use every opportunity to teach your child how to safe- buying him books, reading labels, sorting through shalach manot. 

His favorite 'allergy' book when he was little.

1st allergy bracelet

Shalach manot lessons

Another year of Purim with various shalach manots of 'poison'.

Before going to shul you remind your child ‘not to eat anything unless we give you permission,’ keeping the phone in your pocket (that you got a heter for) just in case you need to call 911 since every second counts. Walking through a supermarket has caused airborne reactions. Leaning his face against a window at the airport caused hives to spread. But those were the easy reactions… after all- you never forget the night you were moments away from losing your child forever.

Years later the doctor is still reminding you how she didn’t think your child would make it through that night.

As your child gets older he leaves your bubble. Teens are risk takers, they do what their friends are doing. Who wants to carry a bulky epipen with them? They want to go where their friends are going and eat what their friends are eating without calling attention to themselves. Most food allergy related deaths happen at those ages. A teenager recently died after kissing her boyfriend- her boyfriend had eaten peanuts a few hours earlier and it killed the girl with the food allergy. If only it were as easy as avoiding the simple peanut- but it’s not so simple- it lurks everywhere. It hides everywhere. "One way or another I’m gonna find ya, I’m gonna getcha getcha getcha getcha- one way or another…. "

As a parent you want to do everything you can to protect your child. Every day you send them off to school a piece of you worries. Your happiest moment of the day is when he comes running back into your arms. Until you live it, you can’t understand it.

Coby is beginning to feel some of the burdens of hsi allergy now. While he is so good at remembering to wear his epibelt before leaving the house he also comments how it bounces around and loosens up when he is trying to play in gym. When someone asks him what it is, he doesn’t want to tell him, despite me encouraging him to. He sees things other kids are eating and asks why he can’t have it. "But it looks so yummy mommy." We do what we can- we bought an ice cream maker to make safe ice-cream.

We try to copy the unsafe foods he sees to create a safe version for him. We teach him how to read labels and advocate for himself.

Years ago we started researching OIT (oral immunotherapy), a controversial treatment that has been around a few years. The closest place to us that did this would be a 6-7 hour roundtrip drive- weekly, costing thousands of dollars. If we knew it would work of course we would do it---- but our doctors said not to---- ‘it’s too new’, ‘he’s too young’, ‘we don’t know the long term effects.’ ‘it’s a painful process.’ We tried getting him into the clinical trials at Mt. Sinai- but he didn’t make the cut- too many applicants, (plus who’s to say he’d even get the real thing and not the placebo?) But now…. There’s a place in Long Island, and a place in Suffern, and a place right here in Teaneck. Coby is now eight years old and so much more verbal and cognizant of how he feels. True he pronounces ‘anaphylaxis’ as ‘cocofixitis’ but he now realizes that if he carries epipens to help save his life… that means this allergy can actually end his life- and by something as small as 1/100th of a peanut. I am never going to forget the look on his face when he came upon the realization that this can actually kill him…
Is there really possibly a way we can make his life easier and potentially save his life? These places now take insurance, and they are so much more local- how can we not at least explore? Too many parents have lost their children with hindsight to a possible treatment being 20-20, but you can’t turn back the clock. I have to look at the future and see how scary it can be and do something NOW.

They would start with something as small as 1/1 millionth of a peanut- a grain so miniscule and dissolved in liquid. They would keep raising the dose until Coby would start having a reaction. (Yes, the initial goal is to get my kid to react, and you just have to hope it’s a minor reaction and not one that sends him into anaphylactic shock.) The last dose before the reaction would be his maintenance dose, and we would continue watch him and hope the reaction does not progress to anaphylaxis. If all ends well enough, we would be sent home with that maintenance dose and every evening at the same time, with a full meal we’d give him that dose, making sure for one hour beforehand and 2 hours afterwards- no exercise or warm baths. Exercise and heat brings on anaphylaxis. It would be TV time. It would be “DON’T MOVE!” time. It would be watch like a hawk time. If a reaction were to occur it should be within a couple of hours, though some have been noted as late as 10 hours later, so we’d be sleeping with a baby monitor.

Studies show that the risk of a serious reaction from OIT is LESS likely than a reaction in everyday life. Every week or two Coby would return to this place to have a single ‘updose’ with that dose again being given every day at home until the next appointment. Eventually these specks of molecules dissolved in liquid, will then be actual crumbs of the peanut to actual full peanuts taking anywhere from 4 months to as much as two years to complete. They claim this treatment towards desensitization (NOT a cure) is 80-90% successful. A small percentage of kids can develop a chronic disease of the esophagus from this treatment. Many of those who started the treatment drop out because of the side effects being too painful…. As their body tries to acclimate to this ‘poison’ it fights- horrible stomach aches, cramps, vomiting- to the degree of having to miss school at times. Can I actually put my child through this? But it could be saving his life. Those who went through the treatment admit that it was hell, but the end is bliss. No more worries of cross contamination, no more airborne reactions, no more touch reactions. No more of ‘one mistake, one wrong bite can kill.’ FREEDOM. Sleepovers, playdates, riding on a school bus, travel, restaurants, camps, college. The weight will have been lifted off. But he still will need to take his epipen everywhere- (but perhaps it can stay in his backpack instead of on his person.) Why? Because still this is NOT a cure. As long as he continues his ‘graduation dose’ indefinitely he should be fine…. But if he forgets the dose for a little bit of time- is it one day? Three days? One week? It comes back with a vengeance. Random reactions can still occur. A full cure would mean whenever one were to eat the food without it mattering when you last ate it there is no reaction. A cure would mean he’d no longer need to carry an epipen (though honestly I don’t know if I’ll ever be comfortable enough not having an epipen) A cure would mean no more reactions. So this is not a cure. It's not a cure but it’s a something....

We already spoke with our Rabbi and got the heter to feed him the peanuts over Pesach (already thinking 6 months into the future), but- can I, his mommy, he- my heart- actually do this? Can I actually feed my child the poison that has tried to kill him knowing that the best case scenario is that he will be in pretty severe physical pain at times? When I approached someone asking her what kind of mom would I be that I’m even considering this? Her reply was, “how can you not consider this? How can you not do this? I would do it in a heartbeat. This is potentially saving the life of your child and changing the life he has for the better- how can you consider not doing it?” 
The “what ifs" are terrifying, but so are the "what if I don’ts”. But right now I just want to grab my Coby-bear and hide in our ‘safe’ little bubble. The idea of this appointment has my heart pounding and my body shaking. Every day we are calling the doctor back with more questions. We are scheduled for our consultation 2 days after Rosh Hashanna***, and we are scheduled to begin this on October 20th, chol Hamoed Sukkot- his eight hour appointment to begin feeding him his poison- just 3 days before his allergy walk.  Are we strong enough to do this? How bad will this be on my baby? How will we get through the next few months/couple of years? Are we brave enough? Will we be the 80-90% of those who graduate? How much pain will come with it? Will this cause anaphylaxis? One time, twice, more? Will we be the 10-20% who can’t manage it at all? Will he develop another illness due to this treatment? Together we watched a video of children who went through this and graduated and had their first ice cream from an ice cream store, who were holding m&ms in their hand who bravely took each dose of the treatment and the song that was playing during this slideshow was “fight song”.

"This is my fight song.

Take back my life song.

 Prove I'm alright song.

My power's turned on.

Starting right now I'll be strong.

 I'll play my fight song.

And I don't really care if nobody else believes

'Cause I've still got a lot of fight left in me."

I don’t think I will ever be able to hear that song without tears welling up again. I have to poison my baby. It will hurt my baby. It’s to save my baby. It’s to give him his life back. Please let us be strong enough…

Meanwhile Coby has told us he is not giving up on this. He will not drop out. He will stick with it until the end….. and he wants an ice-cream cake from an actual ice cream store for his 9th birthday. From your mouth to G-d’s ears my love…. 

***Since writing this the Teaneck place said they have to cancel our appointments until January- perhaps this is a gam zu letova, as I wasn’t feeling too comfortable with them anyway- instead we are going to a highly recommended place in Suffern. The con is the drive, otherwise all pros. His 2 hour consult is November 4^th and they said they’d be ready to start the 8 hour appointment as soon as they get insurance clearance which usually just takes a few days.