But I remind myself that one never knows when a reaction will occur. In fact just today I read about two kids in my OIT group who had smooth sailing all the way until actual peanuts- and then boom. Anaphylaxis. One child was fine at one peanut but anaphylaxis at two. Another child had no problems all the way through 5 peanuts and then 6 peanuts sent him to the hospital. Even if that kid would get 'stuck' on the 5 peanut dose- that in and of itself is HUGE. 5 peanuts means they are sooooo much safer now than they were when they started. 5 peanuts means they are cleared to eat items that may be cross contaminated. That's not to say these kids won't make it to graduation. The kids will 'simply' down-dose back to 5 peanuts and stay on 5 for an extra few weeks to give their body extra time to acclimate and then try 6 again at a later point. This happens time and time again.
Look how far Coby already came. He started having a reaction on day 1 at the 1/3,000th dose and now he's doing okay on 1/7th. INCREDIBLE!
In the car today we were discussing this 'war' he is fighting and he commented, "There are soooooo many peanuts in the peanut army- but I'm only one person fighting all of them. That's not fair!" I reminded him that he has sooooo many people who are rooting for him and are supporting him and believe in him and he's NOT all by himself. But yeah, his comment broke my heart a little.
This treatment is an exciting one but a draining one. A time consuming one. A frightening one. A hopeful one. Coby has been so positive about it 99 percent of the time, but occasionally he says something that shows me how layered his feelings about this really are.
So why bother?
Why bother with the risks? The 3 hours (if all goes well) it consumes each day (One hour pre-dosing of starting to take it easy, no showering followed by dosing and 2 hours of observation, no exercising or bathing.), the weekly (if lucky) appointments up in Suffern, the several months this treatment will take followed by a possible daily commitment of dosing and following the resting/showering restrictions for the rest of his life.
Why do this?
Easiest answer.
To save his life.
While there are so many reasons, big and small, for going through this treatment, we were reminded of the bigger reason just today. A college student with a peanut allergy was hazed into a fraternity. How? They shmeared peanut butter on his swelling face as he lay there unconscious. Those kids should be charged with attempted murder.
http://www.clickondetroit.com/news/cmu-student-with-peanut-allergy-hazed-with-peanut-butter-while-passed-out-mother-says
Why OIT?
Assholes.
Bullies.
Even younger kids with a peanut allergy are teased and taunted sometimes verbally, sometimes physically and sometimes having their allergen shoved in their face.
Unfortunately this is not the first time I read a story like the one above.
Not only is OIT most successful on a younger child as opposed to a tween or a teenager, but we also got to do this before those years start: bar mitzvahs, sleep away camp, boyfriend/girlfriend years (where a kiss has the potential to kill- it has actually happened), college years....
So why OIT?
The biggest and most important reason is obviously to keep him safe. It's not about IF there will be another reaction rather WHEN, so we need to keep our Coby-bear safe.
That reason trumps all the others 'little reasons' like missed play-dates and birthday parties and simchas and vacation problems and restaurants and day- trip problems- but all of those 'little' reasons are what gives childhood its innocence. Like grabbing an ice-cream cone from the ice cream store--- stuff I took for granted for Josh and Mikey, not realizing what we had, until we didn't....
Coby is really hoping for that eventual ice-cream cake in his future!
Yesterday Coby came home with a little bag of treats- hershey kisses and marshmallows his teacher gave out in honor of her birthday.
He really wanted to eat the marshmallows. He BEGGED me. But the rule is no label- no eat. "This day just keeps getting worse and worse!" Sigh. Are the marshmallows probably safe? Perhaps. Is there zero risk of cross contamination? No. Am I willing to play russian roulette. No. I promised him an entire bag of mini marshmallows, one where we can clearly read the label, on our next shopping trip. He was not appeased. He wanted the same treat everybody else in his class was given. I am grateful he did not eat it in school and brought it home to show me. I am sad that he went to bed feeling so upset about some damn marshmallows. I am sooooo hopeful that OIT works so once again damn marshmallows will become a 'little thing' as opposed to something that is nearly reducing my child to tears.
It may be the 'little' things but those little things are huge. Those little things run the gamut from inclusion in classroom parties all the way to being safe from bullying. These little things are what currently ends up excluding him. I still get upset each time I think about the adult in shul on Simchat Torah who went around telling kids to blame Coby if the candies being given out that night weren't the 'good ones'. Even when most people tried to include Coby that evening, one man went out of his way to get the other kids mad at my little one. Inclusion still comes at a price.
Assholes.
Bullies.
Purim is just ten days away now. We have a love/hate relationship with this holiday. Used to love it--- the dressing up- seeing family and friends..... until Coby had his anaphylactic reaction to an item in shalach manot. Every Purim since then brings much anxiety to us. Inevitably we receive shalach manot that are mine-fields for Coby. Peanut butter cups, butterfingers, paydays and bunches of cross contaminated items. We sift through it WITH Coby, teaching him how to read a label and what to do if something is not safe. He becomes educated and sees that we will always keep a safe home for him and remove all unsafe and questionable items out of the house. He feels loved. He feels safe. But he also feels sad when he sees all the items that look soooo yummy but are poison to him.
Today I told him, "Coby if OIT works- this may be the last Purim we will have to sift through all that Shalach Manot. Next Purim- you may be able to have anything you want from those bags!"
Coby FREAKED OUT! Well to the extent that being buckled into your booster seat allows you freak out. He threw his hat around and began waving his arms and legs and shouting. He was nearly as excited as when we told him we were on the way to Disney world.
Pix of Coby reaction when I told him this may be the last Purim we have
to scrutinize everything and next year all may be safe for him!
What can I say, a picture really does speak a thousand words!
So why OIT?
The big things.
The little things.
Because sometimes it is the little things that mean the most, especially in the eyes of an 8 year old boy. And in the eyes of his mama as well....
No comments:
Post a Comment