Our rough patch began when he had his anaphylactic reaction that required two epis and landed him in the hospital in Montana (this was the topic of my last blog post). Everytime I stop to think about that night I get chills and cannot believe that really happened.
Due to that reaction our doctor lowered his powder dose waaaaay down to 1/16th of what it was and built him back up to just 1/4 of his total powder dose. (one tsp powder in addition to the 9 peanuts) That should have been easy peasy right? After all most days when he did the full 4 teaspoons of powder he was fine, so how tough will a quarter of that dose be?
Erev Rosh Hashannah we were on our way to Brooklyn. Traveling in the rain through awful traffic. I already am not a big fan of Erev Rosh Hashannah--- when we are about to utter the words 'who will live, who will die,'; realizing that our fate for the next year is about to be decided.
Erev Rosh Hashannah 2001 was the last time I saw the twin towers standing.
Erev Rosh Hashannah 2007 was the day of my high risk pregnancy appointment. I had one of my sonograms and I got to see that beautifully formed baby- head, arms, legs, feet... but he wasn't moving and I was informed that despite its 'perfection' and despite having heard the heart-beat just days earlier, he was now dead inside of me. (third one in a row) I would have to carry it for several days through Rosh Hashannah before I could have that D&C. I was a human coffin that Rosh Hashannah.
So nope, not a big fan of Erev Rosh Hashannah---(sorry G-d).
This past erev Rosh Hashannah I decided to dose Coby early so we would have several hours at home before having to get in the car and drive to Brooklyn. I didn't want to risk a reaction and have another bad Erev Rosh Hashannah. He dosed early. 3 hours later we were ready to leave. About 20 minutes into the journey Coby started coughing in the back seat. I didn't think much of it but called back to Josh & Mikey, "Boys, please lift his shirt and tell me if he has hives?"
A second later they responded, "He does."
"Haha, you're joking right?"
I turned around and his entire torso was covered in hives. AND he was coughing.
I started shaking.
Again?
Now?
We pulled over to the side of the highway, in the rain, popped our trunk and started frantically searching our suitcases for his packed benadryl and steroids (I had the epi in the car). I jumped in the back seat and gave him both the benadryl and steroids. Josh went into the passenger seat and Yitz continued driving while I sat next to Coby who started scratching at his eyes and his nose and his ear was red.
I was becoming frantic. This was becoming reminiscent of what had happened just a couple of weeks earlier in Montana (the hives in Montana were huger than the ones he had at this point, but the coughing together with the hives were very scary.)
Was I going to have to actually epi him? Here? In a car? In the pouring rain? Trapped in traffic?
Where even is the nearest hospital to where we were?
Thank G-d, unlike in Montana where his coughing worsened, his throat was hurting and he couldn't speak normally, now his coughing stopped.
He still complained about an itchy eye and the hives had not started to fade, but once his throat was clear I was much calmer. Eventually his itchiness went away and the hives began to fade. I continued to observe him because an allergic reaction can come back and be even worse.
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| Sitting next to Coby on the way to Brooklyn |
The next two days he dosed at his regular time and was completely fine.
The following day I decided to dose him at noon which would give us NINE hours before having to get back in the car. Again, he was completely fine.
The following day we were watching tv 3 hours after dosing & I noticed Coby scratching himself. We lifted his shirt and AGAIN hives all over.
What the hell was happening????
We gave him benadryl and steroids and paged the doctor.
The doctor told us we again need to go back to square one on the powder. Have him on 1/4 tsp for several days, then have him on half a teaspoon for several days and then call him. HOW FRUSTRATING!!! Earlier in the year we had spent several months building his powder up to his full dose of 4 teaspoons and now we were having trouble at just 1 teaspoon?
"Why is this happening?"
"We don't know. We don't have all the answers. OIT works until it doesn't."
OIT WORKS UNTIL IT DOESN'T?
WHAT THE HELL???
I know the doctor simply means that they don't have all the answers as to why some people sail through maintenance with no issues, others can be fine for months and then may hit bumps. Or why some barely need a rest period at all while for others a 4 hour rest period doesn't seem to be enough. They just don't have all the answers.
But his words continue to haunt me.
In just two weeks time Coby had a very serious reaction and then the start of what could have been a serious reaction and then a reaction of widespread hives?! (And 2 of those times it was at the one teaspoon dose, why?!!!)
WHAT AM I DOING THIS FOR?
I'm not going to lie. I have a lot of mommy's guilt. After all in a large way Coby had his anaphylactic reaction because of me. I was trying to avoid a bad reaction and time was running out in which I could dose him 'safely' (so I thought), so I shoved it in his mouth on the side of a highway (if you are confused about this, then just read my last post), and those conditions ended up CAUSING the exact thing I was trying to avoid. That which I feared I created. Way to go me.
Cue to the memory of me feeding him two goobers at age 2 and a half (not then knowing he was allergic) and him having such a bad reaction that his doctor still to this day tells me, "I didn't think he'd make it through the night."
Great job mama.
Each day I am purposely feeding him his poison and for what?
Maybe if we never did OIT he would have been fine and have had NO reactions these past two years. Instead he ended up having several. (most of them just hives).
Sure if we didn't OIT, it would continue to mean a life of exclusion, less travel, no celebrations with family, no birthday parties, no playdates, no restaurants, back to reading labels and his life of NO NO NO NO NO but still....
...after the couple of weeks we had I can't help but beat myself up about this whole OIT thing.
And then this past week I about read three different cases of severe allergy food bullying, which unfortunately is not that uncommon (1 out of 3 children with allergies will be bullied).
1. ELEMENTARY school kids smeared peanut butter all over the 'peanut free' table in the lunchroom. ELEMENTARY SCHOOL KIDS!
2. Peanut butter was smeared on the allergic boy's items and caused him to have a reaction
3. The most heart-breaking one- a 13 year old was chased down by a kid with a piece of cheese and said kid shoved the piece of cheese down the boy's shirt. The boy DIED. Yes, DIED.
These all reminded me of some of the most important reasons why we chose to do OIT. While at times the hours following his dosing can be scary, he no longer has to fear the outside world. He is 100% included in all activities, can do whatever he wants, can eat whatever he wants, can go where-ever he wants. He does not have to fear one wrong bite. He does not have to fear those bullies having the power to terrorize and ultimately kill him.
Yesterday he came home from school all excited, "Mom, my principal said there may be a 5th grade Shabbaton- and I can go!!!!" Yep, he did OIT he gets to go!
I am trying to ignore the little voice in my head that is telling me, 'if he goes, he will have to skip dosing 2 days in a row, so what will happen that 3rd day when he goes back to dosing.' I know our doctor will walk us through it and Coby will have a fantastic time.
And with the holidays once again upon us, Coby gets to go to shul and eat whatever is served at the kiddush. He gets to go on the sukkah hop and eat whatever he wants there. He gets to go to shul on Simchat Torah and collect and eat whatever chocolates and candies he wants. We don't have to fear his safety on the holidays anymore.
I am trying to remind myself of all that he has gained from doing OIT and shut up that voice that at times beats me up for it.
We are now back up at half a teaspoon of powder until Wednesday when we call the doctor as to how to proceed. I'm hoping for a smoother ride in the coming weeks and months than the last few weeks have been. Honestly, while I know he is now safe out in the real world, it breaks my heart that it is now with me he may not be safe since it is I who doses him each day.
I am very thankful that although this momma's guilt has been weighing heavily on me lately that Coby does not fear the act of dosing AT ALL nor does he fear a reaction despite what has happened lately. All he sees are the positives that came from it and all that he has gained from it. His cup is more than half full. His cup overflows!
I need to take a lesson from my son.
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