So today is just a dreary bleary icky Thursday afternoon. It's depressing that after so much momentum we had to slow down a bit. We decided that the right thing to do was to give Coby's body an extra week to get used to the dose he was having problems with. In the grand scheme of things, one week is nothing. Our goal is to get to that finish line even if it may take a bit longer than we had hoped, and not to have to drop out of this treatment. If we had tried to rush it, it could have kicked us in the butt.
I still question whether the apothecary screwed up our pills in more ways than one.
We already know he did not know how to color code the different capsules and instead gave two doses the same colors.
We already know he packed different doses into the same exact size shell--- both the 100mg and 250mgs were the same exact color and same exact size.
And now I question if he even put the pills into their proper bottles.
Why is that now a concern of mine?
Both of the pictures below supposedly have 250mg of peanut flour... but to me the one on the right looks like it is holding way more than the one on the left. The one on the right is what we up-dosed with last Thursday---- the one that caused all those reactions. It was one of our capsules that came out of the 250mg marked bottle, but....
When I saw how little the home dose capsules held (to my own eyes) in comparison to the capsule we used at the doctor's, I worried that all the home doses I was giving to Coby was LESS than what I was supposed to be giving him. I worried that if I was accidentally dosing him with 100mgs at home (DESPITE it being in the 250mg labeled bottle) that I was losing weeks of progress and if that indeed was the case and our next up-dose goes all the way up to 500mg- I would inadvertently have ended up causing a reaction resulting from too big of a jump. After all the shells of both the 250 and the 100s were identical.
Sigh.
Oh my gosh, I need a break.
But of course cannot get one.
So we purchased a scale that arrived today and I went ahead and weighed EVERY SINGLE CAPSULE that we have left in the house, including doses we are done with.
The 100mg capsules came in at .2
BOTH the 175 and the 250s weighed .3I figure the same weight must be because for some reason the pharmacist put the 175s is BIGGER shells than the 100s and the 250s. WHY? I just don't know....
And our final capsules of 500mg came weighing in at .6
I feel much better knowing that each pill weighs the same as all the other capsules in its bottle. I do not feel good knowing that 175 and 250 weigh the same, but I am okayish enough knowing the capsule shells of those two doses are different sizes so that is probably why the weight is the same.
So what's with the picture of the powders above?
I guess it it is just my brain and eyes playing tricks on me, or perhaps one capsule of the 500 size accidentally made its way into the 250 bottle?
I don't know.
I knew OIT would be stressful and anxiety-ridden, but I didn't think all these extra stressors would be coming into play. Second guessing everything. Questioning those I am supposed to be able to trust.
Sigh.
I sooooo wanted to be able to up-dose to our final capsule size today and be done with the capsule stage of OIT. But alas, (who says that--- 'alas'?), we are not.
It is a bit depressing that we cannot trudge ahead today. I guess that we were lucky enough to have many boring OIT weeks in a row so maybe it was just our time to hit a bit of a snag. As the doctor said, this week we have the physical evidence that his body is recognizing that its allergen is in there and it is fighting it.
We do know how important it is to keep on chugging.
The food allergy world is a scary one. Yesterday caring friends forwarded me the warning about Oberlander's. Many people ended up in the hospital having a reaction to a Pesach item. Oberlander's is a nut free bakery throughout the year, but apparently is not nut-free over Pesach. (Though why anyone would eat Pesach cake BEFORE you absolutely need to is beyond me!)
"May contain nuts" listed on baking powder. Lovely. His poison hides EVERYWHERE. And so we are fighting our way out of this nonsense. One dose at a time.
And despite this week being an anxiety ridden one, we actually did have a couple of "OIT wins" this past week.
This is going to sound ridiculous--- but we took Coby Pesach shopping with us!!!! We took him to Shop-rite. The last time I took him to shop-rite was more than five years ago when he ended up having an air-borne reaction when walking past a bin of peanuts. We got out of there quickly and I hadn't brought him back. But this past Sunday, we did. We ventured back out to Shop-rite together. While we didn't go out of our way looking for that bin of peanuts to test his airborne sensitivity, and while we still did remind Coby, "do not touch your face" (in case he were to touch a cart or something that someone else touched with peanut residuey fingers, we didnt want him bringing about a reaction that way) we went in to the store with fear barely registering!
Coby had a BLAST!
Yes, you read that correctly. He said that was the funnest part of his week! While most of us dread shopping, especially Pesach shopping when a single week of food can easily cost close to a thousand dollars, to a little boy who has not been able to go into a supermarket for most of his life, it was simply amazing.
Everything is relative my friends.
Another OIT win--- is Coby had an Entenmann's donut. He even exclaimed, "that was the best thing I ever tasted in my entire life!!" Now, we do not allow Entenmann's into our home (yet).
The ingredients of most items do not list nuts, but when we called the facility we were told they do have nuts in the factory. I also heard about several kids having reactions to Entenmann's items because of that risk of cross contamination.
So why did Coby have an Entenmann's donut?
Coby had pajama day in school. I found out later that with pajamas come donuts. The teachers didn't do anything wrong--- they read the ingredients, no nuts were listed and they told Coby it was safe for him to eat. And so he did. Coby relished it. When Coby told me about it afterwards, my heart did do a tiny skip, but hearing this did not send me into a complete spiral as it would have just a few months ago. I am still not comfortable bringing it into my home but hopefully in just a few weeks we will be able to... and until then when Coby still tells me how delicious this donut was- instead of the sheer panic that I used to feel, a larger part of me feels happiness for him.
So despite the dosing scare and reality check that hit us kind of hard this week- we still look towards the future with optimism.
In fact, yesterday, for the very first time this week, Coby's body had NO side effects to this 250mg dose!!! For the first time since last Thursday I was able to write a big fat zero under the "reaction column" in his dosing journal that his doctor has us fill out.
And I'm just starting to be a bit more chill dosing Coby at this level.
IYH by not up-dosing today, the next week of remaining at 250mg will go smoothly and his body will be ready for the next up-dose of 500mg. 500mg is equivalent to more than an entire peanut!
Oh my gosh.
Oh my gosh.
Okay I think I have to talk myself off the ledge right now and just deal with the here and now of 250 and not think ahead to what is coming....
.... and for those of you who may be wondering--- no, we still did not open the peanuts we ordered.
It continues to remain sealed in that amazon box.
One of these days...
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