Yes, I know we only just begun but it SUCKS!!!
It is impossible!
I don't think it is supposed to be like this but the guy from our compounding pharmacy is just not calling us back.
Our doctors use a compounding place near their office but it would have been nearly impossible to get there before they close.
So we found a place in Teaneck that does it so we brought over the peanut powder our doctor gave us and picked up the capsules a week later. Last week, as mentioned in another post, first the doctor tried to open the capsule and it shattered. Then I tried pill number two and same story. She was able to do capsule three after a lot of time and effort and said, "I never ever saw anything like this happen before."
The following day we were able to get through to our guy to complain and he also stated, "That never happened before."
Which made me think that perhaps they screwed up and packed our powder into the wrong 'shell'.
The pictures of capsules other people in the OIT group posted did not look like my capsules.
In fact Yitz had even told the apothecary to make the doses color coded (which is what they usually do anyway) so we wouldn't mix them up but every single capsule we received is WHITE.
Yitz tried to get those damn things open and realized how close to impossible it is. He tried to call our guy back several times since Friday.
We cannot get through to them.
They claim that "James" is the only one who is able to compound peanuts and he wasn't going to be in again until the following Wednesday. We asked them to reach out to him so he can call us back. They said 'okay', but James never did call us back.
Now this isn't some 'silly or simple' medicine like a tylenol or a tum. This is a vital piece of Coby's treatment that took 5 months to get to!
We have very limited capsules and if we run out we are screwed.
If Coby eats a piece of the shattered shell and it cuts his throat as he swallows (which was our doctor's fear) it can cause a bad allergic reaction. (It would mean his allergen gets directly into his blood stream which his body cannot yet handle. In fact we were even warned that if Coby even loses a tooth we have to be very careful about dosing since a small open wound would be in his mouth.)
If some of the 'peanut dust' goes flying which tends to happen when the shell gets cracked and I don't get a complete dose into him, that is bad.
How could the pharmacy be so negligent and unreachable for so many days when they should understand how vital it is to rectify this??????
After school today I tried to get that damn thing open and it shattered right away. The good news is I was able to hold most of the shell in my hand and only one small piece fell into the pudding. (Yes we bought Coby his requested chocolate pudding he wanted to dose with- he said it makes it taste 'a medium amount better.')
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| peanut flour in chocolate pudding |
So Yitz has been calling the apothecary again and again. Now they told him, 'we used some of your leftover peanut flour' and made 7 more capsules for week 1 and 7 more for week 2. You can come and pick it up.'
THAT MAKES NO SENSE.
Because according to them James is the only guy who is able to do this type of compounding and according to them James was not going to be in again until Wednesday. So who is that magic person who all of a sudden learned the art of compounding peanuts?
And why were they holding on to our leftover peanut powder?
And why the hell would they do anything without calling us back first? They made 7 more week 1s? If all goes well, I only need 2 more for week 1- and we wouldn't even be able to pick them up until Friday--- so we need NO MORE WEEK 1s. THEY FRIGGIN WASTED OUR PRECIOUS POWDER!
WE NEED WEEK 2, 3 and 4!
How could this place be so unreachable and irresponsible? I'm kicking myself for not making the pharmacy local to our doctor work in one way or another. Today I did tell Yitz to pick up more peanut flour from our doctor and to just go to their local pharmacy they use up there so I have the proper capsules before updosing on Thursday.... but he said he can't because the local pharmacy that will still be open by the time he leaves is an additional hour out of the way AND he'd have to do it two times (drop off and pick up... since it is very time consuming and tedious they cannot do it while we wait.)
ARGH!!!!
I posted on my OIT group if being unable to get those damn things open without it shattering and splintering is normal and was told "NO! That is not normal, it should be relatively easy to get the two halves apart without them shattering".
They said it should not shatter.
They said it should come apart relatively easily. (One person said hers did shatter and it turned out her place gave her the wrong shells and in fact didn't even put the right amount into each one. Crap!!!)
They asked me if it's possible to 'tap tap' the powder to one end of the capsule and cut the other end of it and pour the powder out. (That sounds interesting, but I do not know how full each capsule is and a scissor can go through some of the powder making us lose some and make it unhygienic as well! 'm also afraid that trying a scissor would just splinter the capsule like it already does when I try to get the two halves apart.)
One person asked me if it's possible to melt one side of the capsule with a curling iron and dump it out. WHAT?! (She did say she didn't know if that would even be possible, she was just trying to think creatively).
Another person said I can order it to be shipped from Sarasota Florida from a compounding place, but I don't have the time to ship them powder and wait for them to ship it back, since we need it now every single day.
Another person said she already did OIT for three different foods and never had any of her capsules shatter a single time.
Somehow we have to make it through to updose on Thursday and get these damn capsules fixed.
They suck!!!
James is in on Wednesday- so maybe finally Yitz can speak to him?
This is ridiculous.
If James would even admit to his mistake (unless it is me, and everyone else who already dealt with the capsule stage, who is completely wrong) How would we even do it? They used up our powder making week 1s. I have a tiny bit more powder at home to make a few capsules... but either our doctor on Thursday would have to give me a whole bunch more powder that Yitz would drop off Friday and then still have to wait several days to pick up the new batches. OR. They'd have to open every single capsule they already compounded for us to pull out all the powder (and good luck with it not shattering in the process) and we'd still have to somehow manage dosing Coby each day until we get the new ones.
I am so frustrated!!!!
I had originally thought capsule stage would be exciting and in a way freeing. No more coolers. No more glass jars. No more syringes.
But---- Argh. It is so much worse. As scared as I am about stage 3 which is actual peanuts, I am so done with stage 2. Bring on those peanuts!!!
Please please please let's have no reactions during the capsule stage, and no snowstorms and no illness- all of which would cause us to lose at least a week of progress. I cannot stay in this capsule stage a moment more than is absolutely necessary.
IT SUCKS! (Did I say that already?)
Coby on the other hand looooooves everything about OIT. At parent teacher conferences this weekend, his teacher told us how he talks about OIT all the time and is so excited about it. In fact just today as he was playing on the computer he burst into song.
And if anyone is wondering, I did NOT have an OIT nightmare last night! I only dreamed that I was outside in the backyard as I watched a plane get lower and lower about to crash into my next door neighbor's roof. White plane. Light blue writing on it. But hey, at least it wasn't about peanuts!
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