We've had issues with medications and pharmacies and the like before. This one takes the cake.
Vigabatrin is called Sabril here in the United States. It's a serious medicine. Doctors don't keep samples in their drawers of it (I don't think), there's a national registry, papers to sign, eye exams every three months, and so on. So I can't just go and pick it up at our local pharmacy, it has to be mail ordered. I hate mail ordered anything because, in my opinion, there is just too much room for error. In this case my opinion would be correct.
About three weeks ago I spoke with our new mail order pharmacy about Sabril. They asked how much I had left and assured me our delivery would be at our doorstep within days. Great. We had a good two weeks worth of meds so it was all good. We went to LA for a week, we moved for a week, and Christian finally ran out of his medication. So, believing what the pharmacy told me, I went back to our old house to locate the delivery of our package. Yeah, it wasn't there.
I call the pharmacy. It seems the message never made it over to the pharmacy. Sorry, ma'am. We'll have it out tomorrow, it'll be overnighted.
Sorry? This isn't an order from Old Navy for clothes!!! This is a medication that explicitly states NOT to abruptly stop taking it! I don't understand the cavalier attitude from pharmacies who are unapologetically incompetent. I don't understand it. This is quality of life...wait, no, this is LIFE we are talking about here.
So Christian was off his Vigabatrin/Sabril for two days. The first day was no big deal. But he grew increasingly irritable. The second day brought some funny behavior. Christian started having what I believe were seizures I had never seen before. He cried and cried. He couldn't rest, he was uncomfortable, it was awful. Remember the swallow study? Right smack in the middle of day two. It got worse.
As soon as the situation went down I called the neuro and let his assistant know that we'd be taking Christian into the ER if we saw anything concerning. He sent a prescription over to our pharmacy for Clonazepam as sort of a rescue med if we saw anything. As the second day was getting worse, I decided to go pick up the medication. Oh, guess what, the pharmacy doesn't have any. They had been trying to order it for two days and can't get a hold of anything. Furthermore, none of the pharmacies in the entire northwest Tucson have any either! Except for Costco, which closes in 10 minutes so the prescription won't be filled in time.
Are. You. Kidding. Me?
It was so ridiculous, I couldn't even get mad. I was actually kind of in shock about the whole thing.
We hung in there. Christian probably had a lot of seizures that night. He wouldn't sleep. He probably slept about 4 hours out of a 24 hour period. It started to get a little scary. At about three in the morning on Thursday I decided I was taking him to the ER but I'd try one last thing to get him to rest - bring him into Mommy and Daddy's bed. The little stinker...it worked! He fell asleep.
His medicine was finally delivered yesterday and he's doing a little better. But that experience really did a number on him, I'm certain of it. He's still trying to recover. He slept last night for 12 full and uninterrupted hours. And this morning for the first time in a few days I saw him stretch his arms up and over his head again.
Now I know the medicine is working somewhat, enough that he shouldn't be off of it, at least not cold turkey. That's the hardest part - figuring out if what he went through was actually how he would be without the medication (which wasn't how he was before starting the medication) or if what was happening was withdrawal.
He's doing better now and I am so grateful.
As for the bright side of things...despite having such an awful experience, he was still able to pass his swallow study and I'm still seeing his quads work as they never have before (thank you, NAPA!). He's also been more interested in holding his head upright more often lately, even with everything yucky that was going on.
A few weeks ago this position would have been tough to get him in and almost impossible to get him to stay here. I actually walked away a couple of times to see how long he would stay like this. I took a bunch of pictures, but I won't go overboard so here's just one.
On his elbows lifting his head nice and tall.
Someone needs a haircut and it's not his PT!
I'm so proud of him! Despite two crappy weeks (he was sicky last week), he still perseveres.
Keeping going little soldier.