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Monday, September 5, 2011

Adios, Amitriptyline!

And don't let the refrigerator door hit you in the butt on the way out! Raya had her very last dose of amitriptyline last night. As I drew up that 0.1ml of clear liquid in the syringe, I had 2 thoughts. #1: What in the heck kind of difference does 0.1ml of ANYTHING make?? (Just FYI, 5ml is 1 teaspoon, so for comparison's sake, 0.1ml is a teeny tiny fraction of a teaspoon.) Thought #2: Sigh, we've come such a long way since we started her on this stupid but wonderful medication...*sniff sniff*
I've always had a love-hate relationship with amitriptyline. One of the GI doctors started her on it when she was in the hospital for 2 weeks last October. She had just gotten her GJ tube and we were only expecting to be there for 2 or 3 days at the most, but then she started vomiting huge amounts of bile so we ended up being there for a lot longer. Anyway, she was puking her little guts out morning, noon & night even though she wasn't being fed into her stomach anymore so the doctor said that he wanted to try putting her on amitriptyline. It's commonly used with kids who have had a fundoplication surgery (aka Nissen or fundo) because gagging & retching are common side effects of that surgery and the amitriptyline helps relieve those symptoms. At that point, I was willing to try just about anything so we could get the heck out of the hospital to help Raya feel better.
It didn't seem to do much right away but he said it might take a while for us to notice any real difference.
It did take us a while (as in several months) to get the dosage adjusted to a point where we really started to see a difference. Raya's GI doctor is fairly conservative in her approach to giving medications and has always started Raya off on a small dose and increased it as needed. About 4-5 months after she started on the amitriptyline, her vomiting started to decrease to the point where she not only stopped vomiting first thing in the morning EVERY single morning, but she wasn't even vomiting every day anymore. Then the next thing we knew, we had gone for almost 3 months without her throwing up. I credit the changes to striking the right balance of her medications and her body learning to cope with things better. So yes, I'm very grateful for amitriptyline and her other medications that have finally made her stop throwing up ALL the time. (and so is the washing machine :)

That being said, I am SO glad we're done with that stupid medication!! Amitriptyline made me nervous. For starters, it has to be compounded, so it can only be made at certain pharmacies. Second, it's only stable for 14 days at a time so it has to be made every 2 weeks. Third, even though the doctor wrote the prescription to allow some extra in the bottle, the pharmacist refused to give us more than 9.1ml at a time. That's not even 2 teaspoons! It was the EXACT amount for 2 weeks and didn't take into account the possiblity that somebody might accidentally forget to tell somebody else that they had disconnected Raya's tube and the somebody else unknowingly squirted all her meds straight into the bed. Twice. (sorry Donny) Or the fact that some of it would stick to the sides of the bottle no matter how long you turn the bottle upside down. It was very frustrating. Then there was the part about how it's a neuro-transmitter and therefore can't be stopped abruptly without the risk of serious side effects. That always made me nervous because what if there was an emergency and we couldn't get a refill of it?
So now that I've made a very short story very long, I am SO happy to have her off of one of her medications and happy that we'll be starting to wean her off of another one very soon. Yay for less medication. :)

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