So, Katie hasn’t been sleeping well. She’s had a lot of spasticity lately, and has been kind of crabby. One could cause the other, or something else, like an infection, could cause both. I don’t know. She doesn’t have any signs of infection, though, so I think the tone is the starting point.
We have one more bottle of stuff to try. I haven’t tried it. The last bottle of stuff (oral baclofen) made her agitated and an insomniac. The bottle before (Artane) made her throw up. That was about three months ago. My three year old is still occasionally, randomly saying, ‘Katie’s dinner turned brown.’ Ugh. I just don’t have heart to try yet another thing in the same class of drugs.
She’s been on Clonazepam for quite awhile now, and it helps, but it also makes her sleepy. As soon as the sleepiness wears off, the spasticity comes right back. Of course, it’s also good for treating seizures (which she doesn’t officially have, but the undefined tics she has had did definitely decrease) and for treating anxiety. I’m pretty sure she has some of that, too. Especially around doctors, dentists, and anyone in scrubs.
Her muscle tone is to the point that getting her into her chair, feeding her, and changing her diaper have gotten pretty challenging. So, I talked with her physiatrist yesterday. Even though the oral baclofen didn’t go over well, she thinks the baclofen pump would be our next option. Our last physiatrist had broached this awhile ago, and said that they like to do a trial. They admit the person for a day, and give the med by epidural to see how well it works. So, that was what I was expecting.
Our current doc says that they have basically stopped doing that, because they found it wasn’t a good indicator of anything. The epidural and the hospital setting don’t mimic real life very well. Besides, the results are apparently so positive that they are confident in it’s effectiveness.
Okay, so maybe it’s time to try this. But, this is another surgery, albeit a much smaller one than what is planned for October.
The physiatrist thinks it would be a good idea to do the pump first. She thinks it would be good to have on board before Kate’s spine surgery, to help her heal, and keep her tone down while she does. We might also be able to have it done at the same time, but our doc felt it would help more to be in place first.
So, it’s off to meet with the neurosurgeon.