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I had been having some concerns with Jaysen's reactions to medication. He was doing so well on the Risperdal, but had to stop because of the Tardive Dyskinesia. Seroquel proved to be ineffective, yet still produced the TD results (although a different movement).
After talking with his psychiatrist, she was under the impression that the movements included some form of tongue movement. When I corrected her, she looked puzzled. (To which I looked right back at her like, "why are you looking at me like that- you're the psychiatrist. You tell me what's going on!")
"So...Jaysen didn't move his tongue like this?" (she wags her tongue like she's trying to lick her cheek)
"No. Just his jaw."
"But the first time, his tongue was moving outside of his mouth, like this." (wags tongue again)
"No."
"I'm talking about the first time. With the Risperdal."
"I know. The first time was this fish-face thing."
"No tongue?"
"No tongue."
"Hmmmmm....."
She looks perplexed, thinks for a moment, then writes down the name of another doctor. Apparently, this guy is not only a neurologist, but he's a Movement Specialist. I guess they're hard to come by, because this is the only one that the psych knew, that was even anywhere near us. From what little research I was able to do, he's going to hopefully be able to tell if the movements are part of the ASD, a separate disorder themselves, or a result of the medications? That would be awesome.
There is a catch also. Of course there is, because why would anything go smoothly when it comes to Jaysen? This new doctor is not pediatric. Matter of fact, the first time I called to make an appointment, they turned us away because "he doesn't see kids". The psychiatrist had to call the office and ask him to please see Jaysen, as a favor to her.
I'm curious if there are any other cases of Tardive Dyskinesia out there, and what other avenues were sought. I do have to admit, if I'm being totally honest, that I miss the "Jaysen on Risperdal". I would love for him to be that happy, open, and aware again. I don't want to get my hopes up, but maybe this Doctor will be able to tell if he could try the med again. It might sound awful to some, but you didn't see my kid when he was taking it. Trust me- I battled myself whether to put him on it or not.
Has anyone else had any experiences with a Movement Specialist?
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3 comments:
No, sorry, but would like to see one!
Medication is a difficult area isnt it, so i know how you feel.
My daughter is on Risperdal also, and I have been worried about Tardive Dyskinesia. My quandry is I can't tell which quirky movements might be that versus which might just be related to her dual sensory impairments - you know, kinda like Stevie Wonder rolling his head from side to side.
The only movement specialists I have heard of are doctors more focused on movement of big muscle groups - e.g. walking, standing from sitting etc, almost gait specialists.
I'll be really interested to hear what you find out.
I'll keep you posted as I find things out- his appointment isn't until the end of November though.
From how it was explained to me: Quirky movements (like flapping, spasms, or tics) tend to have a jerky nature to them. Dyskinesia movements are more of a fluid motion.
Tardive Dyskinesia (caused my medication) movements characteristically have a "rolling tongue" that go along with some sort of facial movement or lip smacking.
I noticed Jaysen's "fish face" the day I increased his med .25mg. That's a really small increase. Jaysen's movements are perplexing the psychiatrist because they are missing that "rolling tongue".
Any way you look at it, it's scary.
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