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)
"I'm talking about the first time. With the Risperdal."
"I know. The first time was this fish-face thing."
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?