Tic, twitch or flail?

[Slipper]

My daughter is 12 yrs old and considered severely autistic. Ironically, she is also considered very easy to work with and bright.

 

Over the past few years, we have noticed behaviors that seem to be increasing in frequency and severity. It started with anxiety type behaviors - she needed to tap doorways before entering or leaving and would need to kick her foot to the side if she walked too close to anything (to tap with her foot against the object). We started her on medication for anxiety and these decreased but we started seeing twitches in her neck that would cause her to rapidly jerk her neck to the side.

 

We have gone through various med changes and movements through the years including rapid eye blinking to the point of eyes squeezed shut, facial grimacing, arm/leg flail, etc.

 

Currently, her arms will flail above her head, sometimes once, sometimes several times. Her head will jerk back or to the side. Her hands will contort and fingers will flicker or contort and freeze into weird positions. Sometimes she will make sounds (like a hard 'ch' sound).

 

She's currently on risperdol (.5, 2x a day).

 

She's non-verbal and her comprehension is low. We are trying to teach her questions (and have successfully taught "I am feeling _____" and she provides the word sad, angry, happy or sleepy) but otherwise she can't answer questions. She knows how to read and can take AR tests at school on a 1st grade level, but questions about herself are not possible yet.

 

We have not had a psychiatrist for over a year and a half. Our insurance will not cover the autism diagnosis. I finally found a psychiatrist who will take us and we will pay cash (full price) for visits. We see him next Wednesday and I hope I like him because I have no other options.

 

She has no flailing or tics that I've noticed when she sleeps.

 

I have looked at tardive dyskinesia and it's possible. I am wondering if there are any other things I should look into to ask him about? I've assumed the behaviors were anxiety related in the past or simply "part of her autism" (and I really hate that phrase).

 

Thanks for your thoughts.

 

ETA - She enjoys school and is happy there. The flailing will occur whether she's happy or sad. We have ruled out major seizures although the school notes several absence seizures frequently. MRI's and EEG's are clear.

[dsmith]

Some of that behaviour sounds a bit OCD (tapping doorways before entering) and the arm flailing and head jerking could certainly be tics. We had to take ds off of Risperdal because it was making his tics much worse. Our neurologist at the time did not believe us, but there was a dramatic difference within 1 hr of getting the medicine. Our current neurologist told us that Risperdal can absolutely make tics worse in some kids. We now have him on Abilify, which generally helps with the tics. I don't know what kind of dose your daughter is getting, but we were at such a low dose that the doctor wasn't worried about tardive dyskinesia. (I'm trying to remember the dosage, I'd like to say it was .25ml/day, and the Abilify is currently 1ml/day) All of our past and current neurologists have said that they prefer to use very low doses of these drugs with spectrum kids, because generally they are very sensitive to them and respond well to low doses. I prefer to see a neurologist with ds. It seems the psychiatrists around here are only doing 15 minute medication visits. Our neurologist spends a lot of time with us. If you need a good neuro in the NY area, let me know.:001_smile:

 

ETA: I now see that you have the dosage listed. Don't know how I missed that! That dosage would have been way too much for my son, but all kids are different.

Edited April 19, 2012 by dsmith