Kevin J. Black, M.D., one of the staff physicians at the Washington University Movement Disorders Clinic, is on the TSA's Physician Referral List. Since each person is different, you will want to contact your personal physician for specific medical advice.
Q: My child has never had a brain scan - why wouldn't this be
helpful?
A: Good question. Most of us would think that more information
would always be better. But that's not how to take the best care of people.
Look at it this way. Right now I could get a hundred blood tests done for
a hundred different diseases. But it is so unlikely that it would help
me in any possible way that it would be a waste of time, money, and blood,
not to mention I hate needles. There are two reasons it wouldn't help.
First, I probably don't have any of those diseases. I don't have the usual
symptoms. Since no test is perfect, if one of the hundred tests came back
as abnormal, it would more likely be a lab error than a true indication
that I had some disease. The second reason the tests wouldn't help is that
it wouldn't change what I do. Many of those diseases are not curable, and
if I don't have any symptoms, why would I want treatment anyway?
The situation is similar for a brain scan. In TS,
our current brain scans look normal, so it won't tell you anything. But
you might wonder, maybe this isn't TS after all, it's a stroke or something.
But if your neurological examination is normal (that's the stuff the doctor
does like tapping on your knee, watching you walk, testing your memory,
etc.), then we know two things. One, there are only a few illnesses that
do this. Two, for most of those illnesses there is no specific cure. The
rare exceptions turn out not to be diagnosed by a brain scan.
Bottom line, for most folks it wouldn't help so
there's no point to do it. Incidentally, the same is true of many illnesses,
including Parkinson's disease and panic disorder.
Q: Do you recommend taking a child off of Orap after adolescence
to see if his symptoms have decreased?
A: I'll go you one better. For most people I recommend cutting
down or stopping medication if their symptoms are mild and they've been
on it a good while. Tics are worse at some times and better at others.
Obviously there is a trade-off between benefits and side effects, and some
people will do better to just stay on it. This is an individual judgment.
Q: What are the signs of EPS?
A: EPS is doctor talk for "extrapyramidal side effects" or "extrapyramidal
symptoms", which is doctor talk for "parkinsonism, dystonia, or akathisia."
These words are in turn doctor talk for various side effects of antipsychotic
medications. They can include shaking of a resting body part, drooling,
taking short steps, a stooped posture, involuntary muscle spasms (such
as the neck twisting), or an uncomfortable feeling of restlessness when
sitting or lying that is improved by walking. All are treatable if recognized.
P.S.: A couple of years ago in this space I answered a question about using Depakote® (valproate) for rage attacks (www.nil.wustl.edu/labs/kevin/move/ts-askmd5.htm). A new study just out gives better proof that this may help. In the May issue of the American Journal of Psychiatry, doctors in New York City report on twenty children, ages 10-18, who had chronic behavior problems (conduct disorder or oppositional defiant disorder). For at least a year, the children had also had four or more outbursts of rage or violence per month "on minimal provocation", and "multiple daily distinct shifts from normal to irritable mood ... without a clear precipitant." These carefully chosen children were treated with either a sugar pill or Depakote, but neither the children nor the doctors knew who was getting which. Eight of 10 kids getting Depakote, but none of the kids getting placebo, improved substantially (meaning at least 70% lower ratings of aggression and anger). We don't know whether this will work for other kids with violence or rage, including kids with TS. Still, this is very good news.
P.P.S.: We have now started our study of levodopa as a treatment of TS. Thanks to TSA for supporting this study. See www.nil.wustl.edu/labs/kevin/studies/TS-dopa-tx.htm if you would like more information.