This is the first thing most people do...and they shouldn't.
I get dozens of emails a month from parents who say "My child has started to
grunt in class, does he have Tourette syndrome? I have put him on Ritalin
and he's now suicidal...help!"
If you see a tic it could be one of many things: muscle spasm, fatigue, copper
deficiency, or a tic disorder. It does not mean your son will spend the
rest of his life yelling obscenities while rocking back and forward in a park.
Take a couple of deep breaths and move to step two...
Map out the tics
Have a look at the pattern of tics. Have they been there for over three months? A year? Do they come and go, or are they pretty much there the whole time? Are there just vocal tics? Or movement tics? Both? Getting a clear picture of when the tics happen (eg. during a certain class in school, at 5pm every night) and how long they have been happening really helps when you go to step three...
See a NEUROLOGISTfirst
I can't stress this enough. DO NOT see a psychiatrist, psychologist, counselor, therapist, masseuse or any other medical specialist for tics. They know very little as tics are not a mental illness, they are like Huntington's disease or Parkinson's. A shrink can not cure dystonia by talking about your mother...it is a NEUROLOGICAL problem and as such you should see a neurologist. Granted, you may need to go to a GP first to get a referral, but if you're sure that the movements are involuntary and can only be stopped for a little while then insist on a neurologist. One of the main reasons is that most doctors will look at a fidgity TS child and say "oooo
ADHD!" because everyone has heard of ADHD, while most people think you have to
swear uncontrollably to have Tourette's. (Yes, I am being a bit unfair to
the vast majority of Doctors but I've met a few...)
Having an incorrect diagnosis of ADHD is nasty because Ritalin makes tics worse.
A neurologist should, if he/she is responsible, ask to...
Test to exclude other possibilities
There is no readily available test for Tourette syndrome.
But there are tests for about everything else. The neurologist should, at
the very least, get a blood test done to exclude copper problems, and a couple
of tremor causing conditions which can be picked up by blood test (I think
Huntington's is one of them, but they generally won't tell you the answer to
this one unless you specifically ask). Most will also ask for a CAT or EEG
scan to check there is no brain damage, stroke or aphasia.
These tests are painless (unless you're claustrophobic, then you might want to
skip the EEG) and you should get the results quickly. So they come back;
all negative. The Neurologist says, "Yes, I think Tourette Syndrome is the most likely diagnosis. Now you need to...
Tell a friend
This is not just for the patient. If it's your child that has the condition, tell someone impartial, but understanding. When push comes to shove and you need to be reassured that you're "normal" then it can really help to have someone to talk to. Preferably not a
partner...they're too close. I don't mean, don't tell your partner, but
tell someone else as well. That way, when you daughter has had a really
bad tic day, and your husband is as stressed as you are, you can call your
sister and have a whinge. Even if you don't tell anyone for your entire life
about your tics, go online and start a blog or something! But keep in mind
you'll probably need to...
Think of a story
Unless you spend all day alone, someone is eventually going to wonder out loud why you "do that". For the first, ooo, 5 years after my tics began to interfere with things, I would turn red at this question and walk away quickly. So you need a quick spiel. About 4 sentences long will do, and keep it simple. I remember in year 12 I was already into the finer details of a long TS lecture, when I realised that the girl I was talking to
didn't speak English well enough to understand "neuroreceptor abnormailty".
For your reference, I now use:
"I don't know if you've heard of Tourette syndrome? It's a movement
disorder, I don't mean to (insert action here) like that but it feels
uncomfortable if I don't."
So now we can cope with the public, but it's a good idea to...
Keep an eye out for co-morbid conditions
Like it or not, Obsessive compulsive disorder and Depression are very closely linked with Tourette syndrome. The chances are something horrible like half of all people will have one of these! While
Obsessive compulsive disorder is annoying, it is the gateway to anxiety disorders, which can lead to Agoraphobia (fear of open spaces) and Social phobia (fear of other people) which can be crippling. Obsessive compulsive
disorder is quite well controlled by cognitive behaviour change therapy (Which
is where the psychologist comes in. Depression, obviously, can lead to
self harm behaviours and is very very nasty to go through. Treatment of
Depression is done by a psychiatrist. The best thing for Tourette related
depression is SSRI antidepressants because it is purely chemical in us.
But...
Use medication as a last resort
This is not so much for the actual Touretters, but parents of young Touretters. Medication is nasty stuff. Out of all the artificial junk to put in your body, tic drugs are up there with heroin and speed. In fact, some of the best things for tics are alcohol and marijuana, which shows that these drugs affect the same part of the body; the
brain chemicals.
Think of it this way: If you wouldn't let your 10 year old get stoned, do you really want him/her doped up on anti-psychotics?
I'm not saying there isn't a place for medications. I personally could not safely operate a car without them. But I am well aware that I am addicted to them. When I went off Pimozide, even though I did it slowly and with full medical supervision, I had a week of insomnia, violent manic periods, and a lingering nausea. This is because for 8 years I had been sedated 24 hours a day, and suddenly all these chemical signals were getting through that used to be blocked. And for those 8 years there was the risk of the dreaded QT lengthening. They are not nice. But, if you really need them
then...
Choose Treatments Wisely
Treatment doesn't have to be drugs. It could be relaxation therapy, diet change, exercise (yes, that actually does work!), surgery, shock therapy, or ignoring it and hoping it will go away.
Whatever it is, remember that it has to work for you, you have to be able to do
it for (unfortunately) the rest of your life, and you don't want it to do any
long term damage.
Whatever you decide to do, the most important thing is...
Live your life as before
I get the occasional letter from people saying "I don't want to have children because they may have TS." Usually after I do their probabilities they find that the risk is lower than they thought and some change their mind. But this horrifies me. You should not have to change your life plans because of a few stupid little tics! There are surgeons, radio DJ's, dancers, Politicians, and numerous parents who have Tourette's
Syndrome. And if my parents had decided not to have me because I have Tourette's I would be devastated.(Actually, I wouldn't do anything because I wasn't born, but you get the idea.)
Sure, at times my life has been tough, but I have a friend with Diabetes who
could die for the lack of a jelly bean. And I think a bit of extra
blinking is bad???