These are the most common questions I am asked via e-mail. If anyone else has any comments/suggestions on additions or alterations to my answers - please let me know!
I hope that most questions can be answered on the TS and Tic Disorders page
More FAQ Links:
Common Questions inc Meds for Mild TS, New Diagnosis, which Paediatrician etc
We think our daughter has TS. Should we see a doctor, even if we dont think she needs treatment?
Treatment is only necessary for TS if the tics are significantly interfering with the child's life. My son is not treated - right now he doesn't need medication, but there may be a time when he does. The diagnosis was vital for us though, just to give a name for 8 years of tics, an explanation for why he cant help doing the tics, and that its a neurological condition. Also, having a diagnosis means the support system is in place should it ever be needed. Few doctors know about TS - and it may take a while to find the right one who has knowledge and experience of TS. There are specialist TS clinics around the country - but they often have a long waiting list. Please post a message in the forum - state which area you're from, and others will help out with advising you on which doctor you should request referral to, or maybe a knowledgeable doctor nearby anyway.
Treatment is not standard - it's a case of trial and error with meds until the right one is found one that is helpful for the tics, whilst having fewest side-effects. Some people find that the side-effects can sometimes be worse than the tics. Common medications for TS include haloperidol, clonidine, pimozide and others. Some people find nutritional supplements or other alternative treatments helpful. I prefer to leave the medication information to people who know more about it than I do. There are many links to treatment information on my Links page.
This site gives a lot of info, about treatment too - Tourette Syndrome Plus
I can speak only of my own experience - as much as possible, accept and ignore the tics, until you see that they are bothering him, then let him know that you understand that he can't help it, and that it's OK to tic. (we call them "habits" most of the time but others feel its best to call them tics) There's no point in telling him to try not to do it, as this is likely to make him want to do it more. Stress can make them worse. When we realised it was TS we talked about it quite a lot - I told them home was a free-to-tic zone. It was a safe place where they could tic without worrying about them or what others thought. We rarely talk about them now, but they know they can anytime. They're very good at pointing out mine! (some I never realised I did)
It's hard sometimes to know when to say something. I can usually tell if the tics are bothering my son, and mention them then - sometimes he will talk about them, most often not. But I feel I need to acknowledge the tics at those times, just to let him know that I understand that they are bothering him, and give him the opportunity to express his feelings.
It's a good idea too to speak to his teachers about your concerns, and make them aware that this is a problem - so that they can look out for any problems at school, whether with his work, or with teasing. I think it's important to have a teacher on side.
The criteria for diagnosis is multiple motor tics, at least one vocal tic, (not necessarily at the same time), the tics must change from time to time, and be present over a period of at least one year (and onset before the age of 21). 1 in 5 children have transient tics that is, they have tics, then they disappear after a while. In a classroom of 30 children then, 6 of them will have had, or will develop, tics at some time. I shouldnt worry about the blinking, but if other tics develop, they change from time to time, he makes sounds, and the ticcing goes on for over a year then yes, it may be TS.
Tourette Syndrome needn't be the monster that it is often portrayed to be. My son's TS is mild most of the time, and he hasn't required medication. I, and many others, also believe there are many positive qualities to having the TS gene.
It is said that a third of children lose their tics completely before adulthood (although it's possible they can return later in life), another third's tics lessen considerably before adulthood - and live a life of very mild and few tics (which don't bother them or others), the other third have tics all their life. Some people think TS peaks at 10 years old, or between 9-13years. Some say that TS worsens for a decade, then improves. Another study (Leckman et al 1998) has shown that in about half of patients, the tic symptoms will remit completely by late adolescence. I would say that everyone's experience of it is very personal and there are no hard and fast rules. Generally though - the outlook is good.
Are there any Alternative Treatments for TS?
I have included information about alternatives and complementary therapies on the Alternatives page.
Some people believe nutritional supplements help.
Others use the Feingold Diet - links from Alternatives page
These vitamins are thought to help TS: Vitamins B6, B12, C and Zinc & Magnesium.
Aromatherapy can be used for the relief of tics.
Chris Mansely at the TSA has an information pack about complementary therapies. E-Mail him
Check out all the links on the Alternatives page
Cheryl George's site, Feingold Diet, Latitudes, Bonnie Grimaldi's site, The Environmental/Allergy Connection - should all have information that may be helpful. There are also links to online health shops that may stock the above items.
The vast majority of cases of tourette syndrome are passed on from a parent, although there are a minority of incidences where there is no history of tics in the family. Sometimes though, symptoms are easy to miss - the childhood habit that was largely ignored and then grown out of, having to even up - knock one elbow, then you 'have' to knock the other one etc.
If a parent has the gene, there is a 50% chance of each child inheriting the gene. If they do, a boy has a 99% chance of the gene being expressed either as TS (50%), or another tic disorder, or as ADHD or OCD. TS is closely related to ADHD and OCD, and it is usually the case that other members of the family have symptoms of one or more of the 3 disorders. A girl has a 70% probability of the gene being expressed as one of these disorders. Boys with TS outnumber girls by 4:1.
Even without symptoms then, it's still possible to carry the TS gene. A symptom-free male child is far less likely to carry the gene. That statement though is complicated by missed, ignored or long forgotten mild symptoms.
The TSA website has an article with lots of information on the genetics of TS www.tsa.org.uk
This is a forum post in response to a similar question:
If you don't have symptoms, then you probably
don't carry the gene (if your dad's TS is related to his genes). I think the figures are
something like this - as you say, you have a 50% of inheriting the gene. But let's assume
you did inherit it - you would have a 70% chance of having some symptoms (whether TS or
OCD), your brother would have a 99% chance of having symptoms. Many people
assume they don't have, or have never had symptoms, but a little research will often
uncover something such as a childhood habit. As your Dad doesn't like to talk about TS,
it's possible that she would have ignored and not spoken about any habit/tic you or your
siblings once had. There may be some obsessive compulsive (and/or ADHD) symptoms too,
which is maybe put down to 'fussy' or 'perfectionism', or "always on the go"
The website (TSA) linked above will give you lots of info about the genetic side of things.
There are cases of TS which occur with NO family history, some of these may be related to childhood infections (esp streptococcal infections - PANDAS). I know of others who have developed symptoms following head injury etc.
And even if you do have a child with TS - the vast majority of folks with TS have it in such a mild form that they are not aware of it and never seek a medical opinion (those are the ones who usually don't appear in the statistics). You tend to hear only about people with more moderate-severe symptoms, in the media etc. Recent research shows (in US and UK) that as many as 3% of the general (secondary) school population has enough symptoms for diagnosis of TS. Many more have had transient tics (which most people now believe is just on the milder end of the spectrum).
Of those with TS, a third grow out of it as they reach adulthood, another third's symptoms lessen considerably.
The vast majority of people with TS lead very successful lives - see the stories links on the links page. So not all doom and gloom!
Try this website for positive (and accurate) info about TS
Please ask any other specific questions in the Discussion Forum
Please also visit the TSA UK web site at www.tsa.org.uk
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17 March 2002 Date last updated