More threads by David Baxter PhD

David Baxter PhD

Late Founder
Does Tourette’s Run in Families?
June 9, 2010

Dozens of readers had questions about Tourette’s syndrome, the odd and poorly understand disorder that causes uncontrollable tics and vocalizations, after the disorder was profiled in a recent Patient Voices series. Here, Dr. Robert A. King and Dr. James F. Leckman of Yale School of Medicine respond to readers wondering whether Tourette’s is inherited and how common the disorder is.

Is Tourette’s Inherited?
My daughter is engaged to someone with Tourette’s. I worry about their children inheriting Tourette’s. What is the likelihood of that occurring?
Anonymous, San Francisco

A. Dr. King and Dr. Leckman respond:
Tourette’s likely has genetic determinants, but they may vary from family to family. When a parent has Tourette’s, sons have a higher risk of inheriting the condition than daughters. On average, about 20 percent of male offspring will have Tourette’s, compared to only about 5 percent of female offspring. The rates for a chronic motor tic disorder are a bit higher: 30 percent of the sons and about 9 percent of the daughters will have such a condition. In contrast, the rates are reversed for obsessive-compulsive disorder, or O.C.D., which sometimes accompanies Tourette’s, with 7 percent of sons and 15 percent of daughters developing symptoms of O.C.D. These are all approximate figures.

Over all, the total risk of inheriting Tourette’s syndrome, chronic tics or O.C.D. when one or both parents has one or more of these conditions is about 56 percent for sons and 30 percent for daughters.

That said, these figures come from research studies in which family members were very carefully interviewed about symptoms. Hence, some of these cases might not have been bothersome enough that they would ever have led to a medical visit. In reality, symptom severity can vary tremendously in affected individuals in a family, with many cases of Tourette’s, chronic tics, or O.C.D. being relatively mild or and not impairing everyday functioning.

A brochure on the genetics of Tourette’s is available for a modest fee at the Tourette’s Syndrome Association Web site.

How Common Is Tourette’s?
I think people would be surprised at how many have some form of Tourette’s. Most of them are mild, but it is a lot more widespread than most, including the medical community, care to admit.
Alex, New York City

A. Dr. King and Dr. Leckman respond:
Dear Alex, you are correct that tic disorders are relatively common. Last year, the Centers for Disease Control and Prevention reported the results of a nationwide telephone survey of households in the United States. They found that the prevalence of Tourette’s, as reported by parents, was 3 cases per 1,000 children, which works out to about 148,000 children nationwide.

The survey did not ask parents about chronic motor or vocal tics, which are much more common than Tourete’s itself. For example, a study of school-age children in Sweden found that Tourette’s was present in 6 per 1,000 children. Chronic motor tics were present in another 8 per 1,000 children, and another 5 per 1,000 children had chronic vocal tics. The most common condition was transient tics, which were observed in 48 per 1,000 children. The total for any tic disorder was 65 per 1,000, or 6.5 percent of all children.
 
I had little to do with my father but from the little I saw of him, I believe that he had TS due to the tics in his head through to shoulders. I think that my eldest may have TS as she has started to do some of the things I do like having to crack knuckles.
 

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I had little to do with my father but from the little I saw of him, I believe that he had TS

Interesting, because the same was true for me. Of course in those years, there was little if any diagnosis of Tourette being made, and people did,'t go to doctors much then anyway...let alone for something such as tics!

Wheter or not your children display any signs of Tourette, you may be well advisd to have a conversation with each of them anyway, to alert them to the possibility of the genes being expressed in later generations. They should be encouraged to pass along this information to their children, grandchildren and so on until the exact nature of the the genetics of Tourette is fully understood.

The conversation should also include being alert to notice any signs or symptoms of co-morbidity to Tourette such as attention deficit, difficulty in school, paying attention etc.as well as signs of OCD.
 
My eldest daughter has started to see a Psychologist for her anxiety that started this year. I believe that she has TS and I noticed the odd tic at first but a more present now through cracking knuckles. They psychologist looks like she's agreeing but alas, she can only advise as a Psychologist.
 

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psychologist looks like she's agreeing but alas, she can only advise as a Psychologist.

If I understand correctly, you are concerned about the expertise this particular psychologist might have in diagnosing Tourette, right?

If that is so, then your concerns can be answered by just asking if indeed she has the clinical experience necessary to make a definitive diagnosis. If not, ask her to refer your daughter to someone in your area with that expertise.

As you know there is no blood test or other imiaging diagnostic test at this time for Tourette, but rather the diagnosis is made through interview and observation. For that reason, the person making the diagnosis must have had training and clinical experience in Tourette to fully understand the complexities and nuances of this disorder.

Your daughter should be aware of her situation because that knowledge might affect decisions she makes as a potential future parent, in addition to be able to deal with any signs of Tourette in any of her children or later generations.

How old is your daughter and what combination of apparent tics does she seem to be exhibiting?
 
Well, as the laws stand in Australia, a Psychologist cannot not diagnose or prescribe medicine. That can only be done by a Psychiatrist. A Psychologist can tend to be a glorified Counsellor due to this. There is a fair difference of study though. A Psychologist can only recommend to a Board of Psychiatrist or recommend to the referring doctor.

She gets a bit anxious. She likes to sit up against me a lot so due to this, I feel her body getting tense a fair bit. At first I noticed the odd limb jolt but I left it. Mostly knuckle cracking and the tensing up of her body here and there.

---------- Post added at 12:48 PM ---------- Previous post was at 12:47 PM ----------

Oh, she is 13 as of April this year.

---------- Post added at 12:51 PM ---------- Previous post was at 12:48 PM ----------

I should note that I recently had a muscle biopsy and am waiting for the results for Mitochondria.
 

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the tensing up of her body here and there.

As you are probably aware, tics can take on various forms. Sometimes people with Tourette will find satisfaction in tensing up various muscle groups instead of exxagerated movements, and sometimes the unnoticeable muscle tensing might be a substitute for the exxagerated movement while in the presence of others, as to disguise and suppress the actual tic.

The latter is a strategy I have used most of my life as a way to suppress and cover up tics while in the presence of others.

Speculation is not a substitute for a definitive diagnosis, and for both your and your daughter's peace of mind, it would be well worth consulting a health professional with a professional interest in movement disorders and clinical experience with Tourette.

Are you aware of someone with that expertise in your area that you can consult?
 
I'm comfortable with who my daughter is seeing at the moment. She appears to be thinking the same line as myself. My daughter only wants to talk to another woman and as I live in a regional town, there isn't a smorgasboard of specialists here.
 

usul

Member
Over all, the total risk of inheriting Tourette’s syndrome, chronic tics or O.C.D. when one or both parents has one or more of these conditions is about 56 percent for sons and 30 percent for daughters.

how is this possible ? 56% means more than a chance out of two ? an autosomal dominant inheritance should be around 50%, and a lot less with reduced penetrance...

am i missing something ?

thanks for your reply
 

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am i missing something ?

Hello Usul and than you for your observation. My understanding is that the statement refers to the distribution of risk between sexes rather than an expression of that risk in the general population. Tourette appears to have a higher incidence in males than in females.

A diagnosis of TS was almost three times as likely for boys as girls, twice as likely for persons aged 12–17 years than for those aged 6–11 years, and twice as likely for non-Hispanic white persons than for Hispanic and non-Hispanic black persons.***

***Prevalence of Diagnosed Tourette Syndrome in Persons Aged 6–17 Years — United States, 2007
 
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