Comments(61)

  1. Parvez says

    Your presentation on the life cycle of tics discusses how and when tics start and the impact it can have on a child’s life; you mentioned some of the coping mechanisms that can be used to ensure a more successful school environment. Although tics can decrease in severity and frequency for some sufferers, for others they stay for the remainder of their lives. Many people with Tourette’s have difficulty finding employment after completing their education and this can hinder their chance of being independent. Do you have some suggestions for coping mechanisms for young adults with Tourettes as they leave school and enter the corporate environment?

    • Charles says

      I am on this chat board as a parent of a child with TS. We (as a family) would appreciate and enjoy sharing are son’s successes with others. He is now 22 years of age and is concerned about making a life for himself. He acquired a GED at age 16, learned to drive, and went to DVR for assistance with employment. He has been our “go to person” for TS. Our relationship is such, that we learn and understand more about his struggles with TS from him alone. It can be hard being a positive force for him constantly.

    • Dr. Michael Rubenstein says

      This is a really tough one to generalize. I think each individual learns to deal with their tics as they’re growing up and very much so in high school and perhaps college. It is actually a minority of patients whose disabling tics follow them into adulthood and for those, it can be a real challenge. I have cared for some very difficult patients over the years and most have seemed to find some way to manage their tics. It has been the associated behaviors of obsessive-compulsive disorder and ADHD, though, that have been the most disabling when it comes to entering the work force and treatment for these will typically be in the realm of cognitive behavioral therapy and occasionally in combination with medications.

  2. Amanda says

    Do you find that Tourette’s kids (7.5 years in this case) have problems controlling their emotions. For example, are easily excitable, immature for their age, easily frustrated or prone to angry outbursts (in this case, only with parents, not with other caregivers)? If so, is this directly a symptom of the Tourette’s or the ADD/OCD which runs alongside it?

    • Dr. Michael Rubenstein says

      I see TS children that really run the spectrum in this regard. To be honest, many of the TS only kids who are not as affected by ADHD or OCD tend to be more serious and/or mature. Children who are burdened with the ADHD or OCD tend to have more difficulty with controlling their emotions so it is really more a feature of the associated behaviors.

  3. Amanda says

    Is there any evidence to show that late-age night time bedwetting is more common in Tourette’s kids?

    • Dr. Michael Rubenstein says

      Good question. I’m not sure of any good studies regarding this, but sleep disorders in general are more common in children and adolescents with TS so it’s very possible that late-age bedwetting (enuresis) may be more common in TS.

  4. Meg says

    My son definitely tics more often when he is under pressure of school work, but sometimes when I try to lecture or help him I feel like I am increasing them. Do you have any suggestions about how to handle these situations? He is a good student, but sometimes waits until the last minute to complete an assignment.

    • Dr. Michael Rubenstein says

      This is definitely a situation that would be best handled by a therapist. I suspect that his reaction is simply because as parents we don’t make good therapists.

  5. NJCTS Admin says

    How to go about changing inappropriate motor/vocal tics with something more acceptable in a second grade school setting

    • Dr. Michael Rubenstein says

      This would involve working with a therapist in CBI-T or CBT. It should be possible to make headway at this age with therapy.

  6. NJCTS Admin says

    Does the combo of ADHD/OCD complicate TS, especially during puberty and prior to full brain development?

    • Dr. Michael Rubenstein says

      It complicates things very much as these disorders are typically more disabling for children and adolescents than the tics are. Patients with straight TS and little in the way of ADHD/OCD are much easier to manage in general.

  7. NJCTS Admin says

    What type of accommodations are appropriate in high school?

    • Dr. Michael Rubenstein says

      This list could be quite long and really depends on the specific individual. The common ones I mention to parents are extra time for testing, the ability to get up and step out of class if needed, lessening the burden of homework and things similar to this. The SAT has accommodations for extra time so I always mention this.

  8. NJCTS Admin says

    My daughter has “stimuli dependent tics”. She has about 80 different words that cause her to say a different word or phrase when she hears them. New tics like this come DAILY. I can’t find info on this and I don’t know how to help her cope.

    • Dr. Michael Rubenstein says

      This is tough and though I have seen it, it’s not the most common. This would be dealt with in therapy and I’m sure that one of the therapists quite familiar with TS would have some insight into a solution. I would think that CBI-T would be effective for this.

  9. NJCTS Admin says

    Is there any evidence that TS symptoms related to a co morbidity of OCD and Asperger will have a harder time lessening through lifetime.

    • Dr. Michael Rubenstein says

      I don’t think that it’s a rule and in the patients I’ve cared for over time there may have been a tendency to see some more TS symptoms in those patients with associated disorders. I’m not aware of any specific studies, though.

  10. NJCTS Admin says

    27 year old, diagnosed w/ TS @ 7. The tics however have lasted much longer than the severe Touettes when he was young. What meds or anything is out there for adults? He also has OCD mildly

    • Dr. Michael Rubenstein says

      We use the same meds in the adult population as in childhood. As always, though, it would helpful to pursue CBI-T along with medications

  11. NJCTS Admin says

    Are tics prevalent in autism?

    • Dr. Michael Rubenstein says

      Yes, tics are definitely more prevalent in patients with autism spectrum disorder

  12. NJCTS Admin says

    What is the likelihood the tics will decline if they are still present at age 22?

    • Dr. Michael Rubenstein says

      As I mentioned, tics will tend to wane towards the end of teen years and into the early twenties. There is still time for tics to decline in a 22 year-old. Tics can still wax and wane in adulthood and may completely remit only to return at a later date. This is the unpredictable nature of tics.

  13. NJCTS Admin says

    Would you comment on whether treating anxiety with meds would lessen the tics and help with attention?

    • Dr. Michael Rubenstein says

      Absolutely! I refer to this at times as an “end-around” therapy such that we are not directly attacking the tics, but rather reducing the “generator” that is driving the tics. I will frequently consider treating anxiety and OCD first and often the tics will improve along with the anxiety.

  14. NJCTS Admin says

    Dr. said that tics wane as the person approaches adulthood. Is this always the case? Don’t tics wax and wane throughout the life of a person with TS?

    • Dr. Michael Rubenstein says

      In general, tics improve into adulthood, but not always. And yes, even though they improve, there is still the waxing and waning nature of tics throughout life.

  15. NJCTS Admin says

    My 10 year old son has very mild vocal and motor tics. When I ask him if he has “urges” he says sometimes, but more often than not he is unaware of his tics and doesn’t know when he is ticing. Is this common?

    • Dr. Michael Rubenstein says

      At age 10, he should be pretty well aware of the sensory urges and it may be the case that he doesn’t have them or at least not with all of his tics. It’s not uncommon, but by far the majority of patients will have the sensory urges at some point.

  16. NJCTS Admin says

    Your thoughts on the options for people with TS whose tics do not seem to respond to either meds of CBT. (no age given)

    • Dr. Michael Rubenstein says

      Perseverance. Keep working to find something that will lessen the symptoms and keep an open mind.

  17. NJCTS Admin says

    Can a child with autism have TS or is it just then called autism with persistent tic disorder?

    • Dr. Michael Rubenstein says

      No, we have plenty of children that have autism spectrum disorder and are also diagnosed with TS. It does depend on the presentation, though, and in some cases it may be more appropriate to diagnose with persistent tic disorder.

  18. NJCTS Admin says

    What is the likelihood of an individual having tourettes without a comorbid condition?

    • Dr. Michael Rubenstein says

      I believe the likelihood of a TS patient having no comorbid condition during their lifetime to be fairly low, perhaps 20 or 25%.

  19. NJCTS Admin says

    Is there another tic disorder that includes both motor and phonic tics but is not TS?

    • Dr. Michael Rubenstein says

      No, the presence of both motor and phonic tics, not necessarily together is what defines TS

  20. NJCTS Admin says

    I’m interested in your comments about the difference in the level of care/treatments available between adults and children/teens. Some TS organizations tell parents that the tics will go away by their 20s. I’m 59, diagnosed at 37 but symptoms since 5 yrs old. My tics wax and wane and evolve into other tics.

    • Dr. Michael Rubenstein says

      Not surprising to see this. Tics are very often present for life, but typically improve into adulthood rather than disappear.

  21. NJCTS Admin says

    Is Tourettes/OCD/ADHD best treated by a psychiatrist or neurologist?

    • Dr. Michael Rubenstein says

      TS can be treated equally by either a neurologist or a psychiatrist as long as they are familiar with treating the disorder. TS/OCD/ADHD is the same, though in some patients where the associated behaviors are severe or disabling, they may be better managed by a psychiatrist or both a psychiatrist and neurologist.

  22. NJCTS Admin says

    Are you aware of any evidence that being low in zinc contributes to the onset of tics and/or the worsening of them? My son (7.5) has motor/vocal tics (for about 12 mons) and ADD. We are currently trialing zinc supplements to increase his zinc levels and reduce his copper levels. Is there any evidence that such ‘biomedical’ treatments assist with tics? My son’s tics did reduce with Clonidine (although this was actually prescribed to assist with the ADD rather than the tics).

    • Dr. Michael Rubenstein says

      I don’t think we have any definite data regarding supplements such as zinc or magnesium. I did have a patient just recently report improvement with magnesium supplementation, though.

  23. NJCTS Admin says

    Is there any more recent research on the life course of OCD in people who have TS? The study you presented is 15 years old. My son used to be a patient of Kurlan in the mid-2000s and he mentioned that there was a longitudinal study in process of OCD in people with TS, and I am wondering whether there are any new data from that sort of longitudinal study.

    • Dr. Michael Rubenstein says

      I apologize that I am not up on any longitudinal data regarding OCD in TS. That might be a better question for Dr. Kurlan when he speaks.

  24. NJCTS Admin says

    An individual who falls into the space between tics and ocd in the Venn diagram – with both phonic and motor tics that have lasted more than a year – in your opinion would you consider that to be TS?

    • Dr. Michael Rubenstein says

      Yes, chronic motor and vocal tics with or without OCD would equal TS. The OCD is more supportive evidence of the diagnosis.

  25. Kristine Hahn says

    My 13 year old son’s tics are off the charts. He has complete body motor and vocal tics all day every day. Thankfully when he goes to sleep they almost completely stop. What is going on with his brain that sleep seems to give him some relief? I know this stage of his life the tics are expected to be at their peak but I can’t believe his is anxious and stressed out all day every day; or is that possible?

    • Dr. Michael Rubenstein says

      Tics do not occur during sleep for the most part so there is nothing unusual about that. It sounds as though it’s not just that he’s stressed all day, but rather he is having a very rough time with his tics and this is not surprising for his age as you’ve noted. Sometimes, despite our best efforts we are unable to completely control a patients tics which is always frustrating for all involved. If you haven’t gone the route of CBI-T than that might be something to consider.

  26. Kristine Hahn says

    How does Cognitive Behavioral Therapy help someone with Tourette’s Syndrome?

    • Dr. Michael Rubenstein says

      It depends which part of the TS you’re talking about. CBT is incredibly effective for obsessive-compulsive behavior and anxiety. By treating this, the tics will often improve. CBT is also part of CBI-T which is specifically for his tics.

  27. Sara Carpien says

    My 8 year old son has TS and possibly OCD. What I notice more than anything is a lot of anxiety. When placed in an uncomfortable social setting (e.g. camp, parties, sports, large crowds, etc.), he gets shy, anxious, physical [towards me], and immediately hides). Is this a comorbid condition and what is the best way to treat it? It holds him back from trying new things and he only seeks solice in playing video games and a small group of close friends.

    • Dr. Michael Rubenstein says

      Yes, absolutely a co-morbid condition and it is very commonly seen. The best way to deal with it is through therapy and specifically, cognitive behavioral therapy. You should find a therapist who is experienced in seeing patients with OCD and perhaps even TS. The best resource for finding a therapist versed in CBT is your local TS society. There are times when we consider using medications and therapy, but I usually get my patients to a therapist first and then rely on the therapist to tell me whether we also need to consider medications.

  28. Shirley says

    What are your thoughts ot experiences for medical marijuana
    for treatment. My son has Tourettes and ADHD and wants to know if this is this a recommended or effective option.

    • Dr. Michael Rubenstein says

      This is a very tough question for me for a number of reasons that I won’t go into. I have serious concerns in general about the medical marijuana movement and even more significant concerns about using marijuana in adolescents which is when they would be considered useful as tics are worse in the teenage years typically. That being said, I believe there is some evidence that it might be helpful in alleviating the tics, but that doesn’t mean that it’s safe as they were not weighing the risk/benefit ratio. I will tell you that anecdotally (meaning not scientifically, but just based on experience of patients) I have had some patients tell me that using marijuana makes their tics much less prominent. We don’t base our treatment on anecdotal results, though, so you must take that with a grain of salt. Basically, the answer to this question is still out there I’m afraid.

  29. Darryl says

    At what age do you find that kids can reliably communicate that they do have a Premonitory urge? I ask my 7.5 year old but he doesn’t really understand. He just says that he can’t help doing what he does.

    • Dr. Michael Rubenstein says

      Very interesting question. I had a young boy in clinic today who just couldn’t tell and was 8+ years old. It’s variable and I’ve had 6 year-olds tell me where I’ve also had 9-10 year-olds that couldn’t and were clearly having them. So if you asked me at what age they could reliably tell you if they do have them it would have to be probably 10 years old.

  30. Tanya says

    A while back I was reading a study of ADHD and its comorbidity with Tourette and what the study concluded was that if a child was diagnosed with ADHD they should be screened for Tourette. During the webinar you touched on that and I was hoping you could give me more information on that. I’d like to know more about that connection. I had seen a study that said that up to 96% of those with Tourette have the symptomology for ADHD so we know there is a connection there but we don’t really parse out why or what the stats are.

    • Dr. Michael Rubenstein says

      Patients with TS make up a small portion of those with ADHD, but up to 90% of patients with TS also have co-morbid ADHD. Both disorders have a significant genetic component and so there is probably some linkage between the two of them that increases the likelihood of having both disorders. I’m not sure that every child with ADHD should be “screened” for TS, but it should certainly be in the back of any clinicians mind when treating patients with ADHD.

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