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A Nurse Talks About Tourette Syndrome


A Presentation by Susan Wightman-Hentz, RN, MSN, CPNP
Children’s Hospital of Philadelphia
January 16 at 7:30 PM EST
Download this webinar by clicking here

In our weminar, we learned about some of the problems we professionals encounter when diagnosing and providing treatments for the baffling disorder called Tourette Syndrome — especially when accompanying disorders are present. What are some of the specific experiences some of you may have had, or what specific questions are some of you struggling with?

Here are some questions posed during the webinar:

  • What are symptoms of attention deficit disorder with kids that have chronic tic disorder?
  • Any suggestions for dealing with Coprolalia?
  • Since Autism has so many of the same co-morbids, is there a link between TS and autism?
  • Awesome presentation. Thank you. I have read opposing views on tic triggers. Some say things trigger tics, others say tics are basically tics and are not caused or worsened by environmental sources. Are things like food additives, caffeine and food dyes triggers? How about environmental triggers? If my child has simple vocal or motor tics and they are replaced by complex vocal or motor tics, does that mean his Tourettes is worsening?
  • How do you address a child’s realization that they have these extreme feelings of anger? My 11 year old just asked to talk to me a few nights ago. She said “sometimes I just get so angry and I can’t stop it and I don’t know why.” She has had these episodes of rage before, but was somewhat unaware. Now, she is very much self-aware and afraid of what is happening. Do the psychological symptoms also tend to fade after 15 years also?
  • There was a book you referenced on OCD by “Tamar..” can you repeat the name?
  • What are your recommendations for the best prognosis regarding independence in adulthood (i.e. attending college, having a career)? Also, behavioral interventions for aggression, impulsivity. What are appropriate logical consequences if the child also has ODD behaviors? P.S. Both questions above are re: a 16 yr. old who is emotionally younger.
  • Can some of the drugs used for treatment of OCD make the tics worse?
  • Our child is doing well in the special ed program. Should we challenger her and move her “up” to the resource classes? Is it better to challenge or to keep her in special ed?
  • What medications are appropriate for my son with ADHD, OCD and TS?
  • I would have like contact info regarding the Lego therapy and Dan LeGof (?)
  • You mentioned Panic and anxiety in children with TS; what type of therapies can be effective for older children and who do parents turn to teach/administer these therapies?
  • My 16 year old daughter is on Zoloft for OCD (about 5 years), and Risperdal for Tourette’s (less then 1 year). Do these medications work well together?

Comments(19)

  1. bhall says

    I really enjoyed the seminar. Thank you.

  2. Suswight says

    Thank you very much for your kind comment.
    Susan

  3. Suswight says

    ?: What is a good age to change from a pediatric neurologist to a regular neurologist?

    It really depends on the child and how they feel going to a child neurologist, what kind of a relationship you have with your neurologist, and whether or not you have found an adult neurologist who specializes in Tourette and related disorders. In our practice, we are still seeing “kids” well into their 20’s, as they are comfortable with us. Eventually, if they still need medications, we transition them to an adult person by the mid-20’s. If they do not need medications, then they may not need a neurologist at all, but rather a psychologist or counselor to help with all of the associated issues that may accompany the Tourette.

  4. Suswight says

    ?: Any suggestions for dealing with Coprolalia?

    Next question has to do with copralalia. That is a tough tic, especially as so many believe that the child is “doing it on purpose”. Some of the best behavioral approaches include, announce to the child that you will ignore the tic as you know it embarrasses them and they can’t help it; help the child find a substitute tic that is less offensive; and finally, some medications can be very helpful with copralalia.

  5. Suswight says

    ?: What are some tips for convincing a 16 year old that it’s beneficial to take medication? How do I cope with oppositional and defiant behavior and an unwillingness to adhere to household rules?

    Hmmm, convincing a 16 year old that they need the medication is a tough question. I guess the bottom line is that if they haven’t figured out that it is beneficial, they won’t take it. So if you are convinced that he/she needs the med, you may want to allow them the opportunity to be med-free for a space of time, with the understanding that both of you will discuss the results after a couple of weeks. Identify with your adolescent that you really don’t enjoy sparring with them over their behavior and you understand that within a few short years, they will be making most decisions about the way he/she lives his/her life. Therefore, a trial of med freedom is not that unreasonable.

    With regards to abiding by household rules and ODD behaviors, this is so hard for any parent; I feel for you. If you can work with a counselor/psychologist using logical consequences for his/her behavior, that is likely to be more helpful than other approaches. Here is an example: if you have a rule that he/she must be home by 10 PM, with the understanding that if he/she comes late (synchronize watches, or you will be challanged) there are no privileges to drive the car for a week, then you have a pre-determined consequence which makes sense. You own the car, so you have control over it. If the child owns the car, then you are in trouble, so my advise is to not allow a teen to own his/her own car, unless they have already shown themselves to be responsible.
    Good luck.

  6. Suswight says

    ?: In reviewing the stages you discussed regarding tic progression I had a question. You had mnetioned often between age 10 and 15 the tics can be at their worse. My sons progression sterted very easrly with complex motr tics at age 3. Is it likely he will hit his “worse years” earlier? He is 7 1/2 and it has been quite a difficult school years with the oppotional behaviors, OCD, difficulty in social situations, etc..

    There are really no predictions that can be relied upon. I have seen some children who are very difficult to treat from early on (age 3 – 4), who continue to have significant problems well into adolescence, and others who seem to burn out before adolescence. It really could go either way, though I’d be prepared for increasing tics and co-morbidities, rather than fewer.

  7. Suswight says

    ?: What are symptoms of attention deficit disorder with kids that have chronic tic disorder?

    Symptoms of ADHD in a child with chronic tic disorder appears to be the same as in a child without tics. The core symptoms are hyperactivity (more evident in the younger child), impulsivity and inattention/distractibility. The treatment for ADHD may make tics worse, but not necessarily.

  8. Suswight says

    ?: Since Autism has so many of the same co-morbids, is there a link between TS and autism?

    I don’t believe so, but it is a good question. I do know that it is sometimes difficult to decide if a child has OCD or high functioning autism…

  9. Suswight says

    ?: Awesome presentation. Thank you. I have read opposing views on tic triggers. Some say things trigger tics, others say tics are basically tics and are not caused or worsened by environmental sources. Are things like food additives, caffeine and food dyes triggers? How about environmental triggers? If my child has simple vocal or motor tics and they are replaced by complex vocal or motor tics, does that mean his Tourettes is worsening?

    Probably both viewpoints are valid, though I do know that stress (anxiety producing situations) and anticipation (“Woo hoo, we’re going to Disney World!”) can trigger tics. Also, when a child experiences any respiratory symptoms (allergic or infectious), they are more likely to have prolonged mannerisms consistent with those repiratory symptoms. For example, if a child gets a cold and sniffs frequently, they seem to continue with the sniffing mannerism long after the physiologic need to sniff (i.e., mucusy nose) has resolved; then we call it a tic.

    And with regards to simple tics being replaced by complex tic, Well, it could be that his Tourette is getting worse… or it is just “morphing”…

  10. Suswight says

    ?: How do you address a child’s realization that they have these extreme feelings of anger? My 11 year old just asked to talk to me a few nights ago. She said “sometimes I just get so angry and I can’t stop it and I don’t know why.” She has had these episodes of rage before, but was somewhat unaware. Now, she is very much self-aware and afraid of what is happening. Do the psychological symptoms also tend to fade after 15 years also?

    Wow, isn’t that a wonderful thing that she is maturing and is now able to identify that her anger is just “there”, not necessarily caused by an external occurrance. First, I would praise her to the skies that she is maturing; then I’d suggest that she continue to use what she is learning about herself to understand the “anger reaction” and “soften” it. This can best be done with psychotherapy concentrated on developing insight. Over time the anger does fade some, but I conceptualize the process mostly as the child, in maturing, “heads off” the anger reaction by rationalizing it away.

  11. Suswight says

    ?: There was a book you referenced on OCD by “Tamar..” can you repeat the name?

    The books on OCD and panic: Tamar Chansky, PhD wrote “Freeing your Child from OCD” and “Freeing your Child from Anxiety”. You can probably check them out at your library or order them from Amazon.com (or Barnes & Noble, etc)

  12. Suswight says

    Prognosis for independence in adulthood, is best with coordinated care over the years with the services of psychologists, neurologists, and psychiatrists if necessary. We in Neurology can address the tics and sometimes the ADHD issues, from a medication standpoint. Psychology addresses behavioral issues and helps the parents to figure out logical consequences for various behaviors. Psychiatry address the ODD, OCD, depression using medications.

    Unfortunately, there is no generally recommended logical consequence for ODD behavior, but instead the consequences need to be designed for YOUR child based on his likes and expectations. For example, if you decide to withold allowance for a child who is oppositional, but he already has his own job, it doesn’t mean much. The bottom line is you have to find something that MEANS something to the teen. Then the trick is to present the consequence as “if you would like this privilege, then you need to earn it by…; if you don’t earn it, you don’t get it.” Once decided, it should not be reversed for any reason, so be careful what you choose as a consequence. For it to be logical, means it needs to make sense as a consequence of the behavior in question…

    Hope that helps.

  13. Suswight says

    Drugs for OCD making tics worse…Anything is possible, though that has not been my experience. Usually, when the anxiety associated with OCD is lessened, the tics seem to decrease as well.

  14. Suswight says

    Regarding the question about the child being in Special Ed, I can’t answer your question without taking a good hard look at her Child Study Team evaluation with IQ testing, and her IEP. Special Ed has goals for her; if she easily meets those goals, then it may be time to take a look at alternatives.

  15. Suswight says

    Meds for ADHD, OCD and Tics. So your child has what I refer to as complex Tourette syndrome, meaning that although we would really like for a single med to work, it is less likely.

    In a case like this, I usually have to assess which disorder is causing the most problem and begin to address this first. For example, if he has really BAD impulsivity, his tics are not at all problematic, and his OCD is more “worry”, I would probably start him on something that is likely to decrease his impulsivity. Stimulant meds are the “gold standard”, but may make his tics worse, and are likely to increase his anxiety, so I’d probably not use them first.

    If the tics are most problematic, but the child still has considerable anxiety (with OCD mannerisms) and ADHD symptoms, the adrenergics (guanfacine and clonidine) can be useful. They tend to decrease tics, decrease anxiety (a little) and soften ADHD symptoms as well.

  16. Suswight says

    Dan Legoff, PhD works with Mark Mintz, MD (a child neruologist) at the Center for Neurological and Neurodevelopmental Health, 1001 Laurel Oak Road, Suite E-2, Voorhees, NJ 08043
    856-346-0005

    He does “Lego Therapy”

  17. Suswight says

    For the child with panic, anxiety and Tourette, the parents are referred to Tamar Chansky’s books, as well as urged to find a psychologist who is skilled with cognitive behavioral therapy (CBT). You can start with your insurance company (ask for a list of therapists who do CBT, though they may not even know the term), and then start calling them one by one. When you talk with a prospective therapist, ask them if they have experience helping children with Tourette and panic, using CBT. If/when you find NONE of the psychologists on the insurance list have such experience, call your insurance company and ask for “in-network benefits for an out of network provider”, as they have no one on their list who is qualified to help your child. You MAY get the benefits; you may not. In the end, many parents consider it an investment in their child’s future to just pay out of pocket for psychological services.

  18. Suswight says

    Risperdal and Zoloft have been used in combination for years. I know of no particular issues with the combination, though each medication has its own list of side effects. They have been helpful for many children, with relatively low risk.

  19. kteabo says

    Thank you for participating in our Wednesday Webinar “A Nurse Talks About Tourette Syndrome” presented by Susan Wightman-Hentz. The Chat Forum with questions being answered by the presenter, which was available for 7 days following the webinar, is now closed.

    We look forward to having you join us for our next Wednesday Webinar. As always, if we can be of help to you or your family, please call the NJCTS office at 908 575 7350 or email us at info@tsanj.org.

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