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Managing Tics and Tourette's: Catch What You Can

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Tics Are "Unvoluntary": Catch What You Can

Tamar Chansky, Ph.D.

Children's and Adult Center for OCD and Anxiety

"You can't hold in a sneeze or a cough forever, that's how hard it is to stop. It's not because I want to, it's because I have to." --Boy in HBO Special: I have Tourette's, but Tourette's Doesn't Have Me.

If we think of OCD as the brain sending too many messages to think about things: e.g., worry about your hands, they're dirty, worry about your religion, you might have sinned, with tics, the brain is sending intrusive messages about movement: blink your eyes, shrug your shoulders, clear your throat! Kids with tics and Tourette's don't want to be ticcing, and often they are not even aware of when they are doing so. Tics are no-fault neurological symptoms, meaning that kids don't do these behaviors on purpose and they can't make them stop just like that. Just because tics are neurologically based that doesn't mean that there is nothing to be done to change them. On the contrary, in the same way that there's lots kids can do to control worries, even though they can't help that worry thoughts come in, kids can't help that tics start, but there are many things they can do to decrease the frequency of intensity of the tics... when they want to.

An important caveat in working with kids with tics is to listen carefully to what they are telling you about their tics. If their tics aren't bothering them, then it is best to let them be. Don't draw attention to it with questions or feedback. However, if kids are experiencing embarrassment, frustration or sometimes even pain from repeatedly completing a tic, it can be very reassuring to let them know that there are some helpful strategies to gain more control over the tics.

Causes: It May Not Be What You Think 

Where do tics come from? Parents often want to know if there is something they or their children have done to cause them, or, if they are a sign of stress. The answer is no, and no again. No one causes tics to come, and while stress (lack of sleep, illness, homework, social pressures) can exacerbate tics, stress can not create tics. As with many medical discoveries, researchers are finding that symptoms are a complex combination of factors, both genetic and environmental.

A surprising but promising line of inquiry is the role of external or environmental factors in the triggering of tics. Such factors as food allergies, cleaning products, even video games may be triggers for some children by way of how the child's brain responds to that event or substance. According to Sheila J. Rogers, author of Tics and Tourette's: Breakthrough Discoveries in Natural Treatments and Founder and Director of the Association for Comprehensive Neurotherapy, with its popular website,www.latitudes.org, there has been a significant increase in tic disorders in recent years that cannot be explained by genetics alone, and environmental factors are implicated. Research has not explored this aspect well yet, but a survey of over 1500 people revealed such environmental triggers that patients and parents can watch for and monitor. They range from certain foods, chemical exposures, stressors, and sensory issues. Parents may wish to look at this trigger checklist to see if any patterns are suggested in their children. http://www.ticsandtourettes.com/downloads/acn_tics_triggers_checklist.pdf An upcoming conference focuses on alternative approaches to treating tics, please go to www.touretteconference.com for more information.

Is it a Tic, Or Just a Phase? 

If we look at any classroom we find that it is the rare children sitting perfectly still, in fact most kids are fidgety, so how can we tell what's a tic, and what isn't? Here are some red flags:

  • Child is unable to stop when behavior is brought to his attentionChild feels frustrated by the behavior but unable to control itChild feels intense anxiety to perform the behavior
  • Behavior is something the child feels compelled to do, not something he chooses to doChild feels intense discomfort or frustration when he resists the behavior
  • Behavior causes physical discomfort (neck strain, sore muscles etc)
  • Behavior interferes with functioning (in the middle of a sports event or test)
List from Freeing Your Child from Anxiety: Powerful, Practical Solutions to Overcome Your Child's Fears, Worries and Phobias.

Tics may be transient, meaning that they are present for a few months and then fade, often to be replaced by another tic soon after. A child is diagnosed with Tourette Syndrome (TS) when both multiple motor and vocal tics are present for more than a year without more than three consecutive months tic-free.

Treatment for Tics and Tourette Syndrome: Habit Reversal 

Habit Reversal Therapy (HRT) is a type of behavior therapy which is effective in reducing tics. While it would be great for kids to be able to stop every tic, it is important that kids understand that working on HRT they will be able to reduce some tics substantially, but they won't be able to stop every tic, thus the motto "catch what you can." The key components in HRT are early recognition that the tic is starting, relabeling the tic urge to distinguish it from other thoughts (my brain is sending me the wrong message, or, my brain should be saying "no" to this message), and using competing responses, what I refer to as "blocking moves" to physically prevent the tic from happening or to make it much smaller and less conspicuous. Competing responses are physical patterns that don't allow you to do the tic, so they replace unwanted behaviors with less noticeable or bothersome ones-for example if you have an urge to clear your throat (loudly and repeatedly), doing a soft swallow or a deep breath instead prevents the tic from happening. In order to identify the best competing response/blocking move, children are asked to do their tic in slow motion (the therapist does it too), or in front of the mirror. Once a competing response is identified, children practice bossing back and blocking the tic for several minutes to help their muscles learn a different response to the cue or urge to do the particular tic.

HRT can be employed when kids get a premonitory warning (a feeling of building tension-think about how you feel before a sneeze) that the tic is coming. This warning sensation is a window of opportunity for a child to employ a blocking move or to do deep breathing as a competing response. If a child just "finds himself in a tic," i.e., there is no warning, then it isn't possible to use HRT to prevent the tic, however, by increasing his awareness, that child may be able to reduce the intensity of the tic or the number of times that it is repeated.

Does My Child Need Treatment? 

Parents struggle with whether their child needs help for tics, whether that will be helpful or if bringing more attention will be more damaging. The basic rule of thumb is to ask your child. If your child tells you that he or she is suffering by the tics either physically or because other kids are responding negatively, then it will be beneficial to seek treatment. Treatment is provided by behavior therapists specializing in tics. Please see the resource guide for referral sources.

Kids with tics and TS are extraordinary, normal kids with busy brains that aren't doing the job to keep certain actions from happening-plain and simple. Having tics should not prevent children from doing what they want to in their lives. Often misunderstanding or judgments by others curtail the child's feeling of comfort and safety in the world. This is where understanding and accuracy come in. Parents can simply explain to others, "He can't help it, but he's trying, it's like a hiccup in the brain. You can help him most by not drawing more attention to it."

One of the children in the HBO Special, I have Tourette's but Tourette's Doesn't Have Me, describes how he talks to kids in his class every year about what Tourette's really is. He calls it the tree of telling. His theory is that if he can tell one person, and they tell one person, that in a year millions of people will understand what Tourette's really is.

Living with tics is a complex undertaking, but it could be so much easier for kids and families if there were greater understanding, acceptance and compassion. Let's all plant the seeds of the tree of telling, it will make a world of difference for kids with tics. In the wise words of another child from the HBO special: "Kids with Tourette's Syndrome are just like any other kid, just with a few disabilities, but overall, we're just like... you."

Links:

www.tsa-usa.org
National Tourette Syndrome Association (TSA)
Source for referrals and information, educational advocacy, and national conference

www.touretteconference.com
Tourette's, Tics, OCD and Depression Natural and BioMedical Approaches for Practitioners, Patients and Their Families
May 23-24, 2009 in Dallas Texas

http://www.youtube.com/watch?v=qjWdnQZGScs&feature=related 
HBO and Tourette Syndrome Association: Learn from the real experts; Kids with TS talk about their experiences. I have Tourette's but Tourette's Doesn't Have Me

www.latitudes.org
Sheila J. Rogers, author of Tics and Tourette's: Breakthrough Discoveries in Natural Treatments and Founder and Director of the Association for Comprehensive Neurotherapy

http://www.ticsandtourettes.com/worksheets.htm?
Worksheets about triggers and how to plan around them from Tics and Tourette's: Breakthrough Discoveries in Natural Treatments

Further Reading:
Natural Treatments for Tics and Tourette's: A Patient and Family Guide by Sheila Rogers (2007).

Treating Tourette Syndrome and Tic Disorders: A Guide for Practitioners. Peter Hollenbeck, Douglas W. Woods, John C. Piacentini, and John T. Walkup (2007).

Managing Tourette Syndrome: A Behavioral Intervention Workbook, Parent Workbook (Treatments That Work) D. Woods et.al.,(2008).

Freeing Your Child from Anxiety: Powerful, Practical Solutions to Overcome Your Child's Fears, Worries, and Phobias. Tamar Chansky (2004). Chapter on Tics and Habit Reversal.

I Can't Stop: A Story about Tourette Syndrome. Holly Niner (2005)Ho

 

Photo credit: Ivan Constantin / Foter / CC BY-NC-ND