Treatment of Tics and Tourette Syndrome
Children who tic or have Tourette's commonly have other problems such as ADHD, obsessive compulsive disorder, anxiety or learning problems. The following should all be considered when deciding on treatment(s):
- Rank the symptoms (tics, ADHD, anxiety, obsessive compulsive behavior, etc.). For many, the ADHD or OCD are more disruptive than the tics. Ask about the impact of symptoms (pain, social / psychological problems, functional interference, classroom disruption).
- Consider nonmedical and medical treatments, starting with the most concerning symptom.
- If ADHD is the most concerning problem, it may still be OK to use stimulants (Ritalin / Metadate / Concerta = methylphenidate; Adderall / Dexedrine = [dextro]amphetamine). Discuss the pros and cons with your physician.
- Do not begin treatment with two drugs at the same time, even if there are two treatable problems. If a side effect happens, it won't be clear which drug to blame. Sometimes one medication can help two different symptoms.
- If learning problems are significant, consider formal neuropsychological testing through the school system or a private psychologist. Although most children with tics have normal IQ, learning disabilities and behavioral problems are still common. Neuropsychological or educational testing can help identify whether certain educational strategies are warranted. Some children who appear to have ADHD actually have other psychiatric diagnoses such as anxiety or depression.
- If a parent has problems with anxiety, anger, depression or substance abuse, it is unrealistic to expect the child's behavior to improve with just medications.
- If behavior problems, impulse control or rages are a bad problem, medicines alone probably won't be enough. Find a well-trained psychologist to help. This may be more important than medications for some kids, and may be needed several different times during the childhood and teenage years. Sometimes, family therapy or parent training may be needed.
Treatment Without Medication
Sometimes, tics can improve without medication. A supportive environment for the child or teen may make tics better. It is best at home to ignore the tics. However, if using the CBIT (Comprehensive Behavioral Intervention for Tics) treatment, then there can be a specific role for family members to play with regard to tics. Allowing a child to just relax and be themselves at home and not worry about the tics is often the best approach.
Nonmedical Interventions that May Help
Helping the person realize they are loved and accepted despite the tics.
- Helping the child “take ownership.” By 4th grade, ideally a child should be comfortable telling adults (teachers, coaches, relatives) and other kids, “I have Tourette's.” Humor can help “I’m having a bad tic day, which tics me off” etc.
Excellence helps prevent teasing. A child who is excellent at music, sports or other activities can feel proud of themselves, respected by others, and this respect tends to enhance self esteem and may reduce mean teasing by peers.
- Convincing siblings, grandparents, all family members that tics are OK. Ignore the tics at home. No teasing about tics by siblings!
- Time outs from class, for example extra bathroom passes or errands to the office, to allow time to “let tics out” outside the classroom.
- Stress reduction, physical activity, good sleep, and generally healthy diet. There are no specific diets or supplements that help tics.
- Video games are not prohibited. However, excessive use should be discouraged.
Medications to Suppress Tics
Tics should not be treated just because they are noticed. Tics are not harmful, and for many children, no treatment is needed.
The decision to treat tics is based on the impact of the tics on the quality of life of the person with the tics. Some kids function fine at home and school despite very frequent tics. It is usually not necessary to treat tics in these cases. Treatment will not eliminate tics in most cases.
Medication for Tics Associated With:
Sometimes frequent tics cause muscle pains or headaches. The sensory feeling that accompanies some tics may be painful. Some children have self-injuring tics (pinching, smacking, etc.).
Social / Psychological Problems
When tics are frequent in children in mid- to upper-elementary grades, teasing and bullying may be problems. Parents of school-aged children should discuss with the child what to say when someone asks about tics or teases. Children may say, "It's just a habit," "It's just something I do," "It's a tic," or, "I have Tourette's." Again, a presentation to the class to help everyone understand the symptoms may help.
For teens, tics may cause or increase moodiness, anxiety, sadness or depression. (Imagine how hard it is for some teens to fit in socially or ask someone on a date. Now add frequent facial tics and you can see why this is difficult for some teens.) Membership in the Tourette Association of America may be helpful for meeting other kids with these symptoms and learning about successful or famous adults with Tourette's.
Research shows that parents are often more concerned about the social consequences of tics than kids are.
When tics are very frequent, they may interfere with reading, writing, speaking, playing musical instruments or sports. Fortunately, this is uncommon. A child may tic while waiting for a pitch; but, once the baseball is pitched, the tics usually disappear while the child focuses on hitting the ball.
Occasionally, a child may develop a very loud vocal tic. If frequent, this can be disruptive to the family and classroom. Fortunately, in school-age children, loud vocal tics are rarely present for longer than one year.
Information About Medication for Tics
- Medicines don't cure the tics. Like treatments for other common problems like asthma, medicines improve symptoms, but don't cure the condition.
- Medicines rarely reduce tics more than 50 percent. Even with medication, tics will likely be noticed by others.
- Adults usually tic less, whether they were treated as children or not. For most persons with tics, symptoms are more severe in childhood than in adulthood. There is no evidence that using medications for tics in childhood increases or decreases the chance of tics in adulthood.
- Choosing the right medicine is a "trial and error process." No single medicine works for everyone, and all medicines have possible side effects. The side effects are sometimes worse than the tics.
- Medications must be taken daily to work. There are no proven treatments which can be used "as needed" on a bad day. Medicines must be taken daily, and may not start to help for several weeks.
- Start low, go slow / taper off slowly. Side effects are less common when we start with a low dose and increase gradually. Once we decide to stop a medication, we taper off slowly, not all at once.
Treatment for Tics and Tourette Syndrome
Tics, even when frequent, are rarely harmful. Just because a person has tics, doesn't mean medication is needed.
Often for younger children, parents are much more upset about the tics than the child is. We do not put a child on medication to make the parents feel better. Tics should be treated if they are painful or disruptive to the person's life, such that the possible benefit is worth the risk.
Medications to Reduce Tics
First-line treatment: clonidine (Catapres, Kapvay) or guanfacine (Tenex, Intuniv).
In our clinic, we usually try clonidine or guanfacine first. They help many children and, most importantly, have mild side effects.
Clonidine (Catapres) and Guanfacine (Tenex)
These medicines both act in the brain. Remember learning about the "fight or flight" response in health class in school? Our brains are "wired" to respond to danger by revving up our alertness, our heart rate and our bodies to either "fight off" the danger or "flee (run away)" quickly. In some kids with Tourette's and/or ADHD, the brain may be over-activated. As a result there is extra movement (hyperactivity and tics), agitation or anxiety, poor attention, and/or poor sleep. Clonidine and guanfacine "turn down the volume" on this brain response.
We start at a low dose and increase at a slow, medium, or fast rate depending on concern about side effects. The final daily dose is different for different children. Clonidine also comes in a patch, where the medicine travels continuously through the skin.
Side Effects of Medications
The No. 1 side effect, by far, that parents call us about is excess sleepiness. For some children, this does not occur. For others, it occurs but may be temporary. For some children, it occurs, persists, and is intolerable. Mood / personality changes (depression), headaches, light-headedness, stomach upset and nightmares occur less commonly. The patch may cause a bad rash.
Other Possible Benefits of Clonidine or Guanfacine
In some cases, these medicines make the child calmer, improve attention, and decrease aggression or tantrums (rages). Both are now FDA approved for treatment of ADHD.
Possible Drug-Drug Interactions
These usually do not cause problems with other medicines. If other medicines have sleepiness, lightheadedness / dizziness, or low blood pressure as a side effect, adding clonidine or guanfacine may make the problem worse. Many children take these in combination with medication for ADHD, OCD, depression or anxiety.
Neuroleptics and Atypical Anti-Psychotics
Neuroleptics are strong medicines used for severe symptoms. Some neuroleptics (Orap, Prolixin, Haldol) and some atypical antipsychotics (Abilify, Risperdal, Geodon, Zyprexa) have been shown to decrease tics. Which to use first is controversial. All have the potential for serious side effects and should be used cautiously by physicians familiar with them.
How They Work
These medicines block dopamine in the brain. Excess dopamine appears to be involved in disorders of excess movement.
We start at a low dose and increase at a slow, medium, or fast rate depending on concern about side effects. The final daily dose is different for different children.
Possible Side Effects of Dopamine-Blocking Medicines
These include weight gain (very common), slowing of thinking, depressed mood, feeling tired / sleepy / sluggish, muscle spasms (acute dystonic reactions), restlessness and dangerous changes in heart rhythm. Additional risks of long term use include tardive dyskinesia, a potentially permanent abnormal facial movement.
Other Possible Benefits of Dopamine-Blockers
For some children, these medicines decrease aggressive, impulsive behavior and tantrums.
Possible Drug-Drug Interactions
These may be dangerous. Certain antibiotics should not be taken with these medications. Always tell any doctor at each visit if you are taking these medications and use the same pharmacy for new prescriptions and refills.
Other Treatment Options
A variety of other medicines, such as muscle relaxants, anti-depressants, and anti-anxiety agents appear to help some patients tic less.
The Tourette Syndrome and Tic Disorder Clinic at Cincinnati Children's is committed to finding more effective treatments for Tourette syndrome. Ask about our research registry, so you can hear about the latest research.
Call Your Child's Doctor If:
- Call for any concerning side effect. However, you may want to hold off calling if the problem is sleepiness, because this may be temporary. If you were given a schedule to increase the dose of medication in 3 days, you may slow this down to increase every 5 to 7 days, without calling us to ask. If you can, try to put up with sleepiness for 2 weeks, and it may go away. Teachers usually understand if you warn them. If you stop the medicine before 2 weeks, you may be giving up too soon on a medicine that will eventually be helpful.
- Call the doctor if the tics are getting worse. You should let us know if tics are getting worse, but it may not be necessary to start, increase, or change medications. The most important factor in deciding about medication is interference. If the tics are more frequent, but aren't causing more problems, then the best approach is to wait it out. Tics increase and decrease, sometimes for no apparent reason. There is no quick fix for tics. Tics often increase when the child is stressed, when change is occurring, or even when there is an exciting event like a vacation coming up.
- If your child develops a new movement, habit or behavior, you may wonder whether this is a tic. Generally, tics should be brief, repetitive, partly suppressible movements or noises, which appear or sound roughly the same each time the child does it. Older children describe an urge to perform the tics. As children get older, they are more prone to other repetitive behaviors that are compulsions (not tics) or to non-repetitive, impulsive behavior. Just because the child says or feels they "can't help" something they just did doesn't mean it is a tic. Some parents make the mistake of thinking that all of their child's behaviors are tics and are out of the child's control. Sometimes, it's just bad behavior. Also, not all swearing is coprolalia (swearing tic). Most of it is just swearing. If in doubt, contact us.
Treatment for ADHD and Tics
The most common concern people have is that stimulant medications for ADHD might worsen tics. This doesn't apply to all children. This concern was first reported in the 1970s and 1980s. Remember, however, that many children have both ADHD and tics, but the ADHD symptoms usually come first. Thus a child may have ADHD symptoms starting at age 3 years and tics starting at age 6 years. If the doctor starts a stimulant in a 6-year-old entering first grade, and the child starts to have tics, it appears that the medication caused the tics, when actually, that child was going to start having tics around that age anyway.
Stimulant medicines for ADHD may produce temporary tics in some children. Lowering the dose or stopping the medicine usually takes care of this if the problem is severe. In some children with tics and ADHD, tics improve on stimulant medication, possibly because improving ADHD symptoms reduces stress. Other nonstimulant ADHD medications can also be considered.
The decision to treat tics with medications is rarely a lifelong decision, since in most cases tics start to decrease in the teenage years. There are generally two good times to taper off of medications for tics:
- Summer time. For many children, there is less stress in the summer. Medicines can be gradually tapered and stopped, just as they were gradually started. Consult with the doctor before tapering off of the medication.
- After age 14 years. Studies show the peak years for tics are 7 to 14 years. We usually try to stop medications in kids over 14. Some children who have been on medicines for years are able to stop at that time.
If you have questions or concerns, contact the Tourette Syndrome and Tic Disorder Clinic, 513-636-4222, firstname.lastname@example.org