Tourette Syndrome is a medical condition of the nervous system manifesting in childhood and characterized by tics, which are uncontrollable, rapid and repetitive movements or sounds.
Boys are 3-4 times more susceptible than girls. The age of onset for symptoms occurs between ages 2-12, with the average age of 7. The symptoms do decrease once the individual reaches age 20. While there is no cure, symptoms can be controlled and there is a normal life span associated with the condition.
Prior to the outward display of tics, a child may feel an uncomfortable sensation like an itch, tension or tingling. This is known as a premonitory urge.
Tics can occur even in sleep and intensify during illness, stress, anxiety or when someone is tired or excited. The tics, which intensify during the teens, do improve after age 20. They also improve or lessen when the child is concentrating on a specific activity such as homework.
Generally, tics occur in alternating periods with tic-free behavior lasting anywhere from several seconds to a few hours.
Doctors Who Treat the Tourette Syndrome
There are several types of doctors that are trained to treat Tourette syndrome. However, it is crucial that the physician be asked not only if he/she is well versed in the condition but also is currently treating patients with this disorder as new findings occur frequently.
Physicians that treat this condition are listed bleow in this Tourette syndrome patient education guide:
- General Practitioner - Physician who focuses on prevention, discovery and treatment of illnesses in all age categories. This will be the doctor who oversees and coordinates care between the patient and other specialists on the team.
- Pediatrician - Physician who specializes in the diagnosis and care of illness in children and adolescents. This doctor will rule out other conditions that may mimic Tourette syndrome.
- Psychologists - Professionals trained in the health and well being of both individuals and families. They assess and treat emotional and psychological disorders like depression and mood conditions They can coordinate therapy that will decrease stress and anxiety, thereby decreasing episodes of tics as well as implementing cognitive-behavioral therapy.
- Psychiatrists - Physicians who specialize in the health, diagnosis and treatment of mental, emotional and addictive disorders. Medication is used as well as psychotherapy for treatment.
- Neurologists - Doctors who specialize in the diagnosis and care of the nervous system and disorders associated with it. This doctor can treat Tourette with the latest therapy or medications while ensuring that there are no other neurological disorders present.
How to Prepare for Your Tourette Syndrome Doctor Visit
Bring the following Tourette Syndrome a list of:
- All past medical conditions with dates
- All medications and the dose you take. Include vitamins, herbs and supplements.
- Any symptoms
- Allergies
- Questions for your doctor
For CT Scans or MRIs: Jewelry, hairpins, glasses, and hearing aids should be left home or removed. Do not eat for 6 hours prior to the exam.
For PET Scans: Abstain from eating for 4-6 hours prior to scan and avoid any rigorous physical activity.
Questions to Ask Your Doctor about Tourette Syndrome
From your TS initial diagnosis throughout your treatment and care, you will surely have many questions. Listed in this Tourette syndrome patient education guide are helpful questions for you and your doctor to discuss so you can make informed decisions about your condition.
Questions About My Diagnosis
- Can there be a different condition mimicking this diagnosis?
- Is this condition lifelong or temporary?
- Can it be cured?
Questions About My Treatment
- Is there medication that can cure the condition? What risks and side effects are associated with the treatment?
- Can the medication take away tics completely?
- Are there supplements or vitamins that will help treat it?
- Can my child outgrow the condition without treatment?
- Will the treatment affect my child’s growth?
Questions About My Lifestyle & Family
- Can my child attend regular classes? Will my child have a learning impairment?
- Can my child participate in sports? Are there activities that will make the symptoms worse?
- Are there foods that will improve or worsen the condition?
- Are there supplements or vitamins that will improve the condition?
- Is this condition hereditary? Will my other children get this?
- Are there patient support groups in my area or forums I can participate in?
- Is there printed material or brochures that provide more information? Is there a website that you recommend?
Common Medications and Treatments for Tourette Syndrome
Since there is no cure for Tourette syndrome, treatment is generally reserved for tics that impede functioning and performance of daily activities. If tics are not severe enough to be obstructive, treatment may not be needed.
Certain medications are used to control tics and related disorders such as obsessive-compulsive disorder and attention-deficit/hyperactivity disorder.
| Treatment |
How/Why it Works |
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Neurotransmitter Blockers
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Inhibits or depletes the neurotransmitter dopamine in the brain to lessen tics
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Stimulants
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Drugs with dextroamphetamine increase focus and attention in children with ADHD
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Botulinum toxin Type A injections
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Causes numbing of affected muscle to relieve vocal or simple tics
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Central Adrenergic Inhibitors
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May aid in impulse control and decrease rage attack issues
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Antidepressants
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Controls anxiety, OCD and depression (which can stimulate onset of tic episodes)
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Psychotherapy
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Controls sadness, anxiety and OCD, helps cope with Tourette syndrome
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Behavior therapy
-Habit Reversal Training
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Premonitory urges are identified and response to them is taught which inhibits the tic
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Deep Brain Stimulation
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Electrical stimulation targets areas in brain that control movement with a neurostimulator (battery-operated medical device implanted in the brain) This is still experimental in treating Tourette Syndrome patients
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Common Tests or Labs to Diagnose Tourette Syndrome
The diagnosis of Tourette syndrome is one of exclusion, based on the history provided by the patient and the patient’s family.
The Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association gives diagnostic criteria:
Presence of both motor and vocal tics
Tics must occur consistently for greater than 90 days and nearly daily for greater than one year
Onset of tics must start prior to the age of 18
All other causes have been ruled out (drugs, other medical disorders)
While there is no blood, laboratory or imaging medical tests that confirm the TS, it is imperative to perform tests to rule out other conditions that are linked with tics, especially if they are atypical or occur in adulthood.
| Test |
Why Test? |
What Happens? |
What is Measured? |
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Allergy Testing
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Exposure to allergen may cause sniffing, blinking or tic-like behavior
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A pad containing the allergen solution is taped to the skin for 24-72 hours. A raised area of skin with redness and itch denotes an allergic reaction.
The test may be done by having a drop of solution with the allergen placed on the skin with scratches or needle pricks. If a raised, red and itchy area of the skin develops (wheal), an allergy is diagnosed to that allergen. (Positive reaction)
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No reaction to allergens detected
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MRI
(Magnetic resonance imaging)
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Looking for brain injury, structural abnormality or infection within the brain
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You are asked to lie on your back on a table with head, torso and arms strapped down to prevent movement. The table then slides into the tunnel-like space that contains a magnet.
You may hear banging or tapping noises from the magnet movement but are often offered piped in music to soothe you and mask the noise.
Images are taken in body cross sections.
The test usually takes 30-60 minutes and is painless
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No unusual break in brain integrity or cerebral vessels
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Blood Tests
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To rule out Wilson’s Disease
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After a tourniquet is applied to the upper arm, the puncture site of skin is swabbed with alcohol pads and a needle punctures the skin. Blood is then drawn into a syringe for analysis.
The needle is removed and a pressure bandage is applied to the puncture site.
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Ceruloplasmin
20–50 mg/dL
Total serum copper
80- 163 mcg/dl
Comprehensive Metabolic Panel:
Albumin
0-3yr=2.9-5.5
3y-adult=3.5-5
Alkaline phosphatase
1dy-15yr=80-250units/L
15 yr-adult=30-125 units/L
SGPT=0-40
SGOT= 3-44
Bilirubin
1d-1mo=.6-11.1mg/dL
1mo-adult=.2-1.3 mg/dL
Calcium
1dy-1mo=7.3-11.9 mg/dL
1mo-adult=8.7-10.7mg/dL
Carbon dioxide
1dy-1y=13-22
1yr-15 yr= 20-28 mmol/L
15yr-adult=22-29 mmol/L
Chloride
1dy-1yr=13-22
1y-15y=20-28
15y-adult=22-29
Creatinine
Male=.75-1.2
Female=.65-1.0 mg/dL
Glucose
Fasting=60-99 mg/dL
Nonfasting=60-200
Potassium
1dy-1mo=4-6.0 mmol/L
1mo-adult=3.4-5.3 mmol/L
Protein,total
1dy-1mo=5.3-8.9g/dL
1mo-8yr=5.6-8.5 g/dL
8yr-adult=6-8.2
Sodium=137-147 mmol/L
Urea Nitrogen (BUN)
1dy-1mo=4-12 mg/dL
1mo-15 yr=5-18 mg/dL
15 yr-adult=8-21
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Strep Culture
Blood Test for Streptococcus
|
Rule out PANDAS disorder (Pediatric Acute-Onset Neuropsychiatric Syndrome)
Blood test done (twice with an interval) is done to look for anti-streptococcal antibody titers
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Swab is taken on the mouth and throat and placed on laboratory petri dish for analysis
After a tourniquet is applied to the upper arm, the puncture site of skin is swabbed with alcohol pads and a needle punctures the skin. Blood is then drawn into a syringe for analysis.
The needle is removed and a pressure bandage is applied to the puncture site.
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Culture is negative for Strep.
Titers are negative for anti-streptococcal antibodies
|
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PET Scan
(Positron Emission Tomography)
|
Measures the activity of a mass, lump or node
Used for staging of disease or response to treatment
Distinguishes between lumps and scar tissue
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You will lie on an examination table and an IV may be inserted into a vein in your arm or hand.
A radiotracer may be introduced into your body through the IV or you may be asked to swallow or inhale the substance.
After one hour, you may drink a liquid containing contrast material. A CT scan will be performed followed by going into a PET scanner where imaging is performed. The test will take 30 minutes to 3 hours depending on the extent of tissue or organs to be evaluated.
While the technician checks the images, you must remain on the table because additional images may need to be taken.
Once satisfactory, the IV is removed and you may rise from the examining table.
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No tumors, masses or enlarged lymph nodes.
No increased activity in organs, vessels and lymph nodes
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CT Scan
(Computed tomography)
|
Used to detect enlargement or abnormalities of organs, blood vessels, lymph nodes and soft tissue of the body
|
You will be asked to lie on a narrow examination table. An intravenous needle and line may be inserted. You may be asked to swallow contrast material, which may be slightly unpleasant
Restraints may or may not be used to maintain a still position.
The table then slides into the center of a “tunnel-like” machine. The X-ray tube rotates around you and you may hear banging as imaging takes place.
A speaker and microphone may be fixed into the chamber allowing you to talk and hear the technician as well as hearing piped in music.
When satisfactory images are obtained, the table will slide out of the chamber and you may arise from the table.
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Normal sized organs, blood vessels and lymph nodes with no enlargements, distortions or abnormal shapes or narrowing.
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Written by Barbara Hales, M.D.
