In hope of combating his tics, he was given a cocktail of drugs and two forms of therapy – but the methods all proved unsuccessful.
The symptoms of Tourette’s syndrome usually begin at around seven years of age and become most pronounced at 10–11 years.
The cause of Tourette’s syndrome is unknown. However, it’s thought to be linked to problems with a part of the brain known as the basal ganglia, which helps regulate body movements.
The unnamed youngster, believed to be from Poland, was left suicidal and unwilling to leave his own home because of the brutality of his condition. But his random arm movements and vocal tics almost halved in severity after being given a THC-based oil
In comparison, the average cannabis joint rolled on the street contains in the region of 100mg THC.
CBD-based oils, capsules, edibles and other formulations have become widely used over the last decade and are available throughout the country and on line. One CBD based medicine was approved in June 2018 by the FDA specifically to treat two rare forms of epilepsy, making it the first federally sanctioned medical use for CBD in the United States. The FDA has supported research of CBD-based medications and the NIH database reflects myriad studies of CBD as a potential treatment for neurological and neuropsychiatric disorders including epilepsy, Parkinson’s Disease, dyskinesia, dystonia, and anxiety. Although there is no
evidence that CBD alone is effective in treating Tourette Syndrome, anxiety is known to increase the frequency and severity of tics and testimonials for CBD as an effective anxiety reducing treatment are numerous.
Medical marijuana is not regulated by the Food and Drug Administration (FDA) and is not sanctioned under federal law. However, at the time of this writing, 33 states and the District of Columbia have legalized medical marijuana to treat specific conditions including those that cause muscle spasms, seizures, and chronic pain. Several states have specifically approved medical marijuana for the treatment of Tourette Syndrome including Arkansas, Illinois, Minnesota, Missouri, New Jersey, and Ohio. Still other states permit individuals to access medical marijuana providing a physician certifies that no other medications have provided relief. Medical marijuana is dispensed by state regulated dispensaries, under the direction of a pharmacist, and only after a physician certifies that a patient meets that state’s criteria.
TAA Position Statement on the Use of Medical Marijuana for Tourette Syndrome
Many members of our community have pervasive and painful tics and co-occurring conditions that are not well controlled by current FDA approved options. While there are three medications the FDA has specifically approved for the treatment of Tourette Syndrome, their side effects are significant and they are no longer considered a first option for treatment. More commonly, FDA approved medications are administered off label to children, adolescents, and adults, often effectively but perhaps equally often with adverse, sometimes significant, side effects. The Tourette Association of America recently conducted an impact survey which found that 47% of adults and 44% of the parents of children with Tourette Syndrome do not feel their or their children’s symptoms are adequately controlled by existing medications. We recognize the need for more effective treatments to improve the quality of life for all people with Tourette Syndrome and Tic Disorders.
Inquiries about the use of medical marijuana (cannabis) to alleviate the symptoms of Tourette Syndrome have been on the rise. While some adult members of our community have reported reduced tics when using medical marijuana, others have reported adverse reactions or no effect at all. Medical marijuana has two primary chemical components: Delta-9- tetrahydrocannabinol (THC) and Cannabidiol (CBD). Medical marijuana and cannabis-based medications that include THC and cannabis extracts have been reported to reduce symptoms of Tourette Syndrome in small scientific studies, patient reports, and anecdotal case reports. They are currently used to treat adult patients in Germany, Israel and Canada. There is insufficient data to support that CBD, without the addition of THC, is an effective treatment for Tourette Syndrome.
The absence of federal laws sanctioning medical marijuana nationwide, as well as its classification as a Schedule I drug, precludes large-scale controlled research studies from being conducted at academic/research institutions in America. In Germany, a large placebo-controlled study designed to investigate the efficacy and safety of cannabis in patients with Tourette Syndrome is currently recruiting participants. The TAA supports efforts to allow research on medical marijuana to move forward in this country as well. The TAA also supports a drug schedule re-evaluation for medical marijuana which may open the way for clinical trials to assess the efficacy of potential new medications to treat Tourette Syndrome.
Although there is increasing evidence that CBM might be effective in the treatment of several different conditions, medical doctors often hesitate to use CBM due to concerns of long-term side effects including increased risk of psychosis and cognitive impairment. However, in a recent meta-analysis , it could be demonstrated that in most studies in youth the magnitude and persistence of cognitive deficits of cannabis have been overstated. In the authors’ opinion, reported deficits reflect residual effects from acute use or withdrawal rather than persistent cognitive deficits. In contrast, it is generally accepted that children who start using cannabis before the age of 15 are at increased risk of psychotic disorders . However, until today it is unclear whether observations in healthy children using high doses of skunk-like cannabis recreationally can be transferred to children suffering from neuropsychiatric disorders including TS, who use medicinal cannabis supervised by a medical doctor. Although the database is very limited, so far, increased risk of psychosis has not been reported in pediatric patients treated with CBM [10-12].
In open uncontrolled case studies including more than 200 patients, adult patients with TS often report about beneficial effects of inhaled cannabis . In this case study, both the family’s report as well as the expert clinical ratings suggested that not only THC – as described earlier  – but also vaporized cannabis are effective in the reduction of tics and premonitory urges. Remarkably, even relatively high doses of THC were well tolerated and even improved concentration according to the patient’s report. This observation of good tolerance of CBM is completely in line with reports of good tolerance in studies of CBM treatment as a prevention of vomiting due to antineoplastic treatment [10, 11] and CBM treatment of treatment-resistant spasticity  in pediatric populations. However, based on the short-term treatment in this single case, no statement can be made about long-term (side) effects of cannabis and THC in children and adolescents with TS.
In order to assess immediate effects of vaporized cannabis in this boy, we performed a variety of clinical assessments before and about 30 min after vaporization of 0.15 g cannabis (Amnesia Haze, equivalent to 33 mg THC; at that time, the boy reported a maximum effect; for details, see Table 1). In summary, inhalation of cannabis resulted in an immediate and marked reduction of both tics, premonitory urges, and overall impairment across different observers (self, parents, and clinician). No adverse events were reported or observed.
It should be noted that in this boy treatment with vaporized medicinal cannabis was not initiated and prescribed by the authors, but by the parents before the first presentation in our clinic. This was possible, because both were medical doctors. Keeping in mind that to date only very little is known about the effects of CBM in children, we do not recommend the use of vaporized cannabis in children with TS. However, in the authors’ opinion, in severely affected and otherwise treatment-resistant children, treatment with other orally taken CBM such as pure THC or cannabis extracts should be taken into consideration as a rescue therapy, before thinking about surgical treatment with deep brain stimulation.
The family came self-motivated without referral to our TS outpatient clinic. At that time point, the patient was 12 years old and exhibited typical motor tics such as eye blinking, arm jerks, sticking out his tongue, abrupt leg and abdominal movements, and copropraxia as well as vocal tics such as squelching, throat clearing, rumbling, humming, and echolalia. Further psychiatric evaluation showed mild obsessive-compulsive behavior (touching objects and persons), sleeping problems, and mild self-injurious behavior with self-beating, but no evidence of comorbid attention-deficit/hyperactivity disorder. He had never received any specific treatment for the tics besides relaxation techniques. At first presentation, the parents – both of whom were medical doctors, who had much experience in the treatment of their own patients with different CBM – reported that they had decided to medicate their son themselves with vaporized medicinal cannabis, rather than getting a prescription for an antipsychotic medication or any other kind of treatment or consulting a Tourette expert before. The decision was taken based on their son’s suffering from severe tics and growing inability to fall asleep. So far, the boy had been treated twice with a single dose of 0.02 g cannabis (variety Bedrocan with a THC content of 22% and a cannabidiol content of 1%; the dose was equivalent to 4.4 mg THC). According to the parents’ report, both administrations resulted in an immediate and nearly complete remission of tics so that the boy was able to fall asleep without problems. Neither after the intake nor on the following day did any adverse event occur according to the patient’s and his parents’ report. In order to assess the described beneficial treatment effects of medicinal cannabis in a clinical environment, we invited the family to come for a second visit.
Clinical assessments before (baseline) and after an interval of 30 min following cannabis inhalation (follow-up) in combination with oral THC