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Dravet Syndrome in New York

Recent studies have shown that medicinal cannabis can be effective in reducing the symptoms of Dravet syndrome.

Dravet Syndrome

Dravet syndrome is a rare and incurable type of epilepsy. Also known as Severe Myoclonic Epilepsy of Infancy, or SMEI, onset usually occurs around six months of age. These infants typically develop other types of seizures as well, including atypical absence, myoclonic eyelid, and non-convulsive seizures. Other types of seizures may also emerge during the child’s second year. Initially, the child’s development is on track, but then it plateaus and progressively begins to decline during the second year of life. These patients typically have a higher incidence of sudden unexplained death in epilepsy or SUDEP. They often have other associated conditions, which must be properly diagnosed, treated, and managed. Seizures also occur in the absence of typical triggers such as fever, illness, or high ambient temperatures. The seizures are resistant to treatment and are frequent. Many times, multiple drug therapy is necessary for an acceptable quality of life and seizure control. Dravet syndrome is a spectrum disorder, meaning that the course of the disease varies with each individual. Treatment must be unique to each child. Because it is common for the types and numbers of seizures to be constantly changing, there is no established treatment protocol. Medical imaging techniques such as EEGs and neuroimaging are additional tools that are useful in the confirmation of a diagnosis of Dravet syndrome.

Conditions Associated with Dravet Syndrome

  • Cognitive, emotional, and behavioral delays
  • Impaired mobility and balance
  • Delayed speech and language acquisition
  • Problems with bone growth and formation
  • Delayed growth and nutritional uptake issues
  • Difficulty sleeping
  • Sensory integration dysfunction
  • Chronic infection
  • Autonomic nervous system dysfunction (regulation of basic body functions such as sweating and internal temperature control)

Medical Marijuana as Part of a Dravet Syndrome Treatment Plan

Dravet syndrome is one of a handful of childhood epilepsy disorders that cause decreased quality of life, delays in neurodevelopment, and frequent seizures. The condition is generally resistant to traditional treatment methods, and parents rely on alternative treatments to help their children. The use of medical marijuana to control seizures and other symptoms came into the public eye when a Colorado family worked with a medical marijuana dispensary to develop a strain with high levels of CBD and reduced levels of THC. The success of treatment for the girl’s seizures and other symptoms opened the door for other Dravet syndrome patients who were given access to the strain now known as “Charlotte’s Web.”

Providing children with medical marijuana products remains a highly debated topic, but for parents, medical marijuana succeeds where traditional treatments give little to no results. In 2013, Stanford University Department of Neurology published findings of a survey of parents who rely on the high CBD/low THC strain of medical marijuana for their children’s treatment-resistant epilepsy disorders, including Dravet syndrome. Responders indicated that, on average, 12 prescription treatments had failed to control their children’s symptoms. Approximately 84% of the respondents reported reduced symptoms with CBD-enriched cannabis products, including complete cessation of seizures in 11% of children, seizure reduction by 80% in 42% of children, and 32% of children experiencing a 25% to 60% reduction in seizures. Parents also noted other improvements, such as improved mood, sleep habits, and alertness. Noted side effects of marijuana use included fatigue and drowsiness.

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