Epilepsy Awareness Month
Thousands of parents waited anxiously to access the hottest thing on the market for their little ones. However, they weren’t waiting in line for the newest hyped-up toy, but for a remarkable new hemp-derived cannabis strain that would offer the most anticipated relief imaginable. The waiting list was long, but these parents were desperate to access Charlotte’s Web. This cannabis cultivar (bred by the Stanely Brothers) is a hybrid, CBD medical marijuana strain composed of roughly 12% CBD and 1% THC. It is a non-intoxicating cannabis strain that was about to hit the Colorado market and become widely available to parents, like those of Charlotte Figi, who had reached the end of all hope, as no other medication could save their daughter from near death due to Dravet syndrome (DS), a drug resistant form of childhood epilepsy.
DS, formerly referenced as severe myoclonic epilepsy of infancy (SMEI), “is a genetic epilepsy, characterized by temperature-sensitive/febrile seizures.” This treatment-resistant epilepsy begins in the first year of life and makes noticeable differences in childhood development.
Parents flocked to Colorado, one of few states that offered medical marijuana at the time, in hopes that this non-intoxicating herb would also relieve the spasms and seizures of their own children. “Epilepsy is a very complex neurological disease. The lack of a full effective pharmacological treatment despite the availability of a large number of anti-seizure medications (ASMs) and the risk of developing drug-resistant epilepsy are relevant aspects of this disease. In terms of etiology, epilepsy can have a structural, genetic, infectious, metabolic, immune, or unknown origin, although the origin of epileptic seizures is a multifactorial phenomenon.” Some children battling epilepsy have seen a drastic turnaround and reduction of seizures after medicating with Charlotte’s Web.
What are the common concerns associated with Dravet Syndrome (DS)?
- Prolonged seizures
- Frequent seizures
- Behavioral and developmental delays
- Movement and balance issues
- Orthopedic conditions
- Delayed language and speech issues
- Growth and nutrition issues
- Sleeping difficulties
- Chronic infections
- Sensory integration disorders
- Dysautonomia, or disruptions of the autonomic nervous system which can lead to difficulty regulating body temperature, heart rate, blood pressure, and other issues
Today, parents praise the many health benefits of CBD, from relieving insomnia, anxiety, spasticity and pain to treating potentially life-threatening conditions such as epilepsy. “Evidence obtained from preclinical studies highly support CBD’s anti-seizure effect, which involves neuronal excitability modulation throughout different mechanisms.” Studies like these offer critical findings in support of providing children with DS the outstanding support of CBD, “extend the scope of CBD treatment to autistic-like behaviors, and provide initial mechanistic insights into CBD’s therapeutic actions.”
How might medical marijuana help with Dravet Syndrome?
- Reduce frequency of seizures
- Reduce duration of seizures
- Reduce severity of seizures
- Prevent brain damage caused by seizures
- Reduce Autistic-like social deficiencies
- Prevent death due to consistent, uncontrollable seizures
Aaron Klepinger’s Family’s Charlotte’s Web Story
Aaron Klepinger was one father who uprooted his family and moved to Colorado in hopes to save his son, Hunter. Today, Mr. Klepinger considers medical marijuana a miracle cure for his 8 year old son, as he proclaimed that the daily dose of CBD oil that was administered to him effectively reduced the epileptic episodes, “from as many as 100 times a day to as few as two a week.” Like most children with DS, the pharmaceutical drugs that were being administered were simply ineffective. On top of that, Hunter’s seizures were so extreme that Aaron and Hunter’s mother, Dawn believed that they were possibly causing brain damage. Not only were the prescription drugs ineffective, Hunter was spending his days either screaming, sleeping or trapped in unending seizures. The parents believe that the medical marijuana was so effective that it offered him the opportunity to thrive and be a cheerful, alert youngster, like others his age. In an interview, Aaron was asked if he believes that the CBD extracted from the popular medical marijuana strain Charolotte’s Web could save Hunter’s life, he replied, “absolutely, I think it can.”
After the testimony of so many parents like the Klepingers and the Figis it became impossible to ignore the miraculous results they were experiencing with medical marijuana. Epidiolex was developed and approved in June 2018; it contains the hemp-derived cannabinoid, CBD and comes in a purified, oral solution. “In a study of 120 children and teens with Dravet syndrome, 43% of those treated with Epidiolex had a greater than 50% decrease in seizures compared to 27% of those treated with placebo.”