On April 7, 2020, Charlotte Figi died.
If you think you’ve heard of her before, you’re not mistaken. Charlotte’s Web, yes, the marijuana strain, is named after her. You also may have known her story if you watched the documentary “Weed.”
Now, if this is the first time you’re learning about her, it’s okay. Long story short, she had Dravet syndrome, a form of epilepsy that doesn’t respond well to the usual seizure medications.
That said, let’s talk more about Dravet syndrome–what it’s like, how it’s treated, its connection to cannabis, and more.
Table of Contents
1. What Is Dravet Syndrome?
A lifelong condition that begins in infancy, Dravet syndrome used to be called PMEI or polymorphic epilepsy in infancy.
Most people with Dravet syndrome experience their first seizure at the average age of 5.2 months old. It’s possible, though, for symptoms to develop later (around 18 to 24 months).
Out of 10 people with this syndrome, 8 have a gene mutation in SCN1A. Keep in mind that it’s a new mutation. Children with Dravet syndrome don’t inherit SCN1A gene mutations from their parents.
2. What Is It Like?
Frequent and prolonged seizures are characteristic symptoms of Dravet syndrome. Those with the condition also suffer from other forms of seizures, including tonic-clonic and status epilepticus.
As children with Dravet syndrome grow older, developmental delays and behavioral concerns become apparent. They also experience chronic infections, sleeping issues, and other health challenges.
3. How Is Dravet Syndrome Treated?
Dravet syndrome treatment involves medications, rehabilitative therapy, vagus nerve stimulation, and lifestyle changes.
Currently, there are three FDA-approved drugs for Dravet syndrome: cannabidiol (CBD), fenfluramine, and stiripentol. Doctors may also prescribe other anti-seizure meds to control the frequency of seizures.
For developmental delays, occupational therapy, physical therapy, speech therapy, and behavioral therapy can help. Another intervention, vagus nerve stimulation (VNS), uses an electrical device that sends signals along the vagus nerve to the patient’s brain. As for lifestyle changes, following a keto diet is recommended, along with avoiding common seizure triggers.
4. What’s the Outlook for Patients?
There’s no known cure for Dravet syndrome, but the right treatment plan can help reduce symptoms if the patient gets diagnosed early. It can also address developmental delays asap, thus improving the patient’s quality of life.
A high percentage of children (80 to 85 percent) with Dravet syndrome reach adulthood. However, families should remember that sudden deaths are possible, so constant monitoring and care for the patient is necessary.
5. How Are Dravet Syndrome and Cannabis Linked?
To anyone asking, “Does weed help with seizures?” it’s worth looking into Charlotte Figi’s story.
After taking CBD oil regularly, Charlotte’s symptoms started improving. Though she still experienced seizures, the frequency declined, and she could play, eat, etc., as other kids do.
Keep in mind, however, that the FDA doesn’t approve Charlotte’s Web products. The only CBD product with FDA approval is Epidiolex, which currently doesn’t have a generic form.
Hope for Epilepsy Patients
While Dravet syndrome prognosis may not be as good as other conditions, families shouldn’t lose hope.
You can check out new research on Dravet syndrome online or join support groups for epilepsy patients.
For more information on CBD, don’t hesitate to check out our other posts.
