Epilepsy in Children – Why Parents are Turning to CBD

There is a lot of controversy on giving children CBD products or medical marijuana for conditions such as Epilepsy – and rightly so! These are our children, our future, and we want what is best for them.

As a grandparent of a beautiful bright five-year-old boy, I watch his mom, in tears born of frustration because she doesn’t know why there are smiles one minute then aggressive behaviour the next. After many ‘experts’ opinions, consultations, doctors, they are no nearer to what the issue is. She questions whether she is a good mom or the lousiest mom on the planet and it breaks my heart because I know she is the best. Many parents go through terrible anguish where their children’s health is concerned, relying on doctors who may not know what is wrong and still prescribe traditional pharmaceutical drugs to cure them, but, are there other solutions?

A couple in bed with a sick child

I want to talk about Epilepsy and its very profound effect on children and using CBD oil to manage it.

What is Epilepsy?

Epilepsy is a neurological disorder marked by sudden recurrent episodes of sensory disturbance, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. It is the fourth most common neurological disorder and affects people of all ages. Sometimes the cause is completely unknown – 6 out of 10 people. There are two main types of seizures – focal and generalized; focal seizures affect one side of the brain while generalized affect both sides.

How Common is Epilepsy in Children?

In Canada, each year 15,500 people learn they have epilepsy with 44% of those being under 5 and 55% before the age of 10.

In the United States, currently, epilepsy is the most common childhood brain disorder affecting approximately 470,000 children under the age of 17.

About two-thirds will outgrow their seizures by the time they become teenagers.

Current Treatment of Epilepsy and Side Effects

using pills for epilepsy

Anti-Epileptic Drugs (anticonvulsant): These are Benzodiazepines and the most common ones are lorazepam, diazepam, clonazepam, and clobazam.

Side effects – drowsiness, loss of muscle coordination, behaviour changes such as aggression, confusion, nervousness), loss of appetite.

Ketogenic Diet: This diet promotes the metabolic formation of ketone bodies by causing the body to use fat rather than carbohydrates as its principal energy source.

Side effects – frequent urination, low blood symptoms, drowsiness and dizziness, constipation, diarrhea, sugar cravings, muscle cramps, flu symptoms.

Depending on the type of epilepsy, surgery may be recommended.

Charlotte’s Web

Charlotte’s Web (a high strain of CBD with virtually no THC) was developed in Colorado for a young girl, Charlotte Figi, “the girl who is changing medical marijuana laws across America.”

Charlotte suffers from severe epilepsy seizures known as Dravet Syndrome which are severe and almost continuous. Using the high strain CBD oil, her seizures have reduced from over a thousand to a few a month. The strain, Charlotte’s Web, got its name because of its web-like appearance with long thick appendages that wrap around its buds.

Pharmaceutical treatments have serious side effects and lethal dosages whereas the CBD’s only side effect is a feeling of dizziness or potential nausea and has no known lethal dosage.

Preston’s Journey

Charlotte Figi is only one of many children who suffer from severe seizures. A little boy, Preston James, travelled with his family from North Carolina to Colorado, seeking CBD for his relentless seizures. Since he was three months old, he was on a rotation of drugs including Klonopin, Felbatol, Keppra, Zonegran, Topamax, Diamox, Banzel, vitamin infusions, and a special high-fat diet, costing several hundred dollars a month, with little results, and many serious side effects. At 6 years old, Preston was diagnosed with Dravet Syndrome – the same as Charlotte Figi.

Dravet syndrome is a rare, catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/or prolonged seizures, previously known as Severe Myoclonic Epilepsy of Infancy (SMEI); it affects 1:15,700 individuals.

The fight against Dravet Syndrome

In 2012, his mom Ana saw a video on Facebook about a California man who was using medical marijuana for seizures his son was experiencing, and then in 2013 when Preston was 12, she saw a documentary on Charlotte Figi and Charlotte’s Web. This convinced Ana and several other parents of children with Dravet Syndrome to move to Colorado.

Twelve days after arriving in Colorado, Ana was able to get the first dose of Marijuana oil. Read about the incredible journey that Preston and his mom went through to get the oil and the overwhelming results.

Is There Hope for Other Children with Epilepsy

In spite of these two incredible, heart-wrenching stories, there is still a lot of controversy and distrust of CBD to manage epilepsy.

We are still seeing headlines like the following:

“Government rules out granting medical cannabis license to a boy, 6, with ‘death sentence’ epilepsy condition.”

However, there is hope. An FDA-approved clinical trial of Epidiolex (made from cannabidiol for the treatment of Dravet Syndrome) was conducted a few years ago and the results were as follows: 54% of patients experienced fewer seizures while 9 percent had their seizures cease after 12 weeks of treatment. Since then, the trial moved to a double-blind study.

GW Pharmaceuticals announced this year that the New England Journal of Medicine has published results from a Phase 3 study of Epidiolex® (cannabidiol) in children with Dravet syndrome. GW Pharmaceuticals is a British based company founded in 1998 with operations in the US as well as the UK. it is the leader in the development of plant-derived CBD therapeutics and has been working to get Epidiolex approved for drug-resistant epilepsy syndromes. They have announced the acceptance of NDA filing for Epidiolex and expect a decision in mid-2018. There is hope!

(Disclaimer: Please be advised that this is not a medical endorsement.)

UPDATE: JULY 2019

In June 2018, the FDA approved cannabidiol (Epidiolex, an oral solution) for treating seizures associated with  Lennox-Gastaut and Dravet Syndromes for patients aged 2 and over. This is the first drug containing a purified marijuana derivative that the FDA has approved.

Do you have someone in your life who suffers from epilepsy? Do you think CBD oil could be an alternative to pharmaceutical drugs as a form of treatment? Please share your thoughts and experiences below.

2 thoughts on “Epilepsy in Children – Why Parents are Turning to CBD”

  1. It is hopeful to see new options for seizure treatments that do not have so many side effects. The testing and approval processes do take time but are important to rule out long-term issues that may arise. I can only imagine how parents feel to see their children suffer knowing that there may be a treatment that works but not FDA approved. Excellent, educational post, great job.

    Reply
    • Thank you Paul. Yes, I so agree. I was blessed with two kids who just had the regular colds and stuff kids normally get. I never had to deal with anything as heart-wrenching as epilepsy, especially in severe cases. Let’s hope the FDA will step up their game!

      Reply

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