Imagine being flush with the glow of new parenthood when suddenly your perfect 3-month old lapses into a convulsive seizure that lasts half an hour. For parents of children with pediatric epilepsy, the joy of having a child can quickly turn dark with fear and uncertainty about quality of life, and life itself.
But once the harsh reality sets in, it’s time to start being the parent of a child with epilepsy. This is where understanding and hands-on involvement are key.
Seven types of epilepsy, categorized by type of seizure.
Generalized – appear to start in all areas of the brain and have no identifiable onset.
Absence (Petit Mal) – begins suddenly, without warning and usually lasts about 15 seconds. May occur many times during the day; the child appears to be daydreaming.
Myoclonic – myo meaning “muscle” and clonic meaning “jerk”, are defined by a rigid muscle tone and usually accompany another form of seizure.
Tonic – Clonic (Grand Mal) – the patients’ muscles stiffen, they lose consciousness and their eyes roll back in their head. As the muscles tighten, the back arches and the chest becomes tight so it’s hard to breathe, so the lips and face may become bluish. May be accompanied by gurgling noises. Add to this spasmodic jerking.
Atonic (Lennox-Gastaut Syndrome) – Opposite myoclonic seizures, atonic cause the muscles to go limp and the patient to slump or crumble to the ground, increasing the possibility of injury.
Simple Partial (Focal) – begin in one identifiable area of the brain, although they may spread to other areas of the brain. The patient does not lose consciousness.
Complex Partial – occur in an area of the brain that effects consciousness.
Post diagnosis the real work begins; finding the proper medication and the proper dosage to mitigate the seizures. Everyone is different, so the disease effects each person to different degrees, as does the treatment. It boils down to a risk-benefit analysis. What are the benefits compared to the rather significant side effects.
Traditional Treatment Options
Even one seizure is too many, but when your child is suffering dozens a day, reducing them becomes a by-any-means-necessary proposition. Unfortunately this usually involves a frustrating journey through the Western medicinal labyrinth and its pharmacopeia. All one has to do is search “epilepsy medication side-effects” for a harrowing primer on epilepsy medication.
One man’s experience treating his pre-teen son’s epilepsy with pharmaceuticals:
“And while Sam got little help from the many antiepileptic medications that we tried, he endured plenty of side effects. One drug gave him hand tremors. Another made him violent. A third gave him hives. A fourth made him such a zombie that he drooled, while a fifth made him see bugs crawling out of holes in his skin.” Wired Magazine, July 2015
This is terrifying enough when you have a child old enough to rationally console, but when your child is pre-communication, the fear, helplessness and frustration are palpable; for both parent and child.
Here is a partial list of anti-seizure drugs and their side effects:
- Keppra(levetiracetam) – sleepiness, dizziness, and anxiety, although Keppra is usually well-tolerated.
- Lamictal(lamotrigine) – dizziness, blurred vision, insomnia, or headache. A serious rash requiring medical attention can sometimes occur.
- Topamax (topiramate) – drowsiness, clumsiness, slowed or difficult speech and concentration, and weight lossare common side effects of Topamax. Kidney stones occur in 1% of people.
- Zonegran(zonisamide) – drowsiness, clumsiness, nausea, vomiting, and kidney stones (up to 4% of people). A serious rash occurs 1%-2% of the time.
- Felbatol(felbamate) – rare but potentially fatal blood disorder called aplastic anemia.
Treating Pediatric Epilepsy with Cannabidiol (CBD)
Given that cannabidiol (CBD) works in reducing seizures and has comparatively benign side effects (dry mouth, low blood pressure, light headedness, and drowsiness), why is this marijuana derivative so often “the last hope” for patients with epilepsy? Even in states where cannabis is fully or medicinally legal, most physicians are reluctant to prescribe cannabidiol. It should be noted that cannabidiol (CBD), has no psychotropic effects and is not euphorogenic.
Cannabidiol (CBD) Success Stories:
- Mary Louise Swing whose family helped pass the medical marijuana law in South Carolina, was having over 100 seizures in a 45 min period. After her first dose of CBD oil, her seizures were reduced to 19 for the same time period. wyff.com
- Charlotte Figi, diagnosed with Dravet Syndrome at 3mo, was suffering from 300 Tonic – Clonic (Grand Mal) seizures a week. It was not until she was 5, and her parents and doctors had run out of options, did they try cannabis oil. After going through reluctant doctors and tracking down cannabidiol oil, Charlotte was given her first dose. She was seizure free for a week, and settled into an average of 2 to 3 seizures a month. cnn.com
- Seven year old Jayden David of Modesto, CA was on 20 prescription pills a day, but did not experience his first seizure free day of life until he was given CBD oil. He’s now down to one pharmaceutical and CBD oil, with his seizures down by 80%.
Cannabidiol (CBD) Options
There are several new cannabis-based drugs on the market and in pre-clinical tests. GW Pharmacy’s Epidiolex has been given Orphan Drug Designation by the FDA for the treatment of Dravet syndrome and Lennox-Gastaut syndrome.
Early tests on Epidiolex yielded the following:
- Seizures decreased by an average of 54% in 137 people who completed 12 weeks on Epidiolex.
- In 27 patients with atonic seizures (which are commonly seen in people with LGS as well as other types of epilepsy), the atonic seizures decreased by 66.7% on average.
Zynerba’s synthetic CBD Gel, ZYN002 is used as a topical to treat complex partial seizures, which account for 35% of all epilepsies. The second part of Phase 1 trials will be taking place later this year.
There is also a line of products named for Charlotte Figi called Charlotte’s Web Hemp Products, put out by CW Botanicals.
Here’s how the Epilepsy foundation weighs in on cannabidiol (CBD) oil:
The Epilepsy Foundation is committed to supporting physician directed care, and to exploring and advocating for all potential treatment options for epilepsy, including cannabidiol (CBD) oil and edical cannabis. People with uncontrolled seizures live with the continual risk of serious injuries and loss of life. If a patient and their healthcare professionals feel that the potential benefits of medical cannabis for uncontrolled epilepsy outweigh the risks, then families need to have that legal option. Nothing should stand in the way of patients gaining access to this potentially lifesaving treatment.
The bottom line is, don’t wait years to ask your doctor about using cannabidiol (CBD) for the treatment of pediatric epilepsy. Depending on what state you live in, the options vary. Epidiolex is available nationwide, with CBD oil available in states with medical marijuana laws.
Photo courtesy of Mr. Green