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When I was born, I was a healthy baby, but my quality of life soon changed for the worse.
I had my first seizure when I was 6 months old. It lasted 30 minutes. Every seizure after that one got longer, and more intense.
My parents were desperate for help.
Soon, I started to suffer with grand mal seizures, and by the time I was 8 years old, my parents said that I was suffering from around 200 to 300 grand mal seizures a week.
When my parents brought me to the hospital after my first seizure, the doctors where baffled. While they did everything to help me and I went under every test the doctors could put me under, yet still, doctors couldn’t find anything out of the ordinary.
Every test that the doctors ran, came back normal, so trying to find a cure when there was no diagnosis was clearly impossible.
The seizures became a lot more apparent, and longer lasting.
Eventually, one of the many doctors that had seen me managed to come up with a possible diagnosis, which was Dravet Syndrome, previously known as severe myoclonic epilepsy of infancy (SMEI). This form of epilepsy is rare and the seizures also trigger high fevers.
It is said that this type of epilepsy occurs when the patient is 6 months old, the same age I was when my parents started to notice seizure activity. The types of seizures that I suffer with due to Dravet Syndrome are:
The complexity of my diagnosis, and of Dravet syndrome in general is very difficult to manage and treat. I had gone through speech therapy and cognitive rehabilitation through psychomotor, while also taking anticonvulsant medication Topiramate (Topamax).
By the time I turned 16 years old, these treatment options reduced my seizures, however they were still regular, and still uncomfortable.
My mother and father worked part time jobs, and juggled different shifts so that while one was away the other was able to care for me. My father, in particular, was desperate to help me. Since there were few treatment options available, my father often prayed to the Lord to help him to find an alternative treatment.
My parents researched constantly. They were both so desperate to find something – anything – to try and help me. Eventually, they came across the ketogenic diet (high fat, low carbohydrates), which is said to reduce the amount of seizure activity. This worked for me, surprisingly. At first, I didn’t think that something as simple as a dietary change would help combat my seizures.
However, over prolonged use, I began to suffer with side effects. My immune system weakened and I suffered some bone loss, and even endured behavioural problems. I was a good child, raised in a Christian home. However, the behavioural issues that arose made me look like a bad child, and it also really affected my parents.
Once again, my parents were left desperate. So, my parents went back to the drawing board. The more my parents researched, the more it seemed that they were approaching dead ends. Until one day, my father came across an article online about a little girl who also suffered from epilepsy, and her parents treated her epilepsy with cannabis.
At first, my parents where skeptical, which is an obvious reaction. What parent wants to give their child cannabis, even though it’s natural and an herb? Especially those who practice their religion daily. Desperate, we sought out a doctor’s advice.
The doctor told us that using cannabis to treat epilepsy, and other aliments (including other seizure disorders) has been shown to help, but that more tests still need to be done. Mostly because there are still unanswered questions in regards to medical cannabis.
The doctor new that my family was in pain, and knew that I needed a better quality of life.
So, my doctor approved cannabis to treat my seizures. My parents and I learned about dosing, methods and the different strains of cannabis. The strains I needed where low in tetrahydrocannabinol (THC) and high in cannabidiol (CBD) – two of the major medical benefiting chemical compounds of the cannabis plant.
I started on small doses and I went a day, seizure free. That one day turned into a month, and now, five years later, at 21 years of age, I’ve suffered from only 10 seizures since I started my CBD oil journey. This is compared to nearly 300 seizures per week!
My parents and I haven’t looked back, even though they assumed that using cannabis wasn’t ok in the churches eyes. I should mention that CBD oil does have some side effects. While it can control seizures and contains anti inflammatory properties, CBD oil can cause drowsiness and a lack of appetite, in my case.
It’s important for you to understand that, while I have Dravet syndrome, I know a few people with epilepsy (different forms than mine) who have tried CBD rich oil, that have said that it didn’t work for them. So, I’d highly recommend that anyone thinking of using CBD to treat their seizures should discuss the treatment options with a medical professional first. But, it’s worth the try, and it has given me a lot of hope.
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