Lexy is 6 years old and she suffers from Dravet Syndrome which is a rare, catastrophic form of epilepsy that is not easily controlled with medication. There is no cure and the mortality rate is high. Not only does each seizure have the potential to be life-threatening, but on a daily basis, she deals with major developmental and speech delays, attention deficit problems, and many behavioral issues. She has tried numerous anti-epileptic medications, some of which have only made her seizures worse. She is currently taking 3 seizure medications one of which is not FDA approved and another that has only been FDA approved for a year.
There was a point in her life when she would have up to 10 seizures a day and they could last up to 3 hours per seizure. We practically lived in the hospital but then we got a great medication that is not FDA approved from France that has made a life changing difference. Now Lexy only has about 4 seizures a month and sometimes less than that and all her seizures are less than 2 minutes. But these miracle drugs that she has been on almost her whole life are known to cause long-term side effects such as liver and kidney damage, among others. One of the medicines is a Benzodiazepine, which is very addictive and can be incredibly difficult to withdraw from. Unfortunately, she will never outgrow Dravet Syndrome. We firmly believe that if her seizures could be controlled without all of these medicines, she might be a completely different child and have a much better quality of life.
Over the past couple of years, we have been hearing a lot about the power of medical marijuana in controlling seizures. The CNN documentary by Dr. Sanjay Gupta has done a lot to raise awareness about this medication. Dr. Gupta does an excellent job of explaining how the plant has both CBD (Cannabidiol which has the medicinal properties) and THC (the psychoactive component that most people typically associate with marijuana). Plants that are high in CBD and have little to no THC have proven to be very effective in controlling seizures. It is not smoked and provides no 'high' for the children and adults that are taking it. It is typically administered in an oil format and we would love for Lexy to try this option.