In Mira's case, we have tried everything the pharmaceutical industry and the medical profession have to offer. Over the past 9 1/2 years, some medications seemed to help in subtle ways, but never in terms of seizure control or normalizing her EEG. Other medications considerably worsened her condition and symptoms. Felbatol, acetazolamide, and a host of others were horrible medications for her, causing extreme irritability and increased seizure activity. If you have ever read the side effects and literature associated with all pharmaceuticals, you would be mortified about giving them to your child. Most, if not all mass-marketed AEDs have not been tested on children and it is clearly stated on the pamphlet that comes with your monthly dosage. Pharmaceuticals can be addictive and dangerous. The CDC offers their annual findings on pharmaceutical overdoses and the percentages of those that involve pediatric care.
Pharmaceuticals work for many people and I am certainly not anti-medication nor anti-establishment, but I can assure you that no pharmaceutical has ever worked for Mira. We have assumed the risk with trying different medications, often multiple at a time, but we have lost all hope with trying another one with a very specific, isolated mechanism of action.
Is cannabis the answer for Mira? I don't know but she should have the choice to have access to at as a minimum. I am optimistic about the potential of cannabis to help stop the needless suffering of so many people from debilitating diseases and syndromes. In terms of epilepsy, the efficacy rates for CBD only extracts are very promising and I imagine that an increased scope of CBD/THC access will have an even larger positive impact. Mira deserves to have cannabis as a medicinal option.
The first step in gaining access legally is through legislation and lobbying. As I had stated in a previous post, I am part of an advocacy group that is supporting a compassionate care bill for the medicinal use of cannabis, Senate Bill 9 (SB9), that needs to be put in front of the Kansas legislature and passed as soon as possible. The bill has died in committee in both 2013 and 2014, but this year we hope will be different. There is solid public support in Kansas and it is just a matter of time before legislation, whether it be medicinal or full legalization, is demanded by the people.
I will be attending a reception in Topeka this Thursday, with several other support groups, including Bleeding Kansas, KC Norml, and Kansas for Change, Inc. to help generate support and exposure for the bill. If you are in Kansas and wish to help support, please join us by attending. The details are on the flyer above and please email me at firstname.lastname@example.org if you need additional information.