If you read our blog or you know me either personally or through social media, then you know that our family has a long history of seizure disorder. I’ve been an Epilepsy Momma for 15 years now. Seizures are a huge part of our daily life.
My middle daughter began having seizures at 4 months old. She had a 13 hour seizure at 4 1/2 months of age with 9 gran mal seizures and over 23 petit mals. Through her life, she has been resistant to medication and has had some effect of every medication she’s received. I believe at age 10, she’s on medication 8 or 9 now. Though we can get control with the medication, the side effects have been fairly serious over time. Some have caused delays, some have caused appetite issues, some have just simply not worked.
Recently, the FDA has approved a new seizure medication called Epidiolex. This is a cannabis based medication for those with Dravat syndrome, Lennox-Gaustat Syndrome and Infantile Spasms, which is our diagnoses by gene testing. There have been positive results from the testing of this medication on those with these health concerns. There has been positive results for those who are medication resistant, like my daughter is.
I’m hoping we can discuss the use of this medication for treatment in the future. At this point, the FDA still needs to reclassify cannabis from a schedule 1 drug so that patients who need this medication can use it. This should be done in the next 90 days.
Epidiolex is the first cannabis based medication made available by the FDA and it will help open doors for this medication to become a treatment for many other things in the future. The maker of Epidiolex is GW Pharmaceuticals and you can read more about them and the medication here: https://www.gwpharm.com/healthcare-professionals/research-trials/epilepsy.
You can also find out more about this medication in the local news channels. We are very hopeful for the future of Epidiolex being available to those who have medication resistant Epilepsy, like my daughter. We look forward to learning more about this medication as details and information become available in the future.