Dravet Syndrome



Ryan was born December 22, 1998. No pregnancy complications. He was born 8lbs 9oz. Perfect Baby Boy. Ryan grew and met all his milestones. At the age of 8 months old Ryan had his first seizure, febrile seizure. We blamed his teething or viral infection for the fever as they ran every test and found nothing. More than likely he would never have another one. 3 months later Ryan had another febrile seizure, ok now its 70% chance he will never have another one. By January of 2000 Ryan started having seizures without fever, Still no reason for the seizures. He started taking his first Anti Epileptic drug, Phenobarbital, Ryan continued to have seizures and continued to meet all his milestones. By the time he was 4 years old he was having seizures that were just out of control. Triggers such as the glare from the sun, sun glaring off the water, over heating, to much excitement, watching out the window of the car. His cognitive delays started to be apparent. His speech was not advancing and he no longer was advancing in his learning. By now we had tried several medicines, ketogenic diet and Vagal Nerve Stimulator. Nothing was working. Ryan was having seizures while he was awake at any given moment.

Ryan continued on this path with no diagnosis. When he was 8 years old the Doctors wanted to see if he was a candidate for brain surgery. We spent a week in the hospital running test after test, EEG, CT Scan Pet Scan, MRI. The results would be he was not a candidate for brain surgery, the seizures were coming from all over his brain. His diagnosis would be Dravet syndrome, a Severe form of Epilepsy that Drugs have little or no effect on the seizures. I really was not devastated as I have been living with this for 8 years and just had become part of our life. My reaction was more like “what do we do next?”. “What is the course of action?” The doctors really didn’t know either but to try the next drug another and another.

Through the years we have tried 17 different drugs, with terrible side effects. One being Topomax that caused him to stop sweating. Lamictal, that I had to sign a waiver saying that Ryan could die if he took this medicine. Keppra, which gave us terrible behavioral issues. He is on one now specifically for Dravet syndrome called Stiripentol, a non FDA approved drug. It has helped but its not the answer. We don’t know the long term effect of these drugs on his body. We have again tried the Ketogenic diet and a new Vagil Nerve Stimultor. Again helps but not the answer. Ryan has had up to 100 seizures a month. Up to 18 seizures in one night.

Ryan is 15 years old now. Getting ready to start high school. Mentally is 3-4 years old. His seizures and medications have caused mental disability. But he is the happiest and most loving young man that you will ever meet. Ryan is on 3 different drugs now, including Stiripentol, Depakote, and Onfi. We are preparing to start the modified Atkins diet. He continues to have 25-30 seizures a month in his sleep. He has recently started have seizures while awake about 1-2 times a month.

Ryan needs to access the Cannabis oil. This is our last hope. I know this is not a cure but it could help him live a better life without or limited seizures. We have tried so many different drugs and therapies that don’t work. We know that cannabis oil could work for him. He needs the chance to try it. He needs a new normalcy to his life. Ryan will always need me, but he doesn’t have to have seizures when there is something that could possibly save his life. I want to see the potential Ryan could have without the interruption of seizures. Cannabis oil could provide that opportunity for him. Thank you for reading our story and please continue to raise awareness for these children.

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