The past three years I’ve had to make some of the toughest decisions for my daughter, decisions that were truly life altering and not easy. Skylar was having seizures almost daily, had severe scoliosis, and chronic lung infections. She was on five seizure medications, had a vagal nerve stimulator (VNS), and seemed very lifeless. She had been seeing the same neurologist for over 10 years and while personally I liked him (and felt kind of guilty) I needed to see if there were other options for Skylar.
I had heard of the Rett Syndrome clinic in Cincinnati and figured it can’t hurt to at least go once and see if they had anything to offer, I had felt that Skylar was seeing plenty of specialists and honestly didn’t think the Rett clinic would have much else to offer, but I was happily proven wrong.
We made the trip to Cincinnati (4 hours each way) and met the team headed up by Dr. Standridge, a neurologist. Over the next few months we were weaning seizure meds, changing her VNS, starting the ketogenic diet, and I was seeing more and more of my girl's personality everyday. Meanwhile we were also starting the process of getting ready for scoliosis surgery, which I was terrified of. March 5, 2015, the day of surgery, was the longest day of my life. I talked to many other parents, the surgeon, and spoke to Dr. Standridge on the phone prior to surgery to try and prepare, but still didn’t feel ready. It was a tough recovery and 16 days in the ICU but to see her so straight and tall was amazing. It wasn’t long till I could really see the results, Skylar was more interactive in her environment, holding her head up more, smiling more, and much happier.
Still seeing Dr. Standridge at the Rett clinic every 4-6 months and finally down to only two seizure meds without an increase in seizures but without much of a decrease, I was still hopeful for more. I had heard of cannabis many times and have always been curious if it would be helpful to Skylar. I did some research to find a good reputable product, sent the recommendations to Dr. Standridge, and saved the money. (Cannabis is legal in all 50 states and can be ordered online and shipped to your home, it does not have the psychoactive ingredient in it that marijuana does that gets you high.) Starting Cannabis was a little tricky to get the dosing right, but once I did it’s been amazing. Skylar has been able to wean off another seizure med and is currently only on one, along with her VNS, and half strength ketogenic diet and has less seizures now than when she was drugged up on the five seizure meds. She’s not seizure free, but they are fewer and farther between,she recover more quickly, and we rarely use a rescue med.
Sky has now been on cannabis for eight months. The best feeling is when her teachers/aides/therapists at school tell me they have never seen her happier and healthier, she’s so expressive and social, she’s so quick to respond. I honestly believe if I had not taken the initiative to go to the Rett clinic, life would be very different for Skylar right now. Dr. Standridge and her team have helped turn her life around for the better, and I am forever thankful. Even though I didn’t believe we were getting bad care, I felt that Skylar could be doing better, and I’m so glad we went to the Rett clinic and started this journey.
IMPORTANT Disclaimer: Please remember each and every one of our Rett Girls is different. Please speak with your child's physician before starting cannabis or any other medication, vitamin or supplement.