34-year-old woman’s seizures drop by 73% for 163 days with chylobinoid
Noel is my 34-year old daughter who began having seizures at age eight. The seizures began out of the blue, she’d been a healthy child and I had a normal pregnancy and delivery. Her first seizure was on February 12, 1992, we didn’t know at the time that it was in fact a seizure because she’s never had a full-blown convulsion. In the fall of 1992 Noel had a brain biopsy and multiple subpial transection in an attempt to stop the seizures that were occurring hundreds of times per day.
She was diagnosed with Rasmussen’s Encephalitis, a debilitating epilepsy syndrome with very poor prognosis and difficult to control seizures. Over those twenty-seven years, Noel has rarely had a day without at least three seizures.
Her seizures have changed over the years, in the beginning they were focal with a lot of mouth and hand twitching. As the years progressed, they increased in severity and strength and she developed tonic seizures, her body stiffens and she falls, usually backwards and hits her head. She’s sustained many brain injuries and bleeds due to the severity of these drops and lost all independence as she must have somebody with her when she walks or use a wheelchair for safety.
Noel continued to have seizures for 27 years, tried and failed many medications including Dilantin, Phenobarb, Aptiom, Felbatol, Keppra, Vimpat, Zonegran, Fycompa and Onfi. Noel has also endured plasmapheresis with IVIG infusion, vagal nerve stimulator implant, and a special high fat diet all to no avail. We’ve also tried CBD products that are available over the internet, including Charlotte’s Web, Palmetto Harmony and Haleigh’s Hope. She showed no improvement with these products so we discontinued their use.
On May 15 Noel began taking the CBDa formulation under the supervision of her epilepsy specialist and improved Noel’s seizures almost immediately. By day three the seizure activity was notably lessened. I can report that as I write this today (October 28, 2018), Noel has been on the CBDa product for 163 days and 121 of those days have been seizure free. That’s a 73% reduction in seizures. It’s like a miracle to us. We started on a very low dose because we were unsure how the CBDa would react with her current medication regime. We’ve titrated slowly over the months and she now remains at a dose of 15mg BID.
The really great thing about the CBDa product is that we have noticed absolutely no side effects. There seems to be no interaction with other anti-seizure medications and we’ve even been able to reduce some of the meds. Typically, her anti-seizure medications cause dizziness, somnolence and increase/decrease of appetite. None of these has occurred with the CBDa product. She also seems to be clearer in her thinking.
As a family, we have such an incredibly improved quality of life. It’s hard to put in to words how difficult the years have been, every minute waiting for the inevitable seizure to occur. We’ve been able to let our guard down a bit and it feels good.
I have been employed at the Epilepsy Foundation of Greater Chicago for the past sixteen years and am engaged with many clients who have very refractory seizures. Statistically, 30% of people affected by epilepsy don’t gain adequate seizure control from the therapies available today. Since FDA approved medication for epilepsy never seems to come quickly enough for those suffering with seizures, it’s my belief that this unique CBDa formulation would be embraced by families coping with refractory epilepsy. An improved quality of life and respite from ongoing uncontrolled seizures is so very important because ongoing seizures can have such devastating consequences. This population of refractory patients is desperate to have better control. There are so many who could benefit from this amazing product and my wish is that each of those people would have the opportunity that Noel has had to try it.
I’d be happy to answer any questions you might have about Noel’s journey.