Meet Noah. Born in 1998, he is a 16 year old young man with a catastrophic form of epilepsy called Dravet Syndrome. Noah started having seizures at 5 months old. The first seizure he had lasted nearly 3 hours and he was airlifted from Cheyenne, WY to Children‘s Hospital in Denver, CO. After a week in the hospital, numerous lab tests, x-rays, MRI and CT scan, the doctors said all was normal and it was probably just a one-time event. Little did we know at the time this would become a “normal” life for us.
Over the next 10 years we tried at least 15 different medications in various combinations trying to get control of Noah’s seizures. As the medications changed, so did the seizures. Some of them would result in a Cinderella effect, leading us to think he was finally getting better, only to have it all come crashing down with another bout of prolonged seizures, trips to the ER, and more medicine changes. Some would need to be discontinued due to the devastating side effects. When Noah was 3, he had the Vagas Nerve Stimulator implanted. The VNS is like a pacemaker for the brain. It can also act to stop seizures in progress when a magnet is passed over it to give an extra jolt to the Vagas nerve. Success with this device was minimal at best and never was able to stop a seizure in progress. The VNS remains in his body but has since been shut off. Eventually we tried the Keto diet which also failed miserably. Noah continued to struggle and was induced into a coma on 2 separate occasions to stop his seizures. When we ran out of options, we decided surgery was the only thing we had left to try. A week before his 9th birthday, Noah had a Corpus Callusotomy. That’s a surgery that divides the right and left hemispheres of the brain. While the surgery did help his drop seizures, the generalized tonic-clonic, or Grand Mal, and myoclonic, or Petit Mal seizures continued to wrack Noah’s brain and body. At his worst, he was having hundreds of seizures a day.
In 2008, after attending our first Dravet conference in Chicago at the recommendation of Noah’s epileptologist, we got the results to a genetic test. Positive for SCN1a gene mutation. Dravet Syndrome. We now had a name for Noah’s condition. But that just meant more changes in medication. More questions than answers. We went on a medication from France that was only available through 1 pharmacy in the US which is in New York. And while it had its benefits, the drug also had its down side. First of all, our doctors had no experience with the drug. Dosing proved to be quite a challenge. Too high, too low. And then there was the side effect of loss of appetite. Slowly, Noah was losing strength, failing really. What food he was taking in, he wasn’t able to keep down. He was sleeping all the time and lost 10 lbs in a short amount of time. Eventually, he could not even keep his meds down. Again, out of options, in 2009, we decided to put in a feeding tube. Over the next couple years, with good nutrition and dialing in the medicine dosages, Noah improved to the point of having 4-8 seizures a month, from the hundreds a day.
Now, growing into a young man, Noah’s seizures are once again getting worse. He also has osteopenia, ataxia, growth hormone and testosterone deficiencies, anxiety, and has had kidney issues.
Noah functions at the level of a 2 yr old. He loves to play ball and watch Barney and Teletubbies movies. He got to meet Barney in April 2013 through Make a Wish Foundation. This was truly a highlight for him
Currently, Noah is having lots of myoclonic seizures on a daily basis and generalized tonic clonic seizures almost every day. He can no longer get up by himself and any sudden movement can cause a seizure. While his seizures may not be as bad as they once were, they are stopping on their own without intervention or trips to the ER, there is vast room for improvement. That is where CBD comes in. That will be the next chapter in Noah’s story…