At the age of seven, Tyler began to have drop seizures. At first, they were random and only happened about once a week. Over the next year, they became more frequent and included all types of seizures. Tyler’s vocabulary and ability to walk became diminished as he was having 20-60 seizures a day. He was eventually diagnosed with Lennox Gastaut Syndrome, which is a rare and drug-resistant form of Epilepsy.
Over the years, Tyler has tried and failed 12 anti-epileptic drugs, VNS implant and Ketogentic diet. In February 2012, Tyler had gone into status epilepticus, and was having a tonic clonic (grand mal) seizure a minute. Tyler was then transferred to Children’s Hospital where he was placed in a medically induced coma. After 4 days of letting his brain rest, the seizures returned and was placed in a second coma, at which time we were pulled in by the neurology team to have a “quality of life discussion”. It was during this meeting we were advised that he have a Corpus Callosotomy to try and stop the seizures. After being in status for 3 weeks now, and having a Neurologist tell us he was not sure if Tyler would survive, we felt we had no choice. With all others options exhausted, the surgery was scheduled for the following morning.
After living in the hospital for 3 months (7 weeks in ICU), Tyler’s seizures finally stopped, but he was now g-tube fed, completely wheelchair bound, and was on a total of 4 seizure meds. We were thankful that he survived and enjoyed a seizure free summer, and assumed those were a thing of the past.
In September 2012, our hearts sank when we saw Tyler have another drop seizure. Just as before, they were very infrequent, maybe happening once a week. As the months went by, the seizures continued to grow in frequency and we were seeing up to 6 per day. Reality set in as we now know rescue meds do not stop the seizures and have tried all options.
It was the following June when we tried the keto diet once again, and we also heard of Charlotte’s Web. After seeing no reduction in seizures with the diet, we decided to try a natural treatment that was working for others, when nothing else did… CBD oil called Charlotte’s Web. In Oct 2013, at the age of 11, Tyler finally got his first dose of Charlotte’s Web! As I write this, he has only been on the oil for 2 weeks, and still on a very tiny starting dose. We know we will not see the full potential of the oil as he is still on 4 meds, but we are already quite pleased with the small victories we have seen. With time and patience, we have faith that he can be pharmaceutical free and hopefully seizure free! Maybe someday we will even get to see Tyler walk and enjoy eating food again.