Sawyer is 3 years old and has Dravet Syndrome.
He had his first seizure 1 hour after receiving his MMR vaccine at 1 year old. He then had another a couple of months later. We were told it was febrile seizures but dreaded it was something much more.
Soon it turned into one hospital stay after another, multiple ambulance rides, 4 flight for life flights. Seizures spiraled into hundreds every single day. He one day had a 10 minute seizure and stopped breathing. Mommy gave him mouth to mouth and he was flown by medjet to Denver.
He tried the ketogenic diet for 6 months and it worked for 2 weeks and then the seizures came back. He had corpus callosotomy brain surgery in November 2013. He was seizure free for 20 days. The seizures came back.
Sawyer started Charlottes Web CBD oil on February 10th 2014. He now has interest in playing on his own when he didn’t before. He catches and throws balls with more control. His attention span has increased. We have been able to wean one narcotic down and continuing until he is completely off it. We are starting to see stretches of 4-5 days of no large seizures. We are keeping hope! February he had 26 large seizures (the only ones we track) and in March he has had 15. Hope Hope Hope!