Carson's Story

Our journey with epilepsy started in January 2009. Carson was 22 month olds when we started noticing him getting really quiet and having staring spells. While staring, he would get this little grin on this face, a grin unlike his normal smile. We took him to the pediatrician and were told to keep an eye on this behavior, but that it most likely wasn't anything to worry about. How I wish the latter part of that sentence was true. A few weeks later, I noticed Carson's hands trembling and knew something was wrong. The pediatrician referred us to a neurologist. The neurologist ordered an EEG and confirmed seizure activity. We were given an anti-convulsant med and would come back for a follow up a few months later. After no improvement on the 1st medicine, we switched to another med, still no improvement...The second medicine actually made things worse, it turned Carson into a zombie...He wasn't talking as much or even laughing anymore. He was very irritable and his seizures were getting worse. So, we met with his neurologist again and he told us that we were going to try one more med,and if that didn't work, we needed to think about trying the Ketogenic diet. He said once you try one or two meds and they don't work, the chance of another medicine working to control the seizures would be about 10-15%. So, we went home and researched the Ketogenic diet, just in case. The third med worked the best but wasn't completely controlling the seizures, so we talked with our neurologist and decided to proceed with the diet. We were referred to a dietitian and another neurologist at our Children's Hosp. We talked with them and were told that we should at least commit to trying the diet for 3 months, that it takes at least that long to start tweaking the diet to see results. We of course said yes, we wanted to do anything to help our son. On August 31, 2009, we were admitted to our Children's Hospital to begin the diet. Everything went pretty well in the hospital. We left the hospital nervous but also excited to see what changes the diet could bring. The diet was very overwhelming at first, but as the days went on, it became more routine and as soon as we started noticing changes in Carson, there was no looking back. Carson is happier, he is speaking more clearly and his seizures are decreasing. Carson is still not seizure free, but we are only 5 months into the diet and will continue to tweak and tweak. The past year has been a rollercoaster of emotions, and we are hopeful that 2010 will be a year of good changes for our son. The Ketogenic Diet, while challenging, is truly a gift. We are blessed to be able to have the diet to help control Carson's seizures and we are super excited to see him happier. Thank you Charlie Foundation for your help and dedication to our children.