Taylor is a 10 year old little girl who will melt your heart with her smile. She is well known where ever we go. The cashiers at our local grocery store and the servers at our favorite local restaurant all know her by name. We liken her to Norm from the TV show Cheers. We walk in a room and are welcomed by a chorus of “TAYLOR!”
Taylor has a congenital brain malformation of unknown origin. She is non-verbal and has severe physical and cognitive disabilities. She was a seemingly typical baby when we brought her home from the hospital. We had no indication of any problems; however it didn’t take long for us to start noticing that things didn’t seem right. Taylor was developmentally delayed and by the time she was 4 months old we started the process of determining what was wrong.
Taylor had her first EEG at 7 months old which showed non-stop seizure activity. Although we never saw any evidence of a physical seizure, she was placed on her first AED, Topomax. At that point, we were actually relieved. We seemed to have found our answer. Through therapy, Taylor started making progress towards achieving milestones.
At 15 months, Taylor had her first Tonic Clonic (TC or Grand Mal) seizure. It lasted over 30 minutes and required the EMS team to administer two doses of Valium. In the Emergency Room she stopped breathing from the combination of the Valium and being post ictal. That was our first real experience of epilepsy and of what we would be face with in Taylor’s life. We added another AED, Keppra and from that moment on Taylor’s development slowed to a snail’s pace.
Taylor was eventually diagnosed with Lennox Gastaut Syndrome, a rare form of epilepsy. She is now on 3 different AED’s. Her TC’s are mostly controlled to 2 to 3 a year, she still has smaller partial seizures every couple of weeks. These typically come in clusters of 3 to 5 or more. She has absence seizures several times a day. We’ve tried several different combinations of drugs and have already deemed some ineffective. She is maxed out on the dosage of one of her current medicines so it is only a matter of time that it will become ineffective. Every time a new drug is introduced we battle with horrible side effects.
Even with the medicines, Taylor has never been seizure free for more than 30 days. We feel that the medicines and the frequent seizures have affected her development. Although she is 10 years old, she is developmentally and cognitively at about a 2 to 3 year level.
We would love the chance to try an alternative to this medicine roulette. We have seen how cannabis has provided relief from seizures and even cognitive improvements for other children. Taylor deserves the chance to try. All of the children suffering from severe epilepsy deserve this chance.