Sidney is our five year old daughter that is a victim of shaken baby syndrome, caused by her birth mother. The doctor said it was a miracle she survived. When she was almost two years old, she started having countless head drop seizures every day. After two years of numerous trips to the doctor, trying ten different medications and surgery, the seizures continued. She had to wear a helmet, she was in a wheelchair, she could barely take two steps at the most. We desperately kept searching to find some way to help her. We prayed and prayed. And we had so many people at different churches praying for her.
One day I felt the urge to watch a movie called “First Do No Harm” - a story about a boy with severe epilepsy unresponsive to anti-seizure medications but still suffering from the medications’ terrible side effects. After watching that movie I couldn't believe how our lives were so similar to that portrayed in the movie – so much in fact I felt like we were watching our own lives. In the movie, the boy found a miracle in an alternative treatment called the Ketogenic diet. My husband could not believe that food could actually have anything to do with helping seizures. We went to a hospital out of town to try to get her started on the Ketogenic diet – hoping it would be Sidney’s miracle too. When we arrived the doctor wanted to do brain surgery. She had just been through a surgery that did not help her. The doctor refused to start her on the diet on the belief it would not work for her - and sent us home. We did not let that stop us. Sidney went on the Ketogenic diet in 2005 and became seizure free for 3 years. Unfortunately, the seizures came back. We have since then tried five more anti-seizure medications to help control Sidney’s seizures, and none of them are working. We have exhausted all pharmaceutical treatment options.
Than we saw the CNN special “WEED” - a documentary in which Dr. Sanjay Gupta shares evidence of the success of high CBD/low THC cannabis oil as a treatment for children suffering from severe, uncontrolled epilepsy. Here again we felt this could be our daughter.
We are out of traditional treatment options for our daughter. At her last appointment with Sidney’s neurologist, we inquired about trying cannabis oil. Her doctor told us cannabis oil is illegal in Texas so he cannot prescribe it for her! How can this be, when children in other states are able to have access? As her parents, we feel Sidney should have the opportunity to try cannabis oil– and potentially get another chance for seizure freedom – here in our home state of Texas.
Compassionate Access for Epilepsy (CAFE) is a project of the Epilepsy Foundation Texas affiliates. CAFE Texas brings together Texans and nonprofit organizations that support the therapeutic use of cannabidiol (CBD), a non-psychoactive component of cannabis, to treat epilepsy.