Undiagnosed Seizures



Hi. My name is Ansley Grace and I am two years old. At birth, I was a normal, seemingly healthy, positively beautiful bundle of joy! In fact, during my first check-up at the pediatrician’s office, the doctor said I was absolutely perfect and exactly the way they order each and every baby. Just a few weeks later, when I was 3 ½ weeks old, I had my first seizure in the middle of the night. My parents rushed me to Children’s Healthcare of Atlanta-Scottish Rite. The doctors there gave me a dose of Phenobarbital, which stopped the seizures that I was having. They did an MRI and an EEG…both were normal. They sent me home on a low dose of Keppra. After about two weeks of being seizure free, we all thought my little issue was going to be nothing more than a tiny bump in my life’s road. The next few months of hospitalization after hospitalization made us realize that the tiny bump was more of a mountain. I kept having seizures despite tweaks in my medications and dosages. When I was 4 ½ months old, we spent 9 weeks at a children’s hospital in Tennessee, seeing one of the best pediatric neurologists in the US. As we prepared to leave for home after that long stay, the doctor told my parents that I only had weeks or months to live. My parents didn’t believe that for one second, though, because I have so much fight in me. My parents took me to see another one of the country’s best pediatric neurologists in Boston, MA. Unfortunately, he didn’t have any answers either. We’ve completed every genetic study, including the full exome of all my genes, and have not been able to find the cause of my seizures. In addition to talking to countless pediatric neurologists and epileptologists, my parents have also talked to two geneticists in Atlanta, one in Houston, and even one in Australia. I guess I’m just a mystery. Lucky for me, my parents don’t just sit behind closed doors, which is why I’m writing this story from Colorado. In July of 2014, my mommy, daddy, beautiful 4 year old sister, and I moved to Colorado Springs, CO. With this move, we’ve gained access to a medicine that we heard was helping kids like me who have also exhausted all the currently available FDA approved drugs for seizures. My daddy had to go back to Georgia for work, but he comes to visit every few weeks. My two grandmothers, Nanna and Mimi, have blessed us with their help by taking turns staying with us too. I am using CBD oil and it has really made a difference in my life. My parents say that I have been so much more alert after starting my new medicine. I’m able to move my arms and legs more and I’ve shown more head control than I ever have before. This is a huge improvement compared to my experience with FDA approved anticonvulsant medications. Not only did those medications completely fail to control my seizures, they also zapped all of my personality and practically put me into a coma at times. I don’t understand why I’m unable to use my new medicine in Georgia. My parents tell me there is a stigma attached to the plant my medicine comes from. I’m sure if the naysayers spent a day with me, they would change their minds. My family prays that Georgia will pass HB1 so we can come home where we belong!

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