Gracie had her first seizure at 6 months of age. Previously she was completely healthy with no sign of illness whatsoever. She seized for about 20 minutes and was taken by ambulance to the children’s hospital nearby where they told us it was just a febrile seizure and sent us home. No more than 10 min after we left the hospital, she seized again and we returned to be admitted overnight. Tests were run, including an EEG, and the doctor told us they could find nothing out of the ordinary and Gracie was diagnosed with febrile seizures. We were told she could have a few more episodes before turning 5 but would likely grow out of it.
She proceeded to have at least one tonic clonic seizure for the next four months until a neurologist called us wanting to run more tests on Gracie, including a genetic test. She was diagnosed with Dravet syndrome at 10 months of age. The medication available to a child that age was slim. Her behavior turned from a happy laughing baby to a screaming crying miserable one. Her sleep pattern was severely disrupted and long nights consumed us for months. Gracie began to sleep with us out of fear of SUDEP. She started having myoclonic seizures shortly after turning one. Around the age of two her atomic head drops began which lead to a roller coaster of added anxiety as she could eat, drink, walk or play without getting hurt. Her quality of life declined until I told her neurologist something needed to change as we had exhausted all medication options for her age.
We were admitted for an EEG and discovered she was having hundreds of atonic seizures on a daily basis. The neurologist recommended a corpus callosotomy to help relieve her head drops and give her quality of life back. We agreed without hesitation. Gracie had a complete corpus callosotomy shortly before turning two. We are thankful for the surgery as it has provided her much relief and added quality of life back into her spirit.
She continues to suffer from myoclonic seizures and we are awaiting a VNS implant next month to help alleviate those seizures. In addition to this Gracie is delayed about 6-12 months. However, she has made great strides with the help of speech, physical, and occupational therapies on a weekly basis.
Gracie is a fighter every single day. She loves stickers, bubbles, and her Daddy. We pray for a cure for our little girl and all those suffering from this terrible disease.
