Debilitating Seizures Lead to Diagnosis of Dravet syndrome

shelbys

“Shelby was six months old when she had her first grand mal seizure”

Shelby and her twin brother were born at 34 weeks. Despite weighing a mere five pounds at birth, Shelby was released from the hospital with her brother. The first sign of her health problems were seen after her six month checkup. Seven hours after the appointment where she received her six-month shots, Shelby had her first seizure. It lasted eight minutes. After a 22 minute break, she experienced her first grand mal seizure, a type of seizure that involves a loss of consciousness and violent muscle contractions. Shelby was rushed to the hospital where an EKG showed that she was having constant seizure activity in all areas of her brain. Shelby’s doctors placed her on anti-seizure medications to try and control their frequency, but at eight months old, she was taking eight different medications and still constantly having seizures.

At age two, Shelby was diagnosed with intractable epilepsy, a seizure disorder in which the seizures fail to come under control with treatment. These seizures are sometimes also called “uncontrolled” or “refractory.” When Shelby turned three, she had a vagus nerve stimulation (VNS) device implanted under the skin of her chest wall to generate regular pulses of electricity to her brain in order to prevent seizures. Unfortunately, even after the VNS surgery Shelby was experiencing four to five grand mal seizures a day. Her doctor continued to try various combinations of medications to treat Shelby.

She was finally diagnosed at age six with Dravet syndrome, a rare and catastrophic form of intractable epilepsy. It is a debilitating, life-long condition that can severely impede an individual’s quality of life. Frequent seizures, poor seizure control, developmental delays, and a higher risk of sudden unexplained death in epilepsy are all associated with Dravet syndrome. The frequency of Shelby’s seizures increases when she is sick or if they are triggered via over-stimulation, drastic temperature change (hot or cold), and exposure to direct sunlight. Shelby has been in physical, occupational, and speech therapies since she was six months old. She will need more surgery in the future to replace the battery in her VNS.

Shelby is an affectionate and friendly nine year old little girl. She loves horses, Curious George, going on car rides, arts and crafts, and playing in the pool.

Kids Wish Network is hard at work planning a once-in-a-lifetime experience for Shelby; make sure to stay up to date by checking back soon for all of the magical details of her marvelous wish!

 

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Kids Wish Network is a charitable organization dedicated to infusing hope, creating happy memories, and improving the quality of life for children having experienced life-altering situations. Kids Wish Network assists children and their families through several key programs.