Claire's Story - How Neurosurgery Stopped her Seizures
A Rough Start for Baby Claire
At 5 weeks old, it appeared the Driggs family had a perfectly normal newborn. But then Claire started having seizures. After a visit with a local neurologist that included many diagnostic tests, it was determined that the seizures were stemming from a brain tumor caused by a genetic disease called Tuberous Sclerosis.
Tuberous Sclerosis (TS), a rare neurological disorder, is a life-long condition that can cause tumors to grow inside the brain, spinal cord, organs, skin, and/or and skeletal bones. Although the tumors resulting from tuberous sclerosis are typically non-cancerous, the condition may still cause serious problems. Tumors that grow in the brain can block the flow of cerebral spinal fluid in the ventricles of the brain. This can lead to behavior changes, developmental delays, seizures, nausea and headaches, to name a few.
Her doctors tried anti-seizure medication, but Claire's condition continued to worsen. Claire and her family were referred to see neurosurgeon Dr. David Moss at Phoenix Children's Hospital. Coming from Tucson, a two-hour trip would provide the best care for Claire.
Brain Surgery Stopped the Seizures
As soon as they arrived at Phoenix Children's, Claire was evaluated and ordered to have a 2-day EEG test to pinpoint exactly where the seizures were coming from. Epilepsy expert specialists Dr. Buchhalter and Dr. Jarrar from the Barrow Neurological Institute at Phoenix Children's Hospital were brought in to collaborate as well.
In addition to an EEG, they performed a new test called an Inter-ictal SPECT, which is a radiology procedure that is done in between seizures. Both tests determined that every one of Claire's seizures were coming from the exact same spot in the brain. All the doctors agreed that surgery was the best thing to help her developing normally and moving forward.
The day came when neurosurgery was performed and Claire recovered at a normal rate of healing. Although there was concern that she could have paralysis on the right side of her body, she ended up being fine and was soon released to go home.
“Looking back, the staff at Phoenix Children's were awesome. The nurses were fantastic and I felt that every doctor was very upfront with us. They let us know about things to expect post-surgery (such as nausea, swelling, etc.) and answered all of our questions,” said Summer Driggs, Claire's mom. "Although it was hard to be away from home and my other children, this was the best place for us to be for Claire's care."
How Claire is doing now
Claire has remained seizure-free for 1-1/2 years. However, due to her life-long disease, new tumors can form at any time in her life. Since her original surgery in 2009, a new tumor formed in her brain, but it is has been kept under control with medication. Claire goes in annually for check-ups for other areas of her body where tumors could form and so far, everything looks good.
Claire is 3 1/2 years old and is energetic, loves gymnastics, enjoys playing with her older siblings and loves anything that has to do with Barbie, princesses or Little Einstein. Claire also interacts well with other children, has such a fun personality and enjoys learning new things.
Although slightly delayed in a few areas, Claire is coming along really well overall. She also plans to start preschool in the fall of 2012.