A Rare Neurological Disorder
At 5 weeks old, Claire started having seizures. After a visit with a local neurologist that included many diagnostic tests, it was determined 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 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. She and her family were referred to see neurosurgeon, David Moss, MD, at Phoenix Children's. Coming from Tucson, a 2-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 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 done between seizures. Both tests determined every one of Claire's seizures were coming from the exact same spot in the brain. All the doctors agreed surgery was the best thing to help her develop normally and move forward.
The day came when neurosurgery was performed and Claire recovered at a normal rate of healing. Although there was concern 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, 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's 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. 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 is obsessed with anything Barbie, princesses or Little Einstein. 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.
“We love our Claire Bear!" Summer said. "And are so thankful for the team at Phoenix Children’s for her continued health."
