Luke's Tuberous Sclerosis Page
Taylor's Story |
Taylor's Story Hi, my name is Terry, my wife Shireen and I live in Sydney, with our three children Kyle our eldest son, who is 10, Taylor our only daughter, who is 4, and Jordan who is nearly 3. Jordan has epilepsy and is controlled on Tegretol, he has slow development, but does not have TS. He is as yet undiagnosed, and the doctors are searching the possibilities of a metabolic or cell structure disorder. Kyle is a great big brother, with many interests ranging from BMX to roller blades, reading and computers, baseball to piano and clarinet. Taylor, was diagnosed with TS at 8 months old, and was obviously having tiny seizures since birth. Over her first two and half years we have tried every drug available, on their own and as various combinations. At one stage we had three days without a seizure, but it didn't take long for the fits to break through again. The best we managed to achieve, was an average of about 6-7 seizures a day on a combination of Felbamate, Lamictal (lamotrigine) & Epilim(sodium valporate). Taylor was born with four tubers, two giant cell astrocytomas, and calcifications. Most of the electrical activity was traced to a tuber on a forward area on her left temporal lobe.(Through a series of SPEC scans, MRI's, and video telemetry.) We had a decision to make. The seizures were uncontrollable, Taylor, for all that was wrong in her head, was only slightly behind in development and remarkably bright and happy. We could leave things the way they were, search for greater drug control and hope the fits didn't take their toll and send her development backwards. They said they could operate and remove the offending tuber and another tuber toward the rear of her left temporal lobe. This was supposed to, at worst, leave her with no change, at best we could hope for no more seizures with little or no drug control although this was highly unlikely. The operation would take about three and half hours including EEG monitoring on the surface of the brain. This would determine the extent of the electrical activity. They explained how it would be done, how they determine what to take and what should be left. The window for success for this procedure gets smaller as the patient gets older. The risks were all the usual plus, loss of some field of vision, loss of speech if the right side of the brain had not already taken over...... It was up to us. On April 24th 1996, Taylor had a five and half hour operation. The surgeon came out and told us they took both tubers, (later to be proven astrocytomas) and all the tissue in between as that presented as abnormal...... The whole temporal lobe. It was the longest five and a half hours of our lives. Seeing her in recovery with her head bandaged and looking so sick was the worst. She was sent from there to the neurological high dependency ward, where she was to stay as long as she needed to . For two days Taylor although awake but very sedated did not speak to us and all our fears were looking to come true. However children are very resilient and on the third day in the evening she sat up and said she wanted an ice block. That was the best moment totally indescribable. Taylor was discharged 10 days later. The doctor's told us that the next two weeks would be a nightmare with Taylor's body settling down after the surgery and boy were they right. Many seizures and temper tantrums, uncontrollable screaming and no sleep. But we survived. After the surgery we noticed how bright and alert Taylor was, it was as if she had been in a deep fog before and now it was clear. We are now, 9 months down the track , and for most of that time the seizures were relatively controlled, but are now starting to increase again, although we are only on 2 medications. Taylor's social and cognitive skills are improving everyday, and she attends a regular pre-school 5 days a week. Her speech is improving more and more everyday. We have no regrets about the surgery for Taylor. The risks of not doing the surgery in the end out weighed the risks of the surgery itself. It was a very difficult time not only for myself and Shireen but for the whole extended family. To see Taylor so happy and carefree is worth all the anguish we went through as parents. ---------------------------------------------------------------------- Terry, Shireen, Kyle, Taylor & Jordan. Sydney, Australia. This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.
Deanna Runyan-Wall E-mail address: deannadawn@lukets.org Last updated: April 5, 2008 Created: December 5, 1996 |
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