by Georgina Schilg, Sophie’s Mum, (November 2016)

Our Sophie is eight years old and began having seizures at nine months of age. These were our first indication that something was wrong and so began our journey into the world of Tuberous Sclerosis Complex and Epilepsy. Since then Sophie has been on several different medications to control her seizures, had multiple EEGs, done several video EEG stays and has had neurosurgery to remove several tubers. We live in northern Tasmania, where there are no resident paediatric neurologists. For the past three years we have gained the services of a paediatric neurologist based in Hobart who travels to Launceston every so often, and prior to this we relied on neurology clinics at Royal Children’s Hospital Melbourne. Thus we have made many trips to Melbourne for various appointments, reviews, tests and surgery.

Sophie is aware of her seizures and has an aura before the onset of her  regular seizure type.

Sophie suffers complex partial seizures. Medications control her seizures quite well at present, and she is lucky in that she does not suffer too much from the potential side effects of these, although it is something that we continue to observe for. In particular we continue to have regular ophthalmology reviews and yearly electro-retinography to monitor any decrease in her visual fields as a result of one of the medications she takes, called Sabril (vigabatrin). Epilepsy is something we live with every day. We are very thankful that Sophie is happy to take her two medicines twice each day. We talk to her younger brother about Sophie’s seizures, about seizure safety and how he can help her if need be. Sophie is aware of her seizures and has an aura before the onset of her regular seizure type. Sometimes when tucking her into bed, she will ask if she will have a seizure that night, and comment that she does not like seizures. These questions are hard to answer – there is no knowing when the next seizure will be, or how long it will go for, and yet she remains brave and simply gets on with life. Sophie’s epilepsy means that I am extra cautious about leaving her places, as I need to ensure the other responsible adults are aware of the potential for a seizure, and to ensure that they are confident in managing this. It also means I am particularly cautious with activities such as swimming. However, Sophie’s epilepsy and TSC does not stop her from trying most things. She loves riding her bike and scooter, enjoys dancing and running and will give anything a go.

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