When Linda Littlechild, then 38, was first diagnosed with Epilepsy it was not only a daunting time for her, but the whole Littlechild family. It was also the beginning of a difficult and sometimes frightening journey, but one which has ultimately led her full circle to a new life in which she uses her experiences to help others facing the same issues. This is the Littlechild family’s story of that journey.
It was 2003 when Linda first suffered unexplained ‘feints’, but they came with increasing frequency and Linda was soon admitted to hospital for tests. During that overnight stay Linda suffered her first clinically proven ‘seizure’ and the following day she and her husband Kevin were given what for them was the devastating news that Linda had epilepsy.
Knowing so little then about the condition, they initially found this news frightening and difficult to come to terms with. Telling the rest of the family was also, they recall, a daunting prospect, particularly as they were keen not to unduly alarm their young children.
Linda was prescribed medication to treat the epilepsy and soon returned home, but she continued to suffer further seizures. Her children, who had at first been very frightened by these episodes, began to learn with guidance from Kevin how to help their mother during and after a seizure, who to call for assistance and, most importantly, how to care for Linda until help arrived.
One of the major implications of her diagnosis was that Linda had to surrender her driving license. This meant a loss of independence, and her reliance on Kevin to take her anywhere slowly affected Linda’s confidence and overall mood. Though she continued to work and tried to live as normal as possible, many changes had to be made, affecting not only Linda, but her family & friends too.
Regular visits to see the hospital consultant resulted in adjustments to her medication, and hopes rose as these at last seemed to be controlling her epilepsy. As a year ‘seizure free’ approached, Linda looked forward to getting her driving license back and family and friends were delighted at Linda's progress. Then, out of the blue, Linda suffered a seizure. For Linda this was emotionally devastating, and her dream of getting her license back had gone. As she faced the fear of further seizures her fragile confidence took a very hard knock.
Her consultant suggested that medication alone may not work for Linda, and that a surgical approach may be an option. Kevin will never forget that day as Linda, quite out of character, promptly swore that “No (expletive) way” was she going to have her brain operated on! However, a suggestion of a referral to Southampton for a review Linda's case by a specialist was agreed.
On their first visit to the Wessex Neurological Centre the Littlechilds were introduced to Dr Kinton, who reviewed Linda's case and suggested further changes to medication, but Linda continued to have seizures. Following numerous tests and MRI scans, it was suggested that Linda could be a candidate for surgery, though further tests would be needed, including a 5-day stay in the Centre’s adult Video Telemetry (VT) Suite.
The VT Suite is equipped with a very sophisticated EEG system which, through a series of electrodes, records the electrical activity in the brain and simultaneously makes video and audio recordings of the patient. For Linda’s first stay in the VT Suite, the electrodes were attached to her scalp but, although Linda had seizures recorded, there was not enough detail to pinpoint the trigger area. It was decided that Linda should have another session in the VT Suite, but this time to have the electrodes attached directly onto the cortex of the brain, which would first involve undergoing major surgery.
Kevin and Linda remember this as being one of the hardest things to explain to their children, but assistance came from Rebecca & Sarah, the WNC’s highly trained specialist epilepsy nurses, who were on hand to provide much needed support to all the family.
A date was set and Linda attended for this operation to fit the electrodes followed by a stay in the VT Suite, where sufficient detail was recorded to provide Linda’s surgeon, Professor Gray, with precise details of the part of the brain causing the seizures. Further surgery followed within days, firstly to remove the electrodes but then to remove the right hippocampus, the area from which Linda’s seizures were being triggered.
The operation took most of the day and Kevin remembers an anxious wait before he was finally allowed to visit Linda in the high dependency unit and where, to his surprise, Linda was sitting up and gave him a wave as he approached her bed. The relief of both was obvious and though Linda was tired, the operation had gone exactly to plan. Within a few days Linda was transferred to a normal ward and then allowed to return home. Regular check-ups followed as a careful eye was kept on Linda’s progress.
Though Linda remained on her epilepsy medication, over time (and with the continued support of the specialist nurses) she gradually regained her strength and confidence. Before long she was able to return to work, albeit initially on reduced hours. Life was starting to take on an air of normality again, and a year after the operation Linda was able to get her driving license back – a real landmark for her. Linda had at this stage still been taking three of the first-line anti-epileptic drugs. A planned reduction of these soon saw her weaned off the first drug, and she had begun reducing the second when to her utter devastation, Linda had a seizure.
Fortunately, only a slight re-increase of the medication was needed and Linda is delighted now to be living a normal life, doing all the things she likes to do with her friends and family, driving and working. The family have also had the confidence to enjoy a long awaited holiday, without fear of Linda suffering seizures.
Now, ten years on from that original diagnosis, Linda has drawn on her experiences to help others facing a similar journey, and with her involvement in the Epilepsy Support Group run by the specialist nurses who helped her. She and her family have also become active supporters of Smile4Wessex, raising money for the various appeals run by the charity, including the project which provided a similar PV Suite to the one in which Linda was assessed, albeit especially designed to help children with epilepsy.
How does Linda feel to have her ‘new’ old life back? “Absolutely wonderful” she says, and Kevin’s smile and nod confirms that he concurs!