A YEAR ago, Ellie McGowan was suffering up to four seizures a day caused by epilepsy, which first emerged when she was just 12 months old.
Now, thanks to specialist brain surgery, the eight-year-old has effectively been cured of the debilitating fits which blighted her life.
Ellie and her family will this week meet the Princess Royal at the opening of a new centre which aims to help other children like her with the hope of finding new treatments for epilepsy, as well as investigating the causes of the condition.
The £1 million Muir Maxwell Epilepsy Centre, based at the University of Edinburgh, has been launched with the support of the Muir Maxwell Trust with the hope of improving the lives of children with epilepsy.
Ellie’s mother, Charisse, said the day she and husband Scott found their 13-month-old daughter having a massive seizure in her cot was a “horrific ordeal”.
It took 45 minutes for medical staff at the Sick Kids Hospital in Edinburgh to bring the fit under control. Ellie, from Leith, went on to suffer further fits which were eventually diagnosed as generalised epilepsy with febrile seizures plus (Gefs+).
These seizures caused scarring on her brain which led to her suffering mesial temporal sclerosis, which in turn caused more fits, meaning she had to start medication. But Mrs McGowan said even the strong drugs could not stop her suffering seizures.
“She was still having absences and seizures that were lasting two or three minutes each time. They could vary from three or four a week to three or four a day,” she said.
“She would shake, lose focus and mumble. She would tap and hit herself or whoever was holding her. We would just keep her safe. You would just have to wait for that to pass.”
As her fits became increasingly uncontrolled, the family were asked to consider the prospect of surgery to remove the scarred tissue from Ellie’s brain. After deciding to go through with the operation, Ellie had to undergo extensive testing to pinpoint the areas of her brain causing the epilepsy and to measure factors such as her learning, speech and language abilities to see if these were affected after surgery.
The problem was pinpointed to the scarring on her temporal lobe, caused by the Gefs+ seizures, and surgeons thought if they removed the scar, there was a 75 per cent chance of stopping the seizures completely.
Mrs McGowna said: “The surgeon was very good and when talking about the risk of mortality, he said with the uncontrolled seizures she was more at risk of death from those than she was from the surgery. So that pretty much sealed the deal for us.”
Last year, Ellie became one of the first children to undergo the surgery in Scotland.
Just six others have so far undergone the operation at the Sick Kids Hospital in Edinburgh. Previously, patients were sent to Great Ormond Street Hospital in London.
Mrs McGowan said: “It is just incredible. To look at her now you wouldn’t think she’d had major brain surgery.”
Researchers looking for lifestyle key
SCOTTISH researchers are to investigate whether epilepsy could be caused or prevented in young children by lifestyle changes during pregnancy.
The Muir Maxwell Epilepsy Centre in Edinburgh will look at whether women could take supplements or make changes to their diet which would protect their unborn child’s brain from developing epilepsy.
The centre, officially opening tomorrow, will also look at ways of diagnosing epilepsy earlier, as well as searching for treatments for the condition.
About 70,000 children in the UK are diagnosed with epilepsy.
Dr Richard Chin, consultant paediatric neurologist and director of the centre, said: “We will be looking to see if we can try to prevent epilepsy by identifying pre-natal causes and see if we can minimise exposures or risks altogether.”