Jack’s RCH journey

Eight years ago, Tracey had no idea that her son Jack would be the healthy young man he is today.

A few months before his third birthday, she noticed that he was falling over more than his brothers ever had and she was sure that it wasn’t clumsiness. After a particularly bad tumble, Tracey took Jack to their local hospital. They treated his bumps and bruises, but couldn’t pinpoint what was wrong. A trip to the GP confirmed that Jack’s condition was troubling, but no diagnosis was made. Increasingly concerned, Tracey brought her son to the RCH Emergency Department.

“It was like a breath of fresh air. Even though they couldn’t yet see what was going on with Jack, the doctors and nurses took everything I said on board.”

So began Jack’s RCH journey. Testing to determine Jack’s diagnosis — severe Rolandic epilepsy — took time because of the type of seizures he was experiencing. Focussed around the central part of the brain, Jack’s seizures also came in clusters. Therefore, Jack could go weeks without one, only to have a group or cluster of seizures occur within a short time. Predicting when the clusters would occur was impossible, so detecting this abnormal electrical activity in Jack’s brain was no small feat.

Eventually the seizure activity was recorded via an electroencephalogram (EEG) and treatment could begin in earnest. At first Jack’s neurologist, A/Prof Richard Leventer, administered epilepsy medication to control the seizures, but they didn’t have the desired effect. Next, Jack was put onto special diets proven to control epilepsy symptoms, but they didn’t stop the seizures either.

“At his worst, Jack couldn’t walk, sit or feed himself unassisted. We tried lots of medications and combinations of medication, plus different diets. Some things seemed to work for a while, nothing was a clear winner.”

The silver lining for Tracey was knowing that Jack would grow out his epilepsy by his teens. However, it didn’t make the experience any less heartbreaking. Jack’s condition was going to get worse before it got better and his development was being affected. This once “talkative and switched on” little boy began to regress, eventually losing the ability to write his own name. After each seizure cluster, Jack had to re-learn many of his everyday tasks.

Thanks to the help of a classroom aides, Jack continued to attend school. Thanks to his sheer determination, he also continued to join in on school activities. Tracey remembers Jack taking part on a school race, despite having such difficulty walking.

“The whole school got behind him and cheered him on. Jack came last in the race, but he was so proud of himself for crossing the finish line.”

Though it’s been a long and difficult road, Jack got some great news in September 2015: doctors declared him epilepsy-free. An EEG confirmed that the electrical activity in his brain has returned to normal and he’s since been weaned off his epilepsy medication. Says Tracey: “This is way sooner than we thought, but we’re thrilled!”

Despite this good news, saying goodbye to the RCH Neurology team has been bittersweet for Jack and his family.

“It’s been hard for us to leave the RCH. It was our second home for seven years and our doctor Richard, like many RCH staff, became a part of our family. We can’t speak highly enough of them and what they did for us.”

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