818 Burke Road Camberwell VIC 3124 phone (03) 9805 9111 fax (03) 9882 7159 web www.epinet.org.au abn 75 967 571 784
19 March 2013
Epilepsy Awareness Month – March 2013
Purple Day – International Day for Epilepsy – 26 March 2013
Chris Buttner, 10 years old, was at a school basketball excursion in August 2010 when he was kneed in the back of the head during a game. After returning home Chris was acting unusually dazed and confused; it was 11 days after the accident that Chris had his first tonic clonic seizure, which caused him to shake violently.
Rebecca tells h ow shocked she was when this happened. “Nothing like this had ever happened before and I had no idea what was going on.”
Chris was then admitted to hospital and underwent some brain scans, which showed unusual activity in an area of his brain.
“He was in and out of doctors, having blood tests every six to eight weeks, trying out different medications to see which ones would control it. They never said it was the injury that caused the epilepsy though. But finally he was diagnosed with epilepsy and it was a bit of a relief that we finally had an answer as to what was going on.”
It has been a lot of trial and error to find the right medication for Chris’s seizures.
“The first medication we put him on made him drowsy,” says Rebecca. “The one after that made him aggressive, so we had to change the dosage. It’s been nearly two years now but it’s still all very new. Now he’s been on his new tablets and seems to be feeling better, and is quite settled, so hopefully we have found the right one.”
“Chris has been lucky in that he hasn’t had many seizures. After the first tonic clonic one, he has had some absence seizures, where he seems to just blank out for a minute or two.”
Unfortunately, Chris has had to put up with some stigmatisation from having epilepsy. “There was one incident where he was staying at a friend’s house with about 10 friends, and the cousin of the friend he was staying with was teasing Chris,” Rebecca says.
“But once his friend’s mother was told, that seemed to put an end to it. Sometimes he is also called names at football, not by his teammates, but by members of the opposite team. Chris seems to know, however, that it’s just to psych him out for the game, and while it does bother him a bit, he bounces back very quickly. His team mates are quick to stick up for him when this happens.”
Chris has worked hard not to let epilepsy affect his school and his life. He sees himself as a normal boy, and loves to play football and is also a brown belt in Karate.
“We have had a lot of support from the Epilepsy Foundation and from his school. His grade 4 and 5 teachers along with other staff at the school have been amazing as have his football club and karate sensei.
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818 Burke Road Camberwell VIC 3124 phone (03) 9805 9111 fax (03) 9882 7159 web www.epinet.org.au abn 75 967 571 784
“The school organised for a qualified person from the Epilepsy Foundation to come out and train the teachers and do a presentation in the staff room about what epilepsy was and how to deal with it,” says Rebecca. “Not long after he was diagnosed Chris created a PowerPoint slide with information on epilepsy, and pictures of his brain scans and EEG results, and gave a presentation about it to his class.
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“I was so proud of the way Chris got up and did this. He wanted his friends to know what it was about, so they weren’t scared. He wanted to demystify epilepsy. It really helped because the class got to ask him questions, and it just brought it out into the open, allowing him to take ownership of the condition,” Rebecca says.
The Epilepsy Foundation has provided support to Chris and his family, through programs like
Epilepsy Smart Schools, which increases understanding of epilepsy across the whole school.
This program is designed to enhance social inclusion in the school, to educate, inform and support teachers, school communities, parents and, importantly, students with epilepsy, to be confident about their epilepsy and achieve better educational outcomes. The Epilepsy Smart
Schools website and free resources can be accessed at www.epilepsysmartschools.org.au.
Rebecca says, “Unfortunately throughout last year, Chris had to be taken out of a certain incursion at school as he was suffering with seizure symptoms, where his jaw would lock and he would foam at the mouth, and not be able to speak. He was very upset by this.
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“Then, in October last year, Chris started suffering from major headaches and prolonged episodes of what we think are absence seizures, and is now an outpatient at Melbourne's Royal
Children's Hospital, where in the next few weeks he will undergo more tests, which will include a
Sleep Deprived EEG, MRI and another medication change.
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For Rebecca and Chris, the Epilepsy Foundation provides vital services that need ongoing support and Rebecca urges people to support Pur ple Day 2013, through the “ 26 Days 26
Ways ” campaign.
People with epilepsy or their families can call the Epilepsy Foundation of Victoria for assistance on 9805 9111 or the Epilepsy Helpline 1300 852 853 for the cost of a local call, or visit www.epinet.org.au
and support the “ 26 Days 26 Ways ” campaign.
Ends