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Information for the community – Updated 20 June 2022
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Epilepsy Awareness Month – Meet Abigail

Abigail story
WCH News
Posted 7 Mar. 2022

Epilepsy is a relatively common disorder which takes the form of recurring seizures. A seizure occurs when there is a sudden, uncontrolled, surge in the normal electrical activity in all or part of the brain.

Epilepsy can affect anyone at any age but most people with epilepsy will experience their first seizure before the age of twenty. Around 1 in every 200 children in Australia have epilepsy*. While we still have a way to go, there are many services and treatment available that can help children with epilepsy to lead rewarding lives.

To acknowledge #EpilepsyAwarenessMonth we introduce you to 13 year old Abigail who lives with epilepsy. Her Mum Sarah shared her story with us to help raise awareness of epilepsy and the impact it has on the lives of families:

“Abbey has Lennox-Gastaut Syndrome (a complex, rare, and severe childhood-onset epilepsy). She had her first seizure when she was 2 years old. Her first seizure was in Bunnings and the staff were excellent - a lady told us she thought she was having a seizure as her husband experienced them.

This began our epilepsy journey and many stays in the WCH over the years.

By the time she was 4 she was diagnosed with epilepsy and started on her first medications. She has experienced thousands of seizures over the past 11 years.

She has an intellectual disability and doesn’t talk like we do with words, she uses key word sign, gesture and her iPad to communicate.

Epilepsy impacts her, and our life more than any of her other disabilities. Seizures can change the course of the day in an instant. She needs time to recover and can make her and her brother late for school and miss out on social occasions.

It’s also challenging to get support workers to help out because they need to be confident to manage her seizures and carry out the seizure management plan. We have to build trust over a long period of time to enable them and us to feel confident that she will be cared for, and they feel confident to manage any eventuality.

It is also very hard for one parent to work as we often get calls that Abbey has seizures, or delayed starts to the day, so our family is on one income in order to best support the children’s needs as they arise. This can have other challenges on family life.

Our experience at the Women’s and Children’s Hospital (WCH) under neurologist Dr Clair Pridmore and Neurology Nurse Mark Francis has been second to none. Over the years they have explored every avenue to.ensure we leave no stone unturned to help reduce Abbey’s seizures.

Once we had exhausted most of the medications to try and control the epilepsy they recommended for us to trial the ketogenic diet**, one of only a couple of children supported each year to carry out this rigorous protocol in the hopes of achieving seizure freedom. This was not successful and despite Abbey reaching ketosis, she did not get relief from seizures, but did lose an awful lot of weight.

After we tried this, a vagal nerve stimulator was recommended to us. Abbey underwent surgery to implant the device to control the epilepsy, again amongst only a handful of children in Australia at that time who had undergone similar surgery. Abbey still experiences the same number of seizures but they appear to be shorter and her recovery a little shorter.

We will forever be grateful for the amazing medical care we have received from the WCH.

Despite all of her seizures and challenges Abbey is a most loving, happy girl. She will cuddle any one she meets and loves everyone without judgement, I think we could all learn a lot from her!”

Thank you to Sarah and her family for sharing Abbey’ story.

What Is Epilepsy – by WCH Neurology Nurse Mark Francis

For more information visit:

*epilepsycentre.org.au

** The term “ketogenic diet” is thrown around a lot as a great way to lose weight. This form of the diet should not be confused with the ketogenic diet used to treat seizures. Commencing the Ketogenic diet for epilepsy involves a multidisciplinary team of Drs, dieticians and specialist nurses who will carefully design the diet to meet each individuals nutritional needs.

Those commencing the ketogenic diet for epilepsy require to have higher ketones than those using it to lose weight, increasing the risk of certain side effects such a ketoacidosis which can be life threatening. They also require regular blood tests to monitor nutritional status along with things like renal function and calcium absorption. The diet also requires strict dietary calculation and weighing of all foods which can be a significant burden to families.

The diet takes commitment and strict monitoring by everyone in the family including extended family, friends and childcare / school.