The time prior to diagnosis is one of the most frightening and difficult for most parents. They see their child in often life-threatening situations and they are faced with so much uncertainty.
Lynn turned to the Epilepsy Queensland Helpline and was able to speak to one of our epilepsy nurses.
We were able to provide information to Lynn about epilepsy, basic seizure first aid and how to prepare and advocate for Ivy. The most important thing we are able to do was to listen and provide support. Lynn and Scott did training in understanding epilepsy and administration of emergency medication. Our services team also were able to help with Ivy’s management plan and advice for her school.
Ivy started on medication, which managed the tonic clonic seizures, but she started to have frequent absence seizures, up to 50 a day. Lynn was able to get Ivy an appointment for an EEG.
Within five minutes, they had registered eight seizures. They stopped the EEG and Ivy’s pediatric neurologist saw Lynn immediately.
His words still bring a tear to Lynn’s eyes today: “I need you to understand how serious this is. It’s one of the worse cases I’ve seen.”
He changed Ivy’s medication and she slowly started to improve. In that first month, Ivy was unable to go to school, ride her bike and participate in sports. Her beloved jujitsu was definitely off the cards. To help her recovery, she had to have an extra sleep every afternoon, much to her disgust. For an active and social child like Ivy, the isolation and restrictions were devastating.
Despite some improvements in her seizures, Ivy’s family had to remain vigilant. During one of Ivy’s absence seizures, she had to be rescued by her father, Scott. They were out for a walk and Ivy nearly walked into a power pole and out onto the road where a truck was heading straight for her.
Ivy was pleased to let me know that she has now been 14 months seizure free and her family’s focus is on helping to raise awareness of epilepsy.
They decided to take on Epilepsy Queensland’s September Sizzle and raise awareness and funds for seizure first aid.
Ivy said “One in 10 Australians will have a seizure in their lifetime. Most people don’t know what to do if someone has a seizure, but if they do, they can know how to help. It’s one of the most common things, so we have to try to raise awareness.”
For September Sizzle Lynn who is a personal trainer, held a special fundraising training session with the help of Hockeyroo and Olympic gold medalist Angela Skirving.
Ivy’s message is: “Don’t be ashamed of epilepsy. Lots of people have it, so it’s normal. I have epilepsy, but I’m still me. I’m still Ivy.”
With your help we can continue to offer support and information to parents through their entire journey with epilepsy. Having a child with epilepsy is frightening for parents when their kids have just been diagnosed. No-one should be alone and unsure when they have a chronically ill child. It is estimated that one in every 200 Australian children are living with the daily challenges of epilepsy.
CEO, Epilepsy Queensland
P.S. As the new year fast approaches we will have a new group of children that are starting school, or moving up to high school like Ivy. Your donation before 31st December will mean that our Epilepsy Helpline remains an important support for parents, and that workshops and outreach can be brought to more schools in metropolitan and regional Queensland.