Wearing purple for National Epilepsy Day on 26 March is something that’s close to Jodie Zahn’s heart.
When her son Cooper was three weeks old, Jodie was cuddling him when suddenly his body stiffened, his eyes rolled back, he held his breath, foamed at the mouth and began twitching.
“It was terrifying because I didn’t know what was going on,” the Bundaberg Regional Council employee said.
“I happened to be holding my phone and took a quick video so I could show a doctor what was happening.
“We rushed him to the emergency department where I showed the nursing staff the video of Cooper. They took us straight in and the doctors started diagnosing his condition.”
Quick thinking helps to diagnose Cooper
Jodie said within 20 minutes the video was sent to a neurology team in Brisbane.
“By looking at which way his eyes rolled, which side of his body jerked, and how long the seizure lasted, it helped with their diagnosis,” she said.
“What I didn’t realise in that split second was that video would end up being ‘gold’ and the doctors praised my quick thinking.”
After another two seizures at the Bundaberg Hospital, Cooper was flown to the Royal Children’s Hospital in Brisbane by the Royal Flying Doctor Service.
“Cooper spent eight days in hospital and while there, he had another five seizures,” Jodie said.
“He was later diagnosed with Epilepsy due to his tonic-clonic seizures also known as grand mal seizures.”
While Jodie stayed with Cooper at the hospital, her husband Colby, their two-year-old daughter Harper and her mother-in-law Nola, were accommodated at Ronald McDonald House.
“It was a very scary time and the fact that my husband could be with me in Brisbane was amazing,” Jodie said.
“When I found out Council staff were fundraising for Ronald McDonald House at our Free Dress Day in February, I was happy to know we were supporting this charity because of our experience.”
Cooper has had 10 seizures in total and it’s been a long journey for the family, but Jodie is happy to report he is now 17 months old and six months seizure free.
“He is still medicated but we’re hoping to trial weaning his medication in November with the hope that he may be lucky and grow out of it,” she said.
“Because he has had to take so much medication, he developed a severe oral aversion and wouldn’t take any food in his mouth.
“Even puree would make him vomit, but eight months with a speech therapist teaching him to feed has helped.
“He won’t take a bottle so I’m extremely grateful for Council’s policy on breastfeeding which allows me to leave for an hour a day to breastfeed.”
Jodie offers some practical advice when watching someone have a seizure.
“This can be confronting but please stay with them, make sure they are safe, time how long it lasts, don’t restrict their movements and call an ambulance.”
Hi my name is Debbie Murray, I’m an epileptic. I had grand Mal seizures. I was 12 months old when they started, every week, I was in and out of hospital, to a kid it was fun and I never knew what was going on. I was in and out but the older I got I was having operation on my eyes and doctors keeping an eye on my epilepsy, makin shore I never had anymore seizures. Having seizures up until I was 8 years old when I had my last one. That was my grand Mal seizures. I was 24 I had one when I had my appendix out but that was the hospital’s foult they never gave me my tablets before I had the operation. Now I’m 55 in June. The doctors told my mum and dad. I was never to be left alone and I couldn’t have children but I have four children my son is 24 my twins daughter’s are almost 18 and I have an almost 17 yr old daughter. And they are healthy 🙂 I did what doctors said not to do and I’m happy I did.
Debbie, thanks for sharing your journey with us. My name is Katrina and I am Cooper’s Aunty. We all hope that one day he may just ‘grow out’ of his epilepsy – so we live in hope, but if that day doesn’t come, Cooper has a village of people around him to love, support, protect and look out for him.
I personally believe it is important to hear about other people’s experiences as it helps us learn and support our loved ones going through the tough times. Glad to hear your children are all healthy as well. That’s all we ever want for them. I hope you remain seizure-free and thanks again for sharing 🙂
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