Isabella just after starting the diet
Isabella was born on the 12th November 1994.
She lives in Victoria with her sister Jessica (9yrs).
Isabella started the ketogenic diet in November 2000. She has been seizure free since Day 4 in hospital. She is managed by the dieticians at the Royal Children's Hospital in Melbourne.
|Isabella is seizure free & drug free.|
|Isabella's story as told by Gabrielle (her mum).|
"Our daughter, Isabella, turned 6 in November last year, eight days before commencing the Ketogenic Diet at the Royal Children's Hospital in Melbourne. She has been seizure free since Day 4 in hospital!
Isabella had been having anything in the range of 10-40+ myoclonic, drop attack and absence seizures per day. From the onset at 3 1/2 years of age, the prognosis was pretty bad. I remember her neurologist explaining that myoclonic-astatic epilepsy is particularly nasty because it's difficult to treat and is usually associated with developmental delay. For 2 1/2 years the weight from our shoulders never lifted as we watched Isabella's development and whole person slowly deteriorate."
"Isabella has used three drugs, initially Tegretol, currently Epilim and Lamictal in various combinations with no seizure control whatsoever only a myriad of subtle and not so subtle side effects. Nobody told us that after two or more drugs had failed to control seizures, the chances of having success with others were as slim as 10%. So for 2 1/2 years we were blindly optimistic that with every change in medications there would be some hope that Isabella's condition would improve."
"Two weeks before starting the diet, Isabella's EEG showed chaotic brain activity which her neurologist described as "shocking". She queried Isabella's need for a helmet, suggested we start rethinking her schooling and talked about introducing a third drug, Topamax. The outlook was looking as grim as ever and, it seemed, to textbook exactly as her neurologist had prognosed 2 1/2 years earlier."
"Slowly but surely Isabella's condition has been breaking our hearts because we knew that behind all these seizures was a beautiful and very normal six year old."
"Family and friends had forgotten what the old Isabella was like... Now seizure-free and with Epilim almost eliminated, people find the change in Isabella quite striking she's so switched on, alert, socially aware, agile, and constantly looking for new challenges to make up for lost time. She's feeling brilliant and it shows in so many ways. She's very proud of herself and understands that it is she, herself, who is "getting rid of the jerks". Her eyes are wide open, not half closed."
"I'm very pleased to say that Isabella's neurologist was most impressed with the different person she saw before her when we visited her just before Christmas."
"Some people envisage that the diet would disable a family's lifestyle (in fact this was one of the reasons many people gave for not trying the diet). Well, not ours! For the first time in 2 1/2 years, Isabella is able to join us at the dinner table (she'd always sit at the "little table" so she wouldn't slam her head). And this is only one example of how the diet has "enabled" us to be a family again. Many, many people said that the diet "is very hard". But nothing's harder than watching your child trapped and lost in a state of uncontrolled epilepsy."
"The diet does seem daunting at first, that's for sure. But in no time at all it really does become routine. I enjoy planning and making Isabella's meals because nothing feels as good as having such a positive effect on her wellbeing and, for the first time, having control over her epilepsy."
"It is still amazing to us that this diet can have such a profound effect on seizure control when the drugs had failed so badly. We understand that if a patient responds well to the diet initially, then it is likely that the diet will continue to succeed. This too is amazing to us, given the brief honeymoon periods Isabella has experienced with drugs."
"No-one talked about the Ketogenic Diet in a positive light until we came in contact with Epilink (a service provided by the Epilepsy Foundation of Victoria) through which we learned of other parents in Australia who'd had success with the diet. We were put directly in touch with these parents and also, via the internet, a huge network of parents around the world currently working with the diet. These parents have helped us through any day-to-day issues that have arisen. We've also worked very closely with two supportive dieticians at the Royal Children's Hospital in Melbourne. Craig and I know that without the support and encouragement from parents who've worked with the diet, and the opportunity to initiate the diet at the Royal Children's Hospital, we would not be in the position we're in today."
"If only we'd known more about the powerful antiepileptic effect this diet can have for some children and been given it as an option earlier, then perhaps we could have prevented Isabella's development delay, not to mention all the heartache along the way. Needless to say, our only regret is that we didn't try the diet sooner."
"For now we are taking things one day at a time and appreciate that it's still early days. We are extremely grateful for and making the most of each seizure-free day."
|Gabrielle Very proud Mum to Isabella, 6 yrs old - Myoclonic-Astatic Epilepsy - Ketokid since 20 November 2000 (Epilim, Lamictal) and Jessica, 9 yrs old.|
|Click here to return to the top of this page.|