Hi…….I’m Leah and this story is about how we fought my epilepsy and how the ketogenic diet has changed my life.
A Hard Time
- I was 3 years old and had epilepsy and febrile convulsions which were not fun. I have been to numerous neurologists.
Now at School
- I was growing older and I was going to school, that’s when it got harder because I was having 100 seizures a day. I would have to have the teacher hold my hand near roads and it would interrupt my work. My friends didn’t understand, and they still didn’t understand when I explained to them. Some kids teased me, and I would get really upset. There were some times when I thought I’m sick of this….why can’t I be like a normal kid!
A Hard Decision
- My Mum had heard about a diet that helps control epilepsy, on a programme called Good Medicine. She did research on it, and asked me if I would go on it. I wasn’t quite sure but then I said yes. I was ready to face a challenge!
A Trip to Melbourne
- To start the diet we had to go to Melbourne to meet the dietician and the doctor. That was fun, I really liked the dietician.
Going To Hospital
- The whole family went to Melbourne a second time to start the diet. When we got there I was admitted to hospital and I met Liz the nurse co–ordinator and the doctor. I vomited in the shower once. My sister, Rachel, didn’t want to leave me and she cried every time she had to go.
- I was really excited to go home. I was on the diet now, and having some yummy meals. I was having less seizures. The dietician was helping Mum and also the ketogenic mailing list. It’s good when me and the other kids on the diet can write letters to each other.
- Well I was having 100 seizures a day and now I’m having none. I’m off all my medication. I feel great. Mum has worked really hard seeing she has her own problems.
- One day I will be totally free and won’t need to be on the diet anymore. I’m 11 but I think the diet has changed my life knowing that I’m not the only one on the diet and not the only one that has suffered.
A Message from Leah’s Family
Our daughter Leah is 11 years old. She decided to write down “her story” over 1 year ago so that she could share with others the miracle of good health that the ketogenic diet has brought her.
Leah was diagnosed with epilepsy (specifically absence seizures) when she was 3 years of age. Before this she had numerous episodes of febrile convulsions which required hospitalisation.
Leah was treated with a myriad of medications and combinations of the same. However her seizures were not controlled and continued to escalate in number.
In late 1999 we first heard of the Ketogenic Diet which has been used to treat children with difficult to control epilepsy for many years … dating back to the early 1920’s. It is only in recent years however that once again it is becoming an accepted therapy. It should always be used under the supervision of a qualified medical practitioner.
The diet is a high fat, adequate protein and low carbohydrate diet which many may claim unpalatable, but with time and imagination it can be made acceptable. The diet does seem daunting at first but it gradually becomes a routine which becomes a part of normal family life. It gives me pleasure to plan and prepare Leah’s meals as I see the positive affect on her well being.
Our daughter began the diet in February 2000 and within 4 months she was seizure free. Over the next year we weaned her from all medication. It has been truly a miracle to see her emerge from the medications! She has a bright and bubbly personality and enjoys life, including school work!
Leah continues under the care of her Adelaide neurologist and we are in contact with the dieticians at the Royal Children’s Hospital in Melbourne, where we initiated the diet.
Another invaluable source of support and encouragement have been internet mailing lists … a huge network of parents worldwide with children currently on the diet.
We hope sometime in the next year to wean Leah from the diet and pray she will remain seizure free.
Janette, Garry, Rachel and Leah