James Dunne Story
Here is James Dunne. He is seizure free, drug free and so very happy now! This is all because of the amazingly powerful and effective Ketogenic diet.
When he was two, he developed severe, drug resistant epilepsy. He was knocked down so much but he got up again and played on! He has taken harder hits than Peter and Simon put together! He wore a scrum cap to take the sting out of the blows. They were relentless. His head used to drop to the floor like a bowling ball. It was torture for him and torture for us. He tried six drugs, none of them worked. After two years we became desperate for a cure.
So he took the dietitians advice and he embarked on a two and a half year feeding plan, with no exceptions and no days off! He took a specific measurement of protein, carbohydrate and fat, three times a day, seven days a week. The Ketogenic diet is a high fat diet. He did the blood tests. He checked the glucose and ketones twice daily. It took months to get it right. Fine tuning the diet to suit his body took some amount of observation and record keeping. Every detail of James was taken into account when tweaking the programme; physical activity, stamina, mood, speech, learning, appetite, interactions and energy levels. It was so very difficult, but the motivation to continue was there, because he just kept getting better!
After six months, he finally became seizure free, on his fifth birthday. What a birthday present! Everyone’s hard work had paid off. He continued the diet for two years as planned. It was such pressure on a young lad, no parties and no break outs! We avoided crowds because where there are people, there is always food! We didn’t talk about food. We kept food out of sight and we certainly didn’t make toast when he was nearby!
When we started the diet he hardly had the energy to chew and he threw most food back at me. By the end of the diet he would try anything and I actually can’t think of a food he doesn’t like now!
On his sixth birthday he visited the Munster team at a training session. They gave him a jersey and a birthday card. Paul, Donnacha, Peter and Simon spent a lot of time talking to James. Was James giving them advice on how to win a battle I wonder?
We were halfway there. He pushed on for another year despite awful tummy pain. Everything was weighed to the gram. He drank the cream, he ate the butter. He did what he had to do to rid himself of those bloody seizures. He knew it had to be done. His body told him so.
Now he is seven, he is off the diet and there is absolutely nothing stopping him from living life to the full.
He is a Ketogenic role model.
He is a true inspiration for dietary treatment of epilepsy.
It was so hard, but so worth it!
Thank you to all who have helped us on our journey, especially staff at CUH and Matthew’s Friends.