Epilepsy & the Ketogenic Diet – A Grandparents Perspective

 It is now three and a half years since our dear little grandson Mathew was born and he was progressing normally up to his first birthday. Starting to crawl, trying to make word sounds; a beautiful little boy loved and adored by all. During his second year there was a change. He seemed to stop developing and towards his second birthday he started to “bob” his head occasionally. No alarm bells were sounding anywhere until he started to drop to the floor like he was shot. Some time later epilepsy was diagnosed and he was started on antiepilepsy medication in a large Brisbane hospital. The atonic seizures now some ten plus per day persisted. Another medication was trialled with the same negative result. Weeks later and a third medication resulted in a severe allergic reaction. The family was now in great turmoil.

The Ketogenic Diet came to the familys attention and it was mentioned to the Pediatrician who noted it was unproven and difficult to use but gave the go ahead.

Our son checked into the hospital with Mathew for two days and nights of tests prior to the diet starting. They lasted one night. Mathew was placed in a steel sided bed with tiled floors all round. No prizes for guessing how he fared with his “drops” in that environment! Our son took Mathew home the following morning – safer at home!

The hospital Nutritionist gave Mathews parents a Menu to follow and it had one meal with a four to one ratio and the rest were various other ratios. Two weeks later and the little fellow was getting mighty resentful of the same meal three times a day. It was then that the family read the book by Dr Freeman “The Ketogenic Diet”. What is advocated in that book and how epilepsy is approached and treated at the Johns Hopkins Hospital was a revelation. Needless to say, what we experienced was almost diametrically opposite to the book.

Mathew has been on the diet for over a year now and has improved dramatically. He will now go for almost a fortnight without a drop but with a few nods. He now recognizes visitors and smiles with recognition. He interacts much better than he did a year ago. He still has no speech yet and has a long way to go before he catches up but he is a different little boy to what he was.

Conclusions. If you have a child with  epilepsy who has failed two or more medications, read Dr Freemans book first. Then read it through again and take notes then go and see your Pediatrician and Nutritionist. If you decide to go ahead with the diet download the Stanford University menu planner as well. It’s a nifty little Excel programme which will save hours. You will need patience, support, plenty of will power and tenacity but it will be worth it. Contact us through Epilepsy Qld if we can help.