Sue Wood - MF Adult Dietitian
I have worked as a registered dietitian for 26 years treating a very wide range of paediatric and adult conditions and am currently employed part time by South Staffordshire Primary Care Trust. I consider myself to be a relative newcomer to the keto world – having fallen into it by chance in May 2008 when considering treating a young adult with epilepsy, who was referred by his neurologist for a Modified Atkins Diet (MAD). My initial late night encounter with the Matthews Friends website informed me that there was such a regime as the MAD for epilepsy (news to me) and that it could have a profound impact on quality of life and seizure patterns. I knew that the client had been declined diet treatment at a neighbouring hospital and that there was very little chance of treatment elsewhere so I was likely to be his last option. I expected to be able to link up with another UK dietitian who was experienced in treating adults with the MAD but to my amazement, I found no one. I did however receive lots of helpful guidance from ketogenic dietitians at the children’s hospitals in London, Birmingham and Glasgow who had some experience of using the MAD regime with older children. Subsequently I gained support from experienced dietitians in the USA and South Africa via Matthews Friends.
Our MAD ketogenic journey has been rewarding but not easy – particularly for my client and his family who have had to do all the hard work. The impact on seizure count has been far from clear – but there have been other less quantifiable benefits such as an increase in energy levels, more rapid recovery from seizures, improved self confidence and general independence. Overall it has been a very positive experience for all. Subsequently, I have been involved in supporting other clients with dietary modifications to help manage their epilepsy.
Dietary treatments (the MAD and Low Glycaemic Index / Low Glycaemic Load regimes) are not a panacea but clinical evidence suggests that they should be given serious consideration as a treatment option, alongside anti epileptic drugs, vagus nerve stimulation and surgery. However, I am only aware of two other adult dietitians (and associated neurologists) who are using such regimes to treat a small number of adults in the UK. We are building on our experience and gathering evidence case by case. We plan to produce a protocol for treatment so that adult neurologists and dietitians unfamiliar with dietary treatments for epilepsy have a baseline route to follow.
It is time that adults were given the choice. With the support the Matthews Friends team, the associated network of healthcare professionals in the UK and our international contacts, we believe the time is right to offer adults with epilepsy this choice.