Adult Information Leaflet
Ketogenic diet treatments for the management of intractable epilepsy in UK adults
Written By: Susan Wood RD – Adult Dietitian – Matthew’s Friends.
Ketogenic diets are an established evidence based therapy option for children with medically intractable epilepsy in the UK. (Neal et al.,2008).
For decades there has also been evidence indicating that ketogenic diet therapy can produce at least a 50% reduction in seizure rate in approximately half of the adults on the trials. (Barborka,1930; Sirven et al.,1999; Kossoff et al.,2008;Carrette et al.,2008). It is not just the change in seizure rate that is of interest - many individuals report improvements in their energy levels, their clarity of thought and a more rapid recovery from seizures even when drug treatment remains unaltered. In some cases, anti epileptic drug (AED) doses may be reduced slowly over time or even stopped.
In the UK, those who are diagnosed with epilepsy in adulthood or have not had the opportunity to trial dietary therapy in childhood, have little access to ketogenic treatment options. This is because the specialist ‘keto’ teams (generally a Consultant Paediatrician / Paediatric Neurologist/ Specialist Dietitian / Epilepsy Nurse Specialist) are currently only found in the children’s hospitals and a few specialist children’s departments in large hospitals across the UK. Once you transfer to adult care, the door to ketogenic diet treatment is generally firmly closed.
The advent of more liberal ‘user friendly’ ketogenic regimes such as the Modified Atkins Diet (MAD) (Kossoff & Dorward 2008) and Low Glycaemic Index Treatment (LGIT) (Pfeiffer et al.,2008) make dietary treatments a more practical possibility for adults and children alike. However, ketogenic diet therapy for epilepsy, even in its relatively liberal form of a MAD should never be considered as an easy option—or a 100% safe option. There are significant practical and social implications, there can be side effects and the impact on the health of adults if used long term is still unknown.
At the time of writing, only eight adult clients are known to be receiving supervised ketogenic diet therapy in the UK. One of these successfully initiated the treatment himself (assisted by a research contact in the USA) and has recently returned to regular neurological review.
There are plans to develop a ketogenic diet treatment protocol for adults and share this with interested teams across the UK. Using a consistent approach would enable comparative data to be collected and used to inform future developments and help to build a UK evidence base.
It is hoped that sometime in the future, ketogenic diet therapy will be added to the treatment toolbox alongside AEDs, vagus nerve stimulation and surgery. In this way more UK adults whose lives are dominated by epilepsy will be adequately supported to safely trial this therapy and find out for themselves whether switching to a form of ketogenic diet can significantly improve their quality of life or not.
Neal EG, Chaffe H, Schwartz RH, Lawson MS, Edwards N, Fitzsimmons G, Whitney A, Cross JH. (2008) The ketogenic diet for the treatment of childhood epilepsy: a randomised controlled trial. Lancet Neurol.,7(6):500-6.
Barborka CJ.(1930) Epilepsy in Adults:results of treatment by ketogenic diet in one hundred cases. Arch Neurol 6:904-914.
Sirven J, Whedon B, Caplan D, Liporace J, Glosser D, O’Dwyer J, Sperling MR. (1999) The ketogenic diet for intractable epilepsy in adults:Preliminary results. Epilepsia, 40(12):1721-1726.
Kossoff EH, Rowley H.,Sinha SR,Vining EPG.(2008)A prospective study of the modified Atkins diet for intractable epilepsy in adults. Epilepsia, 49/2(316-319).
Carrette E, Vonck K, de Herdt V, Dewaele I, Raedt R, Goossens L, Van Zandijcke M, Wadman W, Thadami V, Boon P. (2008) A pilot trial with modified Atkins’ diet in adult patients with refractory epilepsy. Clinical Neurology and Neurosurgery 110:797-803
Kossoff EH, Dorward JL. (2008)The Modified Atkins Diet. Epilepsia, 49(suppl. 8):37-41
Pfeiffer HH, Lyczkowski DA, Theile EA. (2008) Low glycaemic index treatment: Implementation and new insights into efficacy. Epilepsia 49 (Supplement 8):42-45.
YOU MUST consult your own medical Keto Team before making ANY changes to your treatment or your child’s treatment, Matthews Friends cannot be held responsible if you do not heed this warning.