Ketogenic therapy for adults

The first and largest study of the ketogenic diet in adults was published in 1930 (1) but despite positive results it was almost 70 years before another study reported similar findings (2). Seven studies have since been published using either the classical ketogenic diet ( 3,4,5,6) or the more liberal modified Atkins diet ( 7,8,9) to treat adults with drug resistant seizures. A review of adult trials suggested that effectiveness in adults is similar to that reported in children, with around half the cases achieving a 50% or greater reduction in seizure frequency (10). Evidence from a Norwegian trial is keenly awaited as this will be the first randomised controlled trial to report in adults (11).

However, it is not just a change in the frequency, intensity and recovery from seizures that adults report; many also notice a marked improvement in their alertness, energy levels and wellbeing despite there being no changes in anticonvulsant doses.

The use of more liberal ‘modified’ ketogenic diets has made this therapy a far more practical possibility for adults and where oral feeding is a problem, specially formulated  ketogenic tube feeds can be used.  However, ketogenic therapy is not necessarily suitable for all adults for various medical, social or lifestyle reasons.

Following are some essential requirements to consider:

  • Ketogenic therapy is effectively an anticonvulsant in food form. It needs to be supervised by a neurologist and a dietitian and integrated into the medical treatment plan, alongside existing medications. It requires biochemical and neurological screening to ensure that there are no underlying conditions that would make a ketogenic trial hazardous. It also requires a range of baseline blood tests before starting and then repeated at regular intervals throughout the therapy to check that the liver and kidneys are working well and that there are no deficiencies in vitamins or minerals.
  • A ketogenic diet requires a considerable change in food choices; cooking meals from scratch (much of the time) and weighing or controlling food portions. Meals generally need to be made from simple raw ingredients so a willingness to cook or regular help from a willing family member or carer, is essential. Outside the home, the availability of keto- friendly meals and snacks is limited, therefore forward planning and the packing up of meals and snacks to take to work, college etc. is essential.
  • Ketogenic therapy requires careful monitoring and adjustment. This involves keeping accurate records of food intake, seizures, blood ketones (or urine ketones), blood glucose and body weight and sharing this information regularly with the managing ketogenic team. In this way, the impact of the diet can be tracked and the prescription adjusted to optimise control of seizure symptoms and manage any side effects if they arise.
  • Moral and practical support from friends, family and even work colleagues.

Radically changing eating habits can be tough under any circumstances but ketogenic therapy is much more than this. It brings with it a new ‘responsibility’ for delivering the epilepsy treatment correctly, alongside a need for tracking of food intake and symptoms. Even with the best preparation, training and regular support from the ketogenic team, this can feel very time-consuming, obsessive and quite stressful in the early weeks. However, like learning any new skill, the whole process becomes very much easier in time and if symptoms start to improve, the sense of empowerment can be immense. Successful ketogenic therapy is a team effort with the individual at its centre. The level of involvement, understanding and support of family, close friends and any carers, can make such a difference to the ketogenic therapy experience and outcome.

  • For most adults, commitment to a three month trial of supervised ketogenic therapy is generally all that is required to indicate whether the impact on quality of life makes it worth pursuing longer term. When successful, the treatment may continue for two years or longer, depending on personal choice and keto team review.  When unsuccessful, the ketogenic diet is weaned gradually as normal dietary choices are reintroduced.

If you would like to consider a trial of ketogenic therapy please speak to your neurologist, epilepsy nurse specialist or your GP in the first instance.  They may be able to:

  1. Refer you to a UK centre providing an adult ketogenic service. Currently:
  • The National Hospital for Neurology & Neurosurgery in London ( NHS)
  • Matthews Friends Clinics, in Lingfield, Surrey.
  1. Supervise this locally if they have access to a dietitian with ketogenic experience or are looking to undertake training/ supervision to enable them to deliver this treatment locally

In the meantime, please refer to the Eating for Health & Wellbeing section of this website for simple guidance on more moderate and potentially beneficial changes that can be adopted before considering the ketogenic therapy option.

REFERENCES

  1. Barborka CJ. (1930) Epilepsy in adults: results of treatment by ketogenic diet in one hundred cases. Arch Neurol Psychiatry. 1930 23; 904–14.
  2. Sirven J, Wheldon B, Caplan D, Liporace J, Glosser D, O’Dwyer J, Sperling MR. The ketogenic diet for intractable epilepsy in adults: preliminary results. Epilepsia 1999 40; 1721–6.
  3. Klein P, Janousek J, Barber A & Weissberger R. Ketogenic diet treatment in adults with refractory epilepsy. Epilepsy Behav 2010 19; 575–9.
  4. Mosek A, Natour H, Neufeld MY, Shiff Y, Vaisman N. Ketogenic diet treatment in adults with refractory epilepsy: a prospective pilot study. Seizure 2009 18;30–33.
  5. Lambrechts DA, Weilders LH, Aldenkamp AP, Kessels FG, De Kinderen RJ Majoie MJ. The ketogenic diet as a treatment option in adults with chronic refractory epilepsy: Efficacy and tolerability in clinical practice. Epilepsy Behav 2012 23v(3):310-4.
  6. Nei M, Ngo L, Sirven JI, Sperling MR. Ketogenic diet in adolescents and adults with epilepsy. Seizure 2014 June; 23(6):439-42
  7. Carette E, Vonck K, De Herdt V, Dewaele I, Raedt R, Goossens L, Van Zandijcke M, Wadman W, Thadani V, Boon P. A pilot trial with modified Atkins’ diet in adult patients with refractory epilepsy. Clin Neurol Neurosurg. 2008 110(8): 797-803
  8. Kossof EH, Rowley H, Sinha SR, Vining EP. A prospective study of the modified Atkins diet for intractable epilepsy in adults. Epilepsia 2008 49; 316–9.
  9. Smith M, Politzer N, MacGarvie D, McAndrews MP, Del Campo M. Efficacy and tolerability of the modified Atkins diet in adults with pharmacoresistant epilepsy: a prospective observational study. Epilepsia 2011 52; 775–80.
  10. Payne NE, Cross JH, Sander JW, Sisodya SM. The ketogenic and related diets in adolescents and adults–a review. Epilepsia 2011 52(11): 1941-8.
  11. Modified Atkins Diet treatment for adults with drug-resistant epilepsy. Oslo University Hospital. gov Identifier: NCT01311440