A hot topic in the epilepsy world today is the concept of “transition.” Teenagers with epilepsy grow up to be adults, and, as patients approach the age of 18 years, most child neurologists (like myself) start to plan a transition for them to adult neurologists to continue their care. This is hard on patients, parents, and even neurologists. It is just as important to plan ahead and not do this at the last minute. For this reason, societies like the American Epilepsy Society have recently created guidelines for making this transition as smooth as possible.
For most patients receiving anticonvulsants, considering (or having had) surgery, or using vagus nerve stimulation, there are few major issues when transitioning from a pediatric to an adult epileptologist. The transition of patients on ketogenic diets can be much more complicated, though. Dietary treatments are mostly used in children, and, although that is changing rapidly, adult neurologists and dietitians are often uncomfortable and unfamiliar with ketogenic diets.
What should be done when a child still needs the diet and turns 18 years old? Overall, the need for this transition is pretty rare. Most children remain on the diet for up to 2 years, at which point the diet is weaned to discontinuation. Older adolescents especially may be taken off the ketogenic diet in preparation for transition to an adult provider knowing care may be a problem. However, some children who have the ketogenic diet discontinued will have recurrence or worsening of seizures and will require long-term dietary management.
Until recently, what to do with children on ketogenic diets who become adults had never been studied. We recently reviewed and published our experience at Johns Hopkins Hospital transitioning patients on diets to adult providers (Kossoff et al., 2013). Ten teens were found over the past 20 years; so as suspected, this was not a common situation. All started dietary therapy as children or adolescents, 9 of 10 with the ketogenic diet. Patients in this study had somewhat prolonged use of dietary management, an average of 16 years (range, 4 to 32 years). Eight patients had moderate to severe developmental delay and were dependent on parent or sibling caregivers for food preparation.
Three major categories of transition options were identified as used by young adults with epilepsy on dietary therapy. First, the most common (6 patients), was a transition to the Johns Hopkins Adult Epilepsy Diet Center (AEDC). This center opened here in August 2010 and is focused on helping adults succeed on dietary therapy for their seizures. The second option (2 patients) was to transfer care to an adult neurologist who was not a member of a ketogenic diet team. The third option (2 patients) was to continue care through a pediatric ketogenic diet center (mine). Those patients followed in the AEDC were slightly more likely to remain on dietary therapy following transition (5 of 6 versus 1 of 4, p=0.12). The AEDC team was motivated to help these patients, keep them on dietary therapy, and provide adequate nutritional support. That is probably the reason most of these patients were able to stay on the diet.
Is this the best option? We think so, but there certainly may be other options as well. All child neurologists are also trained as adult neurologists, so there is no mandatory reason why a transition has to happen – keto patients could stay in clinic with their child neurologists. Dietitians similarly can see both children and adults. However, as adult dietary therapy centers continue to increase in popularity, I suspect this will be a great way to smooth out the transition process for parents looking for a ketogenic home for their now “grown-up” kids!
Kossoff EH, Henry BJ, Cervenka MC. Transitioning pediatric patients receiving ketogenic diets for epilepsy into adulthood. Seizure 2013;22:487-489.