Eric H. Kossoff, Sarah C. Doerrer, Steven P. Winesett,
Zahava Turner, Bobbie J. Henry, Stacey Bessone, Anthony Stanfield, Mackenzie C.
Cervenka. Diet Redux. Outcomes from Reattempting Dietary Therapy
for Epilepsy. Journal of Child
Neurology. Published online ahead of
print.
Abstract
The outcome for patients attempting dietary therapy for
epilepsy a second time is unknown. Twenty-six subjects treated with the
ketogenic diet as children who then began either the ketogenic diet or a
Modified Atkins Diet (MAD) at least 6 months later were evaluated. The mean age
at the first diet trial was 5.6 years and at the second diet trial was 11.5
years. Most restarted dietary therapy because of persistent seizures (65%) or
recurrence after seizure freedom (19%). Overall, 77% had a ≥50% seizure reduction
with the first diet, and 50% with the second diet, P = .04. Individual subject
responses were largely similar, with 14 (54%) having identical seizure
reduction both times, 9 worse (35%) with the second attempt, and 3 (16%)
improved. The second diet trial was more likely to lead to >50% seizure
reduction if the first trial was started at a later age (7.4 vs 3.9 years, P =
.04).
From the manuscript:
Typically, due to concerns about metabolic side effects and
the fact that a significant residual effect of seizure reduction occurs after
the ketogenic diet is discontinued, the ketogenic diet is discontinued in
children after approximately 2 years and other options (eg, further
antiepileptic drug trials or vagus nerve stimulation) are then implemented…
For some, the ketogenic diet was short-lived secondary to
side effects, problems with restrictiveness, and/or rapid recognition of
inefficacy. However, there are other patients who had positive experiences with
the ketogenic diet, including periods of seizure freedom, but for various
reasons the ketogenic diet was eventually discontinued. Both types of patients
may reconsider the use of dietary therapy years later should seizures recur or
remain uncontrolled…
Of the 7 children who were on the first diet for fewer than
6 months, all were on the second diet slightly longer (14.1 vs 2.4 months, P =
.3). However, there was no clear improvement concurrently in seizure control,
with only 1 patient having 50% to 90% seizure reduction. Six of these 7
children with brief first diet durations discontinued the second diet because
of inefficacy again…
Our study suggests that a variety of patients start dietary
therapy a second time, often years later. The majority did so for continued
seizures after an initial positive response to the ketogenic diet and failed
response to further antiepileptic drug trials and/or vagus nerve stimulation.
Many of these patients had Lennox-Gastaut syndrome or other childhood-onset
epilepsies that would not be expected to resolve, and two-thirds were
intellectually disabled. Having a gastrostomy tube for the ketogenic diet or
utilizing the Modified Atkins Diet for adults likely helped influence the
decision to retry dietary therapy because of perceived improved tolerability
and limited negative effect on lifestyle.
Although as a group, the chances of improvement were less
overall with the second diet attempt, when examined individually, approximately
half of patients had identical responses, including 12% who had a greater
reduction in seizures during the second trial. If a child was seizure-free
during the first diet attempt, the majority became seizure-free again. If a child
had poor seizure response with the first diet attempt, nearly all had a poor
response again. Based on these findings, a neurologist can counsel a family or
patient that the first response is likely to predict the outcome with repeat
treatment. Older children at the time of the first diet attempt were more
likely to respond the second time (or perhaps younger children are less likely
to improve). This may reflect the severe nature of some infantile-onset
epilepsies (eg, Ohtahara syndrome, infantile spasms) and that their epilepsy
may be just as intractable later in life and not respond well to dietary
therapy.
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