Abstracts

THE FIRST 50: THE KETOGENIC DIET EXPERIENCE AT A NEWLY ESTABLISHED KETOGENIC DIET PROGRAM

Abstract number : 1.279
Submission category : 8. Non-AED/Non-Surgical Treatments (Hormonal, ketogenic, alternative, etc.)
Year : 2009
Submission ID : 9662
Source : www.aesnet.org
Presentation date : 12/4/2009 12:00:00 AM
Published date : Aug 26, 2009, 08:12 AM

Authors :
Rana Said, M. Spears and S. Arnold

Rationale: The ketogenic diet (KD) is a well-recognized dietary therapy for the treatment of intractable epilepsy and certain metabolic disorders. We wanted to review our data to compare outcomes with recent published reports from large ketogenic diet programs. Methods: The ketogenic diet program at the University of Texas Southwestern Medical Center, Children's Medical Center at Dallas was established 3.5 years ago. We undertook a retrospective ketogenic database and chart review of all our patients who had initiated the ketogenic diet during this period. All patients were treated with the classic ketogenic diet or with a modification using medium-chain triglycerides. We analyzed the efficacy our pediatric population and evaluated several outcome measures, including: cause of seizures, type of seizures, and reason for initiating the KD, percentage reduction of seizures, change in number of AEDs, age at initiation, side-effects, and duration on KD therapy. We reviewed reasons for discontinuation. Results: 54 children were started on the ketogenic diet at Children's Medical Center at Dallas from July 2005-February 2009. 31 patients are still on the KD while 23 have discontinued the diet for various reasons. Mean age at initiation 4.1 years (range: 2 months-14.3 years). Duration of follow-up ranged from 4 months to 5.2 years. The majority of patients had symptomatic generalized epilepsy. One third had epileptic encephalopathies (infantile spasms and Lennox-Gastaut syndrome). All but one patient had epilepsy (one had only pyruvate dehydrogenase deficiency without seizures). Efficacy rates were comparable with those previously reported. Thirteen percent were seizures free, 21% had a 50-90% reduction in seizures, 28% had a more than 90% reduction but were not completely seizure-free, 32% had less than 50% reduction, and only 6% had worsening of baseline seizures. Fifty-one patients (51/54) were on the diet for greater than 3 months, with three-quarters of these patients (38/51) remaining on the KD for greater than 6 months, decreasing to 55% at one year and 33% at 2 years. Five patients have been on the diet for greater than 3 years (10%). Fifteen (15%) were tapered off all AEDs while another 19% had a reduction of one or more AEDs. The KD was well tolerated overall. However, we had one SUDEP in an 11- year old girl who had been seizure-free on the KD for 1.8 years and was off all AEDs for > 1 year. Conclusions: As a newly established ketogenic diet program, we have treated 54 patients to-date,, with results comparable to other well-established centers. Most patents who did not continue on the KD did so due to concerns of poor weight gain or food refusal, although three stopped due to lack of efficacy/loss of efficacy. As seen in other studies, the KD is an effective and generally well-tolerated therapy. This is true for even the most refractory patients, regardless of etiology or epilepsy syndrome. In our experience, when used in a standardized fashion, a dedicated ketogenic diet team can provide optimal delivery of this effective therapy.
Non-AED/Non-Surgical Treatments