The outcome of children with intractable seizures: a 3- to 6-year follow-up of 67 children who remained on the ketogenic diet less than one year.
OBJECTIVE
To determine the long-term outcome of children with difficult-to-control seizures who remained on the ketogenic diet for <1 year.


METHODS
Between 1994 and 1996, 150 children with epilepsy, refractory to at least two medications, initiated the ketogenic diet according to the Hopkins protocol. Three to six years after diet initiation, all the families were contacted by telephone or questionnaire to assess their child's current seizure status, medications, and therapies.


RESULTS
Sixty-seven children discontinued the diet within 1 year of initiation. Follow-up data were available for 54 of these children. Ten subsequently had surgery, and three underwent VNS implantation. These operated-on children were significantly more likely to be >50% controlled at follow-up than were those managed with medications alone (p < 0.05). A statistically significant difference in long-term outcome was noted between those who responded while on the diet, even if they discontinued it before 1 year, and those who did not (p < 0.05), but no statistical correlation was found between length of time that they had remained on the diet and long-term prognosis.


CONCLUSIONS
Almost half of the children who discontinued the diet during the first year had a decrease in seizures when assessed 3-6 years later. Twenty-two percent of these had become seizure free without surgery. We were unable to ascertain whether this may have been due to new medications. Those who saw some improvement while on the diet were more likely to have a favorable long-term outcome. Resective surgery, in children who were candidates, or vagal nerve stimulation (VNS) implantation, was more likely to result in significant seizure improvement than was management with medications alone. Whether or not the diet was effective, most families did not regret trying it and would recommend it to others.
Marsh
Elisabeth B
EB
John M. Freeman Pediatric Epilepsy Center, Departments of Neurology and Pediatrics, the Johns Hopkins Medical Institutions, Johns Hopkins Hospital, 600 North Wolfe Street, Baltimore, MS 21287-1000, U.S.A.
Freeman
John M
JM
Kossoff
Eric H
EH
Vining
Eileen P G
EP
Rubenstein
James E
JE
Pyzik
Paula L
PL
Hemingway
Cheryl
C
D000293:Adolescent; D000328:Adult; D000927:Anticonvulsants / Q000627:therapeutic use; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D004035:Diet Therapy / Q000379:methods*; D004040:Dietary Carbohydrates / Q000008:administration & dosage; D004041:Dietary Fats / Q000008:administration & dosage; D004044:Dietary Proteins / Q000008:administration & dosage; D004351:Drug Resistance; D004827:Epilepsy / Q000178:diet therapy* / Q000188:drug therapy / Q000601:surgery; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D007223:Infant; D007657:Ketone Bodies / Q000096:biosynthesis / Q000097:blood; D007662:Ketosis / Q000209:etiology / Q000378:metabolism*; D008137:Longitudinal Studies; D008297:Male; D010349:Patient Compliance; D016896:Treatment Outcome
D000927:Anticonvulsants; D004040:Dietary Carbohydrates; D004041:Dietary Fats; D004044:Dietary Proteins; D007657:Ketone Bodies