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Published on: January 7, 2019
How do parents find out about the ketogenic diet?
Eric H Kossoff1, Sarah S Doerrer, Zahava Turner
1Department of Pediatrics, The Johns Hopkins Medical Institutions, Baltimore, MD 21287, USA. ekossoff@jhmi.edu
Parents surveyed found the ketogenic diet (KD) helpful for seizure reduction, with short wait times after referral. Neurologist support was generally high, though varied based on pediatrician and referral source.
Area of Science:
- Pediatric Neurology
- Dietary Therapies
Background:
- Child neurologists historically consider the ketogenic diet (KD) a last resort treatment.
- Parental perspectives on KD initiation and support are crucial for understanding treatment adoption.
Purpose of the Study:
- To evaluate parental experiences and perceptions of the ketogenic diet (KD) for pediatric epilepsy.
- To assess wait times, reasons for initiation, information sources, and neurologist support.
Main Methods:
- Anonymous survey administered to 107 parents of children starting the KD.
- Data collected on time from epilepsy diagnosis to KD, wait time post-referral, reasons for KD, information sources, and neurologist supportiveness.
Main Results:
- Average time from epilepsy to KD onset was 2.8 years; average wait time post-referral was 1.7 months.
- Primary reasons for KD initiation: seizure reduction, less intense seizures, medication reduction, and cognitive improvement.
- Majority (72%) obtained KD information from neurologists; 53% reported maximal neurologist support (score of 10).
Conclusions:
- The ketogenic diet (KD) is initiated for significant seizure control benefits in pediatric epilepsy.
- While neurologist support is generally high, factors like pediatrician support and self-referral correlate with higher perceived support.
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