JHH Ketogenic Diet Parent Support Group

The Johns Hopkins Hospital Ketogenic Diet Support Group was started in September 2007. When Carson was first diagnosed in February of that year, we knew absolutely nothing about epilepsy or infantile spasms, let alone the ketogenic diet. Like so many parents, we were frightened and overwhelmed during our stay at Johns Hopkins. Carson was one of a small handful of kids that had ever tried the diet as a first line therapy (before trying any medications), so we asked if there was anyone we could talk to about their past or current experience on the diet. Dr. Eric Kossoff got us in touch with some families who graciously shared their stories with us. It was so encouraging to hear about other families who had already embarked on this same journey. During Carson's 8 months on the diet, we found that the only time we felt truly comfortable and safe, was when we spoke to parents of other "keto kids". No one can understand the fear, anxiety and stress you feel as a parent of a child with epilepsy (or the complexities of being on the ketogenic diet), unless they have been there themselves. We realized that there was a real need for a support network for all the new families each month who were just starting out on the diet. Thus, the birth of the Parent Support Group!

The parent support group is held during the keto admission week at Johns Hopkins Hospital on the Pediatric Clinical Research Unit (PCRU) where the children's rooms are located. Every month, there are current or past keto parents present to meet with the new families who are starting the diet. There are no doctors or dieticians in attendance, so it truly gives everyone an open forum to ask questions and voice concerns. No medical advice is given as this is left to the expert team of doctors, nurses and dieticians. The goal is to give the families one to two hours during a hectic week, where they can laugh, cry, ask questions, get to know each other and most importantly, spend time with like minded folks who truly understand how they are feeling. The current and past families who volunteer to lead the forum offer a great deal of advice and tips on how to make life on the diet more manageable.

If you are a current or former JHH keto family and are interested in volunteering, please contact Gerry Harris at [email protected]. We always love having new families to become part of the group.

2011 Support Group Volunteer Schedule

January 5 - GH
February 9 - JP/DP and KF
March 9 - MM and CR
April 6 - AL and BW/KW
May 4 -EW
June 15 - CV and AB
July 13
August 3
Sept 14
October 5 - JP/DP and MM
November 9
No admits for December