The mission of our Pediatric Epilepsy Support Group is to meet and address the needs of families who are caring for children afflicted with difficult-to-control epilepsy.
The Pediatric Epilepsy Support Group was established in fall 2003. It is intended as an avenue for families to interact with the members of the support group, as well as with each other.
Caring for a child with refractory epilepsy is not easy and families often find their emotional resources spread thin. It is even more daunting to come to the hospital for evaluation with new and sophisticated diagnostic tests, participate in discussions involving epilepsy surgery as a possible treatment option and undergo procedures such as invasive monitoring of seizures for accurate surgical planning.
The acute void of support beyond the immediate pediatric medical-care-related interactions during their stay in the hospital has been bridged with the help of the Pediatric Epilepsy Support Group. The weekly meetings of the pediatric support group have been a source of strength and comfort for the family members.
The Pediatric Epilepsy Support Group then continues to be a platform for networking interactions beyond the hospital stay and following epilepsy surgery.
This group is a 'work in progress.' Getting our pediatric patients and families through difficult times is our main focus.
Adding a different dimension to complement its role, PESG is pleased to present a biennial venue for pediatric post epilepsy surgery patients. The essential role of these family reunions is to offer a platform to interact with others with whom they share a common thread: epilepsy surgery. Invited speakers offer valuable information pertaining to life after surgery. Alongside nurses and physicians who had been a vital part of their journey, these families celebrate life, hope, strength and determination.
Deepak Lachhwani, MD
Director, Pediatric Epilepsy Support Group
These meetings occur every week at Cleveland Clinic's main campus at Cleveland Clinic Children’s. The meetings are designed to accommodate the parents of our hospitalized patients by providing an opportunity for interactions, exchange of ideas, as well as an environment to express each others' concerns and draw comfort as their child goes through various evaluations, procedures or epilepsy surgery. For several years, scores of families have benefited from the weekly meetings of this support group.
In a collective effort, our team of Volunteer Ambassadors, Cleveland Clinic Child Life Support, Cleveland Clinic Social Work, and members of the medical and neurosurgical staff make themselves available for the parents. These meetings have been universally well-received, as is evident by glowing feedback from families who have attended, and the keen interest expressed by a number of them to become volunteer ambassadors themselves.
The PESG e-mail is a designated account to offer interaction and networking opportunities. Emails are forwarded and processed by PESG (Pediatric Epilepsy Support Group) staff to Volunteer Parent Ambassadors.
PESG voicemail is a dedicated phone line with a confidential voice mail box available for interested families. Messages left on this voice mail box are retrieved on a regular basis by the Volunteer Parent Ambassadors who then return the calls or forward them as appropriate.
216.445.9768 / 800.223.2273 x59768 (Toll Free)