Support for Patients & Families

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866.588.2264

Toll-Free: 866.588.2264

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
216.445.9818

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.

Reunion 2010»

Our 3rd Biennial Reunion was hosted on August 13-14, 2010 and it drew 150 patients and family members from 15 states across the United States. After the kick-off reception hosted on Friday night, parents had the opportunity to meet with other parents whose children underwent epilepsy surgeries. On Saturday, three workshops were offered to all participants on different topics, including medicines and medical issues; rehabilitation; psychosocial/school and learning issues. Break-out sessions provided parents with the chance to get their questions answered by a panel of experts in each workshop.

During the symposium, our patients and their siblings enjoyed supervised fun filled activities with our team of volunteers. The reunion concluded Saturday afternoon with a resource expo that addressed school re-entry, car seats/helmets, orthotics, insurance coverage, aquatics, adapted sports programs and hippo (equine) therapy.

Pediatric Epilepsy Reunion 2010

Reunion 2008»

Our Pediatric Epilepsy Support Group hosted a successful reunion on Aug. 1-2 that drew 280 attendees, including members of 61 families, from throughout the country, as well as from Ireland and South Africa.

This is the second reunion for children who underwent epilepsy surgery at Cleveland Clinic, as well as their families. Physician-led conference sessions were offered to adult participants, and children enjoyed special activities, coordinated by a team of volunteers.

The event culminated with the Rehabilitation Resources Exposition, which showcased the team effort of our rehabilitation specialists at the main campus and Shaker Campus. Breakout sessions, led by volunteer parent ambassadors, provided an opportunity for open conversations among participating family members.

Pediatric Epilepsy Reunion 2008

Reunion 2006»

More than 50 national and international families, with about 250 guests in attendance celebrated and shared their experiences of life after epilepsy surgery. The atmosphere brimmed with overwhelming emotions, hugs, laughter and some tears, as we all reminisced about the past. A significant feature of this reunion was the opportunity of the families to attend a symposium with a select group of invited guest faculty, on varied topics of post surgery issues. During the symposium, the patients and siblings enjoyed supervised fun filled activities with our team of volunteers. The success of this reunion was widely acknowledged, and the inspired families parted with hope and optimism. It is likely that such a get-together will become a recurring feature of the Pediatric Epilepsy Support Group!

Pediatric Epilepsy Reunion 2006

2014 Reunion

Cleveland Clinic’s Pediatric Epilepsy Support Group (PESG) is holding its biennial reunion on June 13-14, 2014 at Embassy Suites Hotel in Independence.

2014 Pediatric Epilepsy Surgery Reunion

Limited financial help may be available to assist families in attending the reunion. Each submitted request will be reviewed on a case by case basis. For additional information on the reunion, please contact Deepak Lachhwani, MD, Director, Pediatric Epilepsy Support Group at 216.445.9818.

Email Us

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.

Call Us

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)

Family Directory

Many of our patients' families expressed interest to work with other families of children who have had epilepsy surgery. If you are interested in additional information, please contact:

Deepak Lachhwani, MD
Director, Pediatric Epilepsy Support Group
216.445.9818

What is Project COPE?

Collaboration for Outreach and Prevention Education (COPE) for Children with Epilepsy.

The COPE program consists of four sessions geared toward either the parents of children/teens who have epilepsy or the children/teens (ages 12 to 18) themselves.

Participants will learn about the importance of emotional wellness/mental health and how to cope with everyday stressors they may face.

Improving Access to Mental Health Care for Youth with Epilepsy

Despite continued progress in the treatment of epilepsy, the psychosocial outcome in adults is reported as poor, even in patients who reach seizure freedom. Rates of psychopathology are high in patients with epilepsy, ranging from 37 percent to 77 percent in children and adolescents with epilepsy. An analysis of 29 cohorts of patients with epilepsy demonstrated increased risk of suicide compared with the general population.

Resources for Parents of Youth with Epilepsy

Read our Frequently Asked Questions concerning teens with epilepsy.

Parents of Children or Teens with Epilepsy – You Are Not Alone»

FAQs for Parent »

Teens with Epilepsy »

Epilepsy and Driving»

Epilepsy and Dating»

Epilepsy, Alcohol and Drugs»

Epilepsy, Work and College»

Epilepsy and Depression»

Epilepsy and Sleep»

Do you have questions?

Epilepsy experts are here to answer your questions.

Ask an Epilepsy Specialist

Appointments

To make an appointment call us locally at 216.636.5860 or toll-free at 866.588.2264.

Need appointment or locations information for services in Cleveland and nearby suburbs?
Interested in epilepsy services in Florida?

Cleveland Clinic Florida’s adult epilepsy program is offered at the Weston campus, located just south of Fort Lauderdale.

 

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