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 in the Children’s Hospital. 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.
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.
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.
Watch the video from the 2008 Reunion
View Physician Presentations from the Reunion
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!
Watch the video from the 2006 Reunion
View Physician Presentations from the Reunion
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)
Many of our patients' families expressed interest to work with other families of children who have had epilepsy surgery. With that in mind, a directory of such families was created.
You may also contact us at:
Pediatric Epilepsy Support Group
c/o Deepak Lachhwani, MD
9500 Euclid Avenue, Desk S51
Cleveland, OH 44195
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.
View or Print the Project COPE forms below
- For more information and to submit your suggestions, contact Tatiana Falcone, MD, 216.444.7459.
Other activities have expanded beyond the weekly meetings to quarterly symposia; these avenues ease networking between families within, as well as outside the Greater Cleveland Area. Invited speakers offer insight and information on various topics relevant to families of children with epilepsy. Each symposium concludes with a question and answer session, an opportunity for stimulating discussions and exchange of ideas among attendees.
View additional information about Quarterly Symposia.
theStatus.com are free, private, personalized Web pages available to patients and families that help you stay in touch before, during and after a hospital stay, or any time care giving is needed. The service allows you control over communication and provides an easy way for friends and loved ones to respond with messages of support.
Parents of Children or Teens with Epilepsy – You Are Not Alone
Has your epileptic teen ever struggled with, or have you as his or her parent been concerned that your teen may suffer from:
- depression or anxiety
- problems socializing with peers or low self-esteem
- being bullied by classmates because of their epilepsy
Emotional and mental health is an important part of our overall wellness. Unfortunately, because of the fear and stigma our society harbors about mental illness, many of us are uncomfortable dealing with that part of our lives. So, we may overlook warning signs that we or our children are depressed or anxious, with sometimes disastrous consequences.
These resources can help you and your child learn more about seizures and epilepsy.
FAQs for Parents
Question of the month:
"Our child has done well since surgery and our doctor offered to gradually stop the medication altogether. Is this risky?"
The most likely outcome is that your child will have no further seizures. Your doctor will weigh the odds which would favor a successful medication withdrawal and share this information with you.
The following risks are rare, however they should be discussed:
Risk #1: Child may have one of the typical pre-operative seizures.
Plan: Restart medication; majority of children become seizure free again with just restarting medication.
Risk #2: Child may have a longer or harder seizure than pre-operative typical seizures.
Plan: Emergency care and restart medication.
Risk #3: Seizures may be difficult to stop again.
Plan: Your epileptologist will need to guide further management.
Teens with Epilepsy
Being a teenager comes with its own set of challenges, but being a teenager with epilepsy, raises even more questions and anxiety, such as explaining seizure to their friends, concerns about playing sports and driving, or not knowing when the next seizure will occur.
Read our Frequently Asked Questions concerning 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
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.