Camp a Safe Haven for Teens With Epilepsy

Nwosu patientSummer camp is a rite of passage for many teens. Nothing to focus on but making new friends and learning skills is a welcome respite after a long school year. But for teens with epilepsy that experience daily seizures, this kind of getaway was not possible until Kamp Kaleidoscope came along.

“Our goal at Kamp Kaleidoscope is to treat the medical issues and get the campers back into action as soon as possible,” says Rana Said, M.D., medical director of Kamp Kaleidoscope and pediatric neurologist with the Comprehensive Epilepsy Center at Children’s. “In typical camp programs, after one seizure the teens would be removed from the group and possibly sent home.”

Read what Dr. Said has to say about the camp that has become a safe haven for so many:

This is my fifth summer to be part of the camp, and it has been extremely rewarding and a very humbling experience. Although leaving your family to go to camp out in the heat of July in Texas can be daunting, knowing that because of the medical team, many teenagers with epilepsy can have the joy of experiencing camp is extremely gratifying. It may sound cliché, but seeing what these kids go through day-in and day-out to overcome the challenges of their epilepsy, the complicated medication regimens, the limitations on normal day-to-day activities due to their frequently seizures, makes one put their own troubles into perspective.

Somehow towels that aren’t picked up from the bathroom floor don’t seem that important when you see a child have a seizure, stay in the infirmary to recover and then run back into the heat, so as to not miss a thing. Many of the counselors through the Epilepsy Foundation have had epilepsy themselves and are on medications. Their compassion and enthusiasm are infectious, and whenever we can, we try to join in on the activities.

Because many of the campers have frequent seizures and cognitive delays, there is one counselor for every three to four campers. This low counselor-to-camper ratio allows these teens the ability to participate in activities that a traditional camp could not manage. They go rock climbing, boating, fishing, learn archery, play golf, hike, swim and attend a dance, all despite their epilepsy.

A team like no other
The Children’s team that goes to camp is amazing. We have a wonderful group of inpatient nurses from the neuroscience floor, outpatient neurology and epilepsy nurses from the clinic, epilepsy nurse practitioners and physician assistants, epilepsy fellows and child neurology residents who help at the camp. We also have our social worker, child life specialist and administrators from Neurology and Epilepsy who work as part of the team. We are all committed to doing everything we can to keep campers safe, happy and engaged.

As the medical director, I am in charge of coordination of camp, staffing and treating the kids with medical issues. Many are taking a lot of medicine, so I handle the administration of scheduled medicines and deal with emergency management of seizures with the goal of treating, keeping them safe and getting them back into camp. There is such a camaraderie and trust among our team that we are able to provide the outstanding medical care even in a camp setting.

‘My soul has been nourished’
I come back from camp each year, completely and utterly exhausted, sleep-deprived and just a bit stinky. It is hot, exhausting and I hate bugs, but I love to see kids in a more normal environment – interacting with each other, playing basketball, having crushes, going to a dance and experiencing the joy of sleeping in a cabin. At the end of camp every year, my soul has been nourished, and I am full for the next long while with the strength and passion and love of life that I witness and experience at camp.

If you know a teen with epilepsy ages 15 to 19 who would enjoy a week at Kamp Kaleidoscope, email camp@eftx.org, or call 888-548-9716 for an application.

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3 Responses to Camp a Safe Haven for Teens With Epilepsy

  1. Luann Thomas August 6, 2013 at 9:21 am #

    Dr Said, You are truly a gifted and amazing doctor but more importantly the heart you have for our children leaves me humbled and at a loss for words to adequately say Thank You to you!! This summer we all were afforded the opportunity to get to know a tremendous young man from out of State. Because of your compassion, tenacity and perserverance, this young man was able to obtain the medical attention that he desperately needed. Like the ole saying goes, everything is bigger and better in Texas. Texas is blessed to have you as a Neurologist in Dallas, TX at Childrens Medical Center and Kamp Kaleidescope is blessed to have you as its Director. All our children who are afflicted with Epilepsy are afforded the opportunity to have all the same wonderful summer experiences as normal Teenagers because of you and the incredible staff of Children’s Medical. Thank you for making my daughter Abie’s first year of camp one of her most memorable expeinces of her 17 years!! As her parent, you make my heart smile because of love our kids like your own! May God Richly and Abundantly Bless You!! Luann Thomas

  2. Cristina Flores July 5, 2013 at 8:59 pm #

    Dr. Said, thank you for all that you do! You are a blessing and make such a difference in people’s lives.
    Thank you! Flores family

  3. Riyad Said,MD June 21, 2013 at 10:05 pm #

    RANA I am proud of you and your great work. Just keep it up
    Dad

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