We wanted to know about the benefits of summer camps for children with epilepsy and so we asked Patricia (Pat) Dean, Clinical Coordinator of the Comprehensive Epilepsy Program at Miami Children’s Hospital and the President of the Epilepsy Foundation of Florida to talk with us about her true passion — spearheading the camp program for children with epilepsy in Florida. Her campers attend Camp Boggy Creek, a member of the Association of Hole in The Wall Camps, whose founding members include Paul Newman and General H. Norman Schwarzkopf. Pat was recently inaugurated into The Schwarzkopf Society, representing the Epilepsy Foundation of Florida’s partnership with the camp. Pat shares her insights and tips about camps for children with epilepsy with epilepsy.com.

What are the benefits of summer camps for children with seizures?
The most important benefit for a child with epilepsy going to camp is that he or she gets to feel ‘normal’, sometimes for the first time! All too often, kids with seizures don’t get to experience many of the normal childhood activities. Attending a sleepover camp lets the child have the same opportunities as their peers and siblings, yet in a safe and supportive environment.

Another benefit is being away from their parents for a week or more, possibly for the first time! While this can be scary, tackling the new experiences at camp enhances the child’s sense of independence immensely. Whatever the activity (ie. fishing, boating, swimming), it’s important for each child to have the benefit of doing something for the first time on their own.

Tell us about epilepsy-specific camps and what parents should consider when choosing a camp.
Many of the Epilepsy Foundation affiliates run overnight camps that are epilepsy-specific and are appropriate for most children with seizures. These camps usually have epilepsy professionals available to provide medical supervision on-site at the camps. The camp activities are prepared by people knowledgeable about epilepsy and are appropriate to the children’s needs and safety concerns.

Most epilepsy-specific camps are appropriate for children age seven and older. It is important for parents to also consider their child’s developmental level as some children at seven may be developmentally younger and not yet ready for a camp experience. A major benefit of an epilepsy-specific camp is the ability of staff to know how to respond to seizures safely and appropriately and to understand and respond to the other problems that children with seizures may have.

Are there any children who would not be appropriate for an epilepsy-specific camp?
Children who have serious behavioral problems (for example running way, or aggressive behaviors that may jeopardize the safety of other campers) may be best suited for a camp designed to address the behavioral issues. Otherwise, the appropriateness of a child needs to be assessed in relation to the child’s needs and goals as well as the camp itself.

Are there times when day camps may be more appropriate than sleep-over camps?
The choice of day or sleepover camp depends on many factors. A child’s disability, other medical problems, developmental level, the availability of medical supervision, or a child or parent’s reluctance or fears may make a day camp experience more appropriate for some children than a sleepover camp.

What is the biggest challenge in preparing children for camp?
Talking parents into letting their children attend sleepover camp is my biggest challenge. Boggy Creek is a camp specifically designed for chronically ill children, so that helps me reassure parents. Appropriate medical personnel and volunteers are available around the clock, including doctors (pediatric neurologists and pediatricians), nurses and other emergency personnel.

NB: Not all camps are as well staffed, however, and Pat stresses the need for parents to thoroughly investigate the availability and training of staff.

What kind of concerns do children have about attending camp?
Most children who have been to camp before can’t wait to go back. Those who are attending camp for the first time may be afraid to be away from their parents. Parents can help their children cope with their fears by reassuring them they won’t be alone and that there will be many children their age with similar feelings. Distract the child from their fears by talking about the counselors and focusing on the exciting opportunities they’ll encounter.

What about kids with well-controlled epilepsy and no other medical or developmental problems. Should they go to camp specifically for children with epilepsy or can they go to any camp?
Children with well-controlled seizures and no other problems can go to any camp that suits their interests, just like any child. However, it’s important to make sure that the child will feel that they ‘fit in’. Parents should be very careful not to push their child to go to a camp that a sibling or friend attends if the child doesn’t feel that he or she will ‘fit in’ and be comfortable there.

Regardless of the type of camp, it’s still very important that camp personnel know how to respond to seizures and that the level of supervision is appropriate for the child. Parents should ask specific questions about the camp’s ability to deal with a seizure if the child has a breakthrough. They need to talk to the camp nurse, director and lifeguard, in advance if possible, and when they arrive there and discuss the specifics of the child’s seizures and how the camp needs to respond. For overnight camps that are not epilepsy-specific, it’s important to also make sure that the counselors are aware of the child’s seizures, know seizure first aid, and are trained in CPR.

How do parents determine which camp is best for their child in terms of an epilepsy-specific camp or a camp for children with multiple disabilities?
If their child is having frequent seizures the best bet is to consider an epilepsy-specific camp run by an Epilepsy Foundation affiliate. The child will be able to ‘fit in’ easily as they are surrounded by others with similar life experiences. If a child’s major disability is not epilepsy, it may be best to find a camp that is suited to manage the child’s major disability but is also well equipped to handle seizures.

Are there any particular concerns about water activities that parents should consider?
Parents must make sure that appropriate supervision is available for children with seizures during water activities. Many day camps use high school-aged counselors. Parents need to be sure that the counselors are capable of dealing with the seizures. They should make sure that the water activities are well supervised and that there is a certified lifeguard. Parents should ask camp directors very specific questions, such as:

• the number of staff assigned to water activities,
• the staff/camper ratio, and
• how far away staff are from a camper with seizures in the water.

NB: Pat stresses that staff should be within an arm’s length away from a child with seizures in the water. Most importantly, parents should ask the camp director and counselors specifically how they handle a child who has a seizure in the water.

What should a parent do when they are told that their child can’t attend a camp?
Parents need to make decisions. First ask questions to find out why their child can’t go. Maybe the camp doesn’t have the right staff or they are just not prepared to manage seizures. Or maybe they don’t know enough about epilepsy or are afraid.

The answers to these questions will help parents decide whether they want to intervene or prefer to seek a camp more appropriate for their child. If a parent feels that their child has been unfairly discriminated against or if they need help advocating for their child, an Epilepsy Foundation affiliate may be able to help. An EF affiliate may be able to train camp staff about seizures and appropriate first aid or inform parents of other camp options. When local training is not available, parents can refer the camp director and staff to www.epilepsy.com to learn about epilepsy, first aid, and camp issues.

What information do parents need to give to camp personnel in advance?
First, parents will need to get medical forms from the child’s pediatrician and neurologist completed. Give an accurate description of your child’s seizures, not just the name of the seizure type. Tell the staff exactly what happens during a seizure in sequence so they will be able to recognize an event, how long a typical one lasts, what should be done and when. For example, if a complex partial seizure secondarily generalizes, or seizures occur in clusters, tell them if a rescue medicine like rectal valium can be given.

Make sure that camp staff knows when and how to contact parents and the child’s doctor. Always include names of people other than the parents who can be reached in an emergency.

Most importantly, make sure enough seizure medicine is given to the camp nurse/personnel with your child! Include specific instructions on how to give the medicine and what to do if a dose is late or missed or side effects occur.

Epilepsy.com’s section on Seizure Preparedness and Adapting Plans for Summer Camps offers very helpful information and forms that parents can use to organize their child’s seizure information and create a seizure plan for camp personnel.

What other recommendations do you have for parents preparing their child for camp?

• Have a plan for every situation.
• Know the camp. If the camp is in a remote area, make sure you ask how long it takes to get help if needed.
• Know where the nearest emergency room is.
• Know the camp’s plans for managing status and transporting a child to the nearest emergency room.

What medical issues should be addressed before a child goes to camp?
Send your child in the most stable condition you can. Don’t be in the midst of medicine changes before camp, and check with the neurologist to make sure his or her medicines are okay. For example, even if a child has well-controlled seizures, you probably don’t want to lower or stop seizure medicines before he or she goes off to camp. This is especially important if your child is not going to an epilepsy-specific camp. But if you are sending your child to a camp designed for children with epilepsy, don’t let the fact that he or she is actively seizing stop you from letting him or her go. This is why we have these camps for these children specifically.

In your opinion, what is the minimum amount of supervision needed for a child with seizures attending camp?
If a child has well-controlled seizures, they probably are not at any more risk than other campers. If parents are comfortable with the camp, the child doesn’t necessarily need supervision by a doctor or nurse. For an overnight camp, however, campers with seizures should have nurse or medical personnel available. The amount and type of supervision will depend on the campers’ seizure control and other problems. Epilepsy-specific camps usually have close supervision, for example my camp has a ratio of 2:1, that is, two campers to one counselor.

Summary: Interestingly, Pat finds that children attending camp will often have fewer seizures than usual. Incredible changes in self-esteem and confidence have been seen. Pat feels that while the child has a great time, it is the mother that benefits the most – she gets a chance for one week to know that someone she can trust is taking care of her child, giving her time for herself and a respite from responsibility and seizures.

Ms. Dean’s experiences highlight how valuable summer camps can be for children with epilepsy and their families. If you are a parent of a child with seizures, consider sending your child to camp. Start by browsing through the Summer Camp directory

These camps are generally epilepsy specific or have special experiences for kids with disabilities. Then visit the Seizure Preparedness section and work your way through the section on Adapting Plans for Summer Camp. Hopefully, this will help you think about the different types of camping experiences, know what to look for and ask, and give you tips for preparing yourself, as well as your child and the camp staff, to manage your child’s seizures safely and appropriately.

Submitted on April 30, 2008
Edited by Steven C. Schachter, MD