Common sense
Worrying, as most parents can attest to, is part of the job of being a parent. However, when you have a child with epilepsy, worrying takes on new meaning as the potential for harm seems to lurk at every turn. When the summer season is upon us, many parents are concerned about water safety and rightly so. Yet, experts agree that exercising common sense, and not fear is the best precaution.

“It is absolute common sense. If you look at the medical literature, the most common cause of accidental death in people with epilepsy is drowning. In almost all of these cases the person with epilepsy was unsupervised,” said Mark Spitz, M.D., neurologist at the University of Colorado. He asserts that, “The best way to ensure water safety for a person with epilepsy is to make certain they are under close supervision.” Spitz also advises parents and caregivers, with children who have frequent seizures, to make sure the child wears a life jacket. “The frequency and severity of the seizures should determine the common sense one exercises,” said Spitz.

Mike Espino, aquatics expert for the American Red Cross, believes the best way for water safety to be maintained is to, “practice reach supervision at all times.” “Parents should be within arm’s length of their child in case of an emergency,” said Espino.

However, Spitz has a different perspective on the practice of reach supervision, “This is appropriate for a minority of patients with epilepsy, but most children are well-controlled and have the physical and mental abilities to have some independence beyond the “practice reach” concept. With the “practice reach” concept there would be no Special Olympics in water activities for children with epilepsy."

Misconceptions about drowning in children
Unlike adults, children usually drown quickly and quietly. According to Maria Dastur, water safety expert for National Safe Kids Campaign, “One of the biggest misconceptions is that you’ll hear a child drowning, which isn’t true. When a child drowns they don’t make a sound.” She also cautions parents and caregivers by saying, “Just because a child knows how to swim does not mean they are drown-proof.” In addition when using personal flotation devices, Dastur recommends inspecting the device for any abnormalities such as mildew, torn straps and foam degradation.

Encouraging independence
While the distinction between concern and fear is not an easy one to make when you are a parent of a child with epilepsy, it is essential to the autonomy of the child. Imposing unnecessary restrictions can be damaging to the child’s self-image. “It is crippling to be overprotective. When you are being overprotective you are damaging your child,” said Barbara Siegel, a mother of an 11-year old daughter with epilepsy. Another parent of a 19-year old with epilepsy, Diane DeVaul, agreed with Siegel, “I think it is important that kids with epilepsy are given the message that they can cope with new situations. Parents should be more worried about the implications of being overprotective because the message they are sending to their child is that they are incapable of coping and being independent.” Sandy Cushner Weinstein, director of Camp Great Rock believes, “Everyone’s epilepsy is different. The seizures aren’t the limitations, self-belief is.”

Camp Great Rock is an epilepsy camp designed for children with epilepsy and held each summer for one week. Both Siegel and Devaul have sent their children to Camp Great Rock and both have seen a tremendous change in their child’s level of confidence and autonomy. They attribute this in part to the expert staff at the camp, and also to their willingness as parents to let go.

Due to the wide spectrum of severity and frequency of seizures, it is up to the parent and camp staff to determine what they feel is “safe” for their child. Whatever you decide, remember the most important element other than safety is—fun!

For more information on water safety you can refer to the following websites:

http://www.safekids.org/tips/tips_water.html
http://www.redcross.org/press/hss/hs_pr/020530watersafety.html

We recommend you use the following tips when exercising water safety common sense. Remember, it is essential to communicate with lifeguards about your child’s seizure disorder before your child enters a body of water. It could save their life.

Topic Editor: Steven C. Schachter, M.D.
Last Reviewed: 12/15/06