Children and young adults with epilepsy face an array of psychological, physical and social challenges, a new analysis reveals.
Loss of control
Australian researchers reviewed 43 studies that included a total of more than 950 children, teens and young adults, and delved into their experiences with the seizure disorder.
"Children with epilepsy feel vulnerable from a physical and a social perspective," said study author Deepak Gill. He is a paediatric neurologist who heads the Children's Comprehensive Epilepsy Service at the Children's Hospital of Westmead, in New South Wales.
"One theme that came out was the loss of bodily control, and that the person during a seizure can feel physically overpowered, with worry that the seizures would lead to serious injury," Gill added. Those with epilepsy also reported feeling inferior and discriminated against.
Some of the comments from the youth were heartbreaking. One child said, "It's like being in a nightmare really, and you can't really wake up or just do something." Another said, "I have people make fun of me a lot at school because I have to take medicine and go to the doctor."
Another study participant doesn't mention epilepsy in job interviews, as employers may have preconceived notions. Another told of friends who disappeared after learning of the condition, according to the report.
Other recent studies have found that children with epilepsy are more likely to have other conditions, such as digestive problems, headache and attention-deficit/hyperactivity disorder (ADHD).
Two US doctors had different reactions to the findings.
The findings rang true with Dr Ian Miller, a paediatric neurologist and medical director of the comprehensive epilepsy programme at Nicklaus Children's Hospital in Miami. Dealing with the additional problems of epilepsy, such as the psychological aspects, he said, ''is one of the most neglected aspects of paediatric epilepsy, and is made worse by the difficulty parents have in getting insurance coverage for these services".
But another view came from Dr Ronald Jacobson, chief of paediatric neurology at Boston Children's Health Physicians/Maria Fareri Children's Hospital at Westchester Medical Centre in Valhalla, New York.
"This is a skewed picture," he said. "The findings do not apply to most kids with epilepsy."
Jacobson pointed out that the majority of children with epilepsy in the United States are controlled well with medication, and ''by and large outgrow it". One of the studies analysed for the review is from 1979. Since then, the improvement in epilepsy treatment has been dramatic, he noted.
Laws against discrimination
The range of problems experienced by children with epilepsy is varied, he acknowledged. "The critical goal is to get to seizure freedom, since it opens up so many avenues. We can't always get there, but that is the goal," Jacobson said.
Often it is achieved, he noted. "I'm sending several patients off to college this week," Jacobson said. One is going to an Ivy League college, where she will also play soccer, he added.
The US laws against discrimination are stronger than those in many other countries, he explained. Many practices here do pay attention to the psychological aspects of epilepsy, Jacobson said.
Miller said that parents should step up and ask for help when needed. If there seems to be a psychological issue, "make an appointment with your doctor to address that issue, and that issue alone, so that it doesn't get squeezed out by the medical decisions that must be made," he suggested.
According to Gill, responsive care from doctors and other health care professionals who address the social and psychological aspects of the disease can go a long way to helping those with epilepsy.
Making teachers aware of the condition is important, too, he said. Family and teachers should all communicate with the health care professionals to create a management plan, Gill said.
The new review is published online in Paediatrics.