Not Child's Play: Finding the right caregiver is a serious, important task

Dealing with a child with epilepsy can sometimes be a full-time job. But every worker gets some time off. And children have a natural need for independence.

So how do responsible parents get a respite while protecting their children and still giving them room to grow? Finding the right caregivers, educating them, and communicating well with them are keys, say experts and parents who are faced with this dilemma.

Edna Kane-Williams, vice president for programs and research at the Epilepsy Foundation, said making others aware of the problem and the worst-case scenario is important.

"I think one of the key items is making sure the caregiver is aware of first aid procedures," she said. "And then what is normal for your child in terms of seizures, the length, the duration, what to look out for, are there any symptoms they can watch for that might signal that a seizure is about to occur."

But Kane-Williams said it was important not to go overboard. She said giving appropriate weight and seriousness to any epileptic condition is fundamental.

"It doesn't necessarily entail calling an ambulance at the first outset."

Mary Ann Heinsman of Cape Girardeau, Missouri, has a son Tim, 6, who has partial, absence, and generalized seizures. A recent arrival in her town, Heinsman said that she goes by her "gut feeling" when dealing with new caregivers.

"I've found out that either some people are totally freaked out or some people on the other extreme are just too confident," she said.

She encountered the first example when she recently took her son to Sunday school.

"It was a new teacher and she just got freaked out and she was overwhelmed and I just thought, 'Today I need to stay with him. Even though I don't think he's going to have a seizure, I need to stay to alleviate her fears.' "

At the opposite end of the spectrum was Tim's new T-ball coach.

"I started to tell him about Tim's condition and how he would be going on medication and I got this 'Oh, that's fine. I know what to do. I'm the safety officer at work. He'll be OK.' And I thought, 'But he didn't ask me what kind of seizures does your son have? What do I need to look for?' And again I thought, 'OK, I need to be here.' "

Walking a Fine Line

It's the same fine line that needs walking when looking for day-care centers, Heinsman said.

"I guess what I look for is whether they are willing to find out more about this condition and whether they are willing to help and ask me more questions about it. If they act like it's going to be a big deal to accommodate us, then I know it's not a good fit."

Heinsman said that the nurse at Tim's public school has been very supportive, talking to her son and instituting a "buddy system" for Tim and other children with epilepsy.

"She said it's important to educate your son about what to do when he has a seizure," Heinsman said. "Tell him if he's not feeling right to get a buddy and come to see her and she would take care of him. Then if he has a seizure on the way, there would be someone to go get help."

Recently Tim showed up with a buddy at the nurse's office, complaining that he was feeling off-kilter. This time it was a false alarm.

"She told me, 'I think it was from eating too much pizza at lunch.' "

As children get older, new problems emerge.

Barb Zorzie, of North East, Pa., has a daughter, Leila, 11, who has simple and complex partial seizures. The problem has been getting worse since it began three years ago.

"What she's doing now is clustering," Zorzie said. "This last year has been like a train wreck."

But even as the medical problems grow, Zorzie, a nurse, is aware that her daughter needs to grow independent, like other children nearing the teen years.

"What do you do with them?" Zorzie asked. "It's a very important thing for them to get used to being alone. She's getting a little tired of going to grandma's."

Zorzie said that she has met subtle resistance from parents when Leila has gone to visit friends.

"People who know she has seizures just aren't really comfortable being in charge of her," Zorzie said. "It's 'What do we do if . . . what if we do if?' They don't want to be responsible for medications and I think it's a lot to ask of another parent unless you're very, very close. When they think of seizures, they think of grand mals. They don't think of simple ones, little ones, and it scares people."

An especially difficult problem is that standard preteen-girl activity---the sleepover. Zorzie said that one of Leila's seizure triggers is lack of sleep.

"That's tough. It's hard call. Do you let them go when you know the next day is going to be filled with seizures?"

It's also become something of a moral dilemma for Zorzie: To tell or not to tell the other parents.

"The last time I said to Leila, 'Shall I talk to Kathy's mom or not? What do you want me to do?' I said, 'I'm leaving this in your hands.' And she said 'I think maybe not. Let's see how it goes.'

"Now is that deceitful? Some people would say that it's deceitful to let a child who has seizures stay in a house without telling. She probably would never get invited back there if they found out I did that."

Zorzie has discovered that, like so many things about epilepsy, there is no one correct answer.

"I think it's important for Leila to spend some time away from me. We spend an awful lot of time together. She needs that little bit of independence. It's truly a balancing act."