How to Care for a Child With Epilepsy

6 ways to gain peace of mind

Child with stethoscope

If your child has epilepsy, the usual parental warnings — never swim alone, always wear a helmet when you ride your bike — take on added urgency because of the risk of seizures. You’re always on guard.

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But you can take steps to gain peace of mind and prevent serious issues, says Deepak Lachhwani, MBBS, MD, a pediatrician and epilepsy specialist.

1. Get to know the team

If you have a child with epilepsy , form a close partnership with your child’s doctor and the rest of the medical team. The better you know them, and the better they know your child’s situation, the easier it will be to communicate when issues do arise.

In addition, ask questions and seek as much information as you can. “Learn all you can about seizure disorders from reputable sources,” Dr. Lachhwani says. “We want families to be as informed as possible.” Sources include the Cleveland Clinic Epilepsy Center, the Epilepsy Therapy Project and the Epilepsy Foundation of America.

2. Ask about medications

“If we start with 100 kids with seizures, as many as 65 will respond to medications,” Dr. Lachhwani says. Those are good odds — and therefore, appropriate medication is the first course of action.

Medications for epilepsy have improved and are easier to tolerate than ever before. Still, if your child starts taking an anti-seizure medication, watch closely for side effects such as sleepiness and poor balance or slow responsiveness, which may occur if the dosage is wrong.

3. Consider surgery if needed

If your child is among the 35 percent not helped by drugs, take heart. About half of these children have focal epilepsy, which means they have seizures that originate in a specific area of the brain. Focal epilepsy can be treated with surgery.

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“These kids should be evaluated to see if they are good surgical candidates,” Dr. Lachhwani says. “If all goes well, 70 to 80 percent of ideal candidates will be seizure-free after surgery.”

4. Try lifestyle changes

Even if your child is among the small group of patients not helped by medications or surgery, you have options. For example, the ketogenic diet — a high-fat, low-carbohydrate regimen — may help control seizures in some children.

Ask about support if you choose this option. At Cleveland Clinic’s Epilepsy Center, for example, a team supports families who commit to the diet, which demands discipline.

5. Find a four-legged friend

For safety, some families engage a specially trained dog to protect their children. Seizure-response dogs can help when their owner has a seizure. It may be important to know the difference between seizure-response dogs and seizure-alert dogs. The latter are said to be able to sense and warn of an impending seizure.

“Anecdotally, we know of families who say this works for them, but we have no study to validate this observation,” he says.

6. Seek support

Often, it helps parents of children with epilepsy to know they’re not alone. A support group for parents — such as Cleveland Clinic’s Pediatric Epilepsy Support Group — provides a forum for parents facing tough decisions about medications, epilepsy surgery, invasive monitoring of seizures and other procedures.

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Don’t underestimate the value of speaking with parents going through the same things as you.

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