Caring for a Child with Epilepsy
Advice for families and caregivers
When should I call 911?
What safety measures should I take once my child has been diagnosed with epilepsy?
How can I help my child with epilepsy not feel different from others?
How can I find others in my situation?
I've noticed some behavior changes in my child with epilepsy. How should I handle them?
How can I convince my child to take her epilepsy medication?
What should I do if my child misses a dose of her epilepsy medication?
How can I help convince my child to take her epilepsy medication even though she still has seizures?
How can I prevent injuries during seizures?
Witnessing his sibling's seizure has upset my son. How should I handle that?
I feel like an inadequate caregiver for my child who has epilepsy since I didn't pay attention to the warning signs.
How do I help my daughter who feels slow and dumb since she has been on epilepsy medication?
How can I help my child who is upset that she has gained a lot of weight gain since she began her epilepsy medication?
What is more important in choosing a doctor, that he be well known or attentive to our family's needs?
How can I make sure my child gets enough sleep to to prevent seizures, given her complicated schedule?
Should I prepare my child's friends and their families for the possibility of seizures?
How do I explain brief, unnoticed seizures to friends, teachers, and family?
Are there summer camps for children with epilepsy?
What do I need to tell the school about my child's epilepsy?
How can I improve self-esteem in my teenager with epilepsy?
My daughter is going to college and I wonder about requesting special accommodations due to the epilepsy?
How can I help my daughter overcome her reluctance to get close to others due to fear of rejection due to the epilepsy?
How will the epilepsy affect my child's future career choices?
What will happen if my daughter gets pregnant?
What chance is there that my daughter's children will inherit the epilepsy?
How can I find someone to care for my child with epilepsy?
- Some doctors recommend not touching your child or interfering in any way with the seizure. Others recommend turning your child on her side, which helps with breathing. Some physicians recommend protecting a child's head with a pillow, jacket, or anything soft. Others recommend loosening any clothing that constricts your child's movements. Talk with your doctor to see what is advised in your particular child's situation.
- Don't put anything in your child's mouth. There is no danger that children will swallow their tongues -- that's a myth surrounding seizures.
- Move any sharp objects out of the way.
- Your child has another seizure within five minutes
- The seizure lasts longer than usual or is especially severe
- Your child is unresponsive after a seizure
- Install a monitor in your child's bedroom in case you can hear when a seizure occurs.
- Make sure your child sleeps in either a regular bed or a mattress on the floor, as opposed to a top bunk, in case a seizure occurs when your child is in bed.
- For children who have frequent and severe seizures in which they fall down, a helmet that fits well and has a face guard can protect against head and facial injuries.
- Avoid situations in which there will be flashing or strobe lights -- which can occur in movies, videos, on TV, and in dance clubs -- as they can induce seizures.
- Make sure your child wears a life vest whenever he or she is near water, including a backyard pool.
- Closely monitor showers and baths to prevent serious injuries from seizures, and make sure drains are not clogged to prevent drowning.
- Take extra precautions when your child will be around traffic (crossing streets) and in elevated locations. It is safest to have someone who is capable of intervening accompany your child in those situations.
- Create an easy-to-follow list of what to do in case of a seizure and put it on the refrigerator or other accessible location. Go over this list with all babysitters and be sure to include contact information for you, another responsible adult, the doctor and 911. Send a copy of this list along with your child to any friends' homes, activities and sleepovers, and talk with adults in charge about what to expect and do if your child has a seizure.
- Try to find a middle ground between safety and overprotection. You may have to continually adjust your precautions based on your child's health and age.
- Act as low-key as possible about the seizures. Let your child know that the seizures are a medical condition due to temporary activity in the brain and not anything to be ashamed of.
- Be aware that children with seizures are at increased risk of depression, low self-esteem and anger. Consider getting counseling for children if they appear less interested in friends, school or normal activities; or if they exhibit excessive anger, poor self-esteem or lack of self-control. Other more traditional symptoms of depression -- changes in sleeping or eating patterns -- may not actually indicate depression in people with epilepsy as extra sleep is important to forestall seizures, and the medications may make your child sleepy and hungry.
- Educate your child about epilepsy. The video "Take Charge of the Facts" features kids with epilepsy and a doctor discussing their conditions and how to handle seizures .
- Ask your doctor or your local epilepsy organizations if there are camps or support groups for children in the same age range. Meeting other kids with epilepsy can help your child feel less different and alone.
- The Epilepsy Foundation of America has an online forum where children can contact other children with epilepsy, share concerns and offer support.
- Focus on your child's strengths. Try not to make the epilepsy the main topic of interaction with your child. Do what you can to help your child build on her strengths by encouraging her to take a class or participate in a sport in which she excels.
- Parents of children whose epilepsy is controlled by medication have an easier time than those whose condition is not. These children can lead relatively ordinary lives, though they will require some extra monitoring. However, children with uncontrolled epilepsy need constant monitoring. Their epilepsy may interfere with their participation in ordinary activities, learning and socialization. Other children may be reluctant to get together with them due to fear of witnessing a seizure. Children in this category would especially benefit from a support group with others in similar situations, as would their parents. Contact your local Epilepsy Foundation for more information.
Consider joining a support group for parents of children with epilepsy, many of whom probably have similar feelings. Check your local hospital or branch of the Epilepsy Foundation to see if there is a support group in your area.
- Try reasoning with your child. Most kids are very motivated to not have seizures at school, and taking the medication is a way to prevent that.
- Try to incorporate your child's medication into normal family routines so that it becomes an accepted part of the day.
- Is it okay to take it several hours later, or should he/she wait till the next scheduled time?
- What to do if your child has a stomach virus and can't keep anything down, including medication?
- If you are having trouble finding the correct medication for your child, remind her that the ultimate goal is to be seizure-free and that the only way to attain that goal is to keep trying medications till you find the right one.
- If side effects are a problem and are the reason your child resists the medication, be sure to discuss this with your physician. Alert the doctor as soon as possible about side effects and keep a written record of any that occur, the time of day and under what circumstances.
- If your physician is not responsive to your concerns about side effects, consider getting a second opinion or changing doctors. Be aware that as your child grows, the dosage and even the specific medication may have to be adjusted.
- Cover sharp edges of furniture, perhaps by taping Velcro around them. Move furniture to allow for large empty spaces into which a person could fall safely.
- In the kitchen, make sure sharp knives are not left out.
- Cook on the back burners whenever possible, so a falling person won't knock any pots over.
- Make sure bathroom doors open out, not in, and that there are no locks on the doors so that if your child had a seizure on the floor people can enter to help.
- Remove any electric appliances that are near the bathtub so your child can't inadvertently grab one during a seizure in the tub or shower.
- Installing grab bars in the shower and bathroom might prevent harm by enabling your children to gently drop down if they can tell a seizure is about to occur.
- Educate your other children about the illness and prepare them for witnessing seizures, explaining how long a seizure will usually last, what will happen during and after and what they can do to help. Knowing what to expect can ease a sibling's anxiety.
- Some children misunderstand the cause of seizures and blame themselves for a sibling's epilepsy. Let them know that they are not at fault.
- Siblings may fear that the epilepsy is contagious. Reassure them that this is not true.
- Some feel they will be harmed by the stigma of having a sibling with epilepsy. Encourage them to educate others about epilepsy -- it is a medical condition and not a cause of shame.
- Kids may resent perceived favoring of the sibling with epilepsy. Try to treat all children in the family the same, despite the epilepsy, if at all possible. And make sure to give your other children equal attention.
- Many forms of epilepsy are difficult to detect.
- Consider joining a support group for other parents in your situation, many of whom probably have similar feelings. Check your local hospital or branch of the Epilepsy Foundation to see if there is a support group in your area.
- Children are usually motivated to avoid having seizures at school, so remind your child that going to sleep at a reasonable time will help prevent them.
- In order to get adequate sleep, it may be necessary to take courses that offer less homework or to curtail outside activities that require a lot of time.
- If you need to limit activities, try to let your child continue with one that is in an area of her strength, to help foster self-esteem.
- If your child hasn't had a seizure in over a year, informing and educating her friends and their families may not be necessary. Many children will not want to tell others unless it is absolutely essential. On the other hand, some parents prefer to let the host family know that their child has epilepsy, that it is very unlikely a seizure will occur, and then tell them what to do in case it does happen.
- If your child's seizures are not well controlled yet, you will have to prepare and educate her friends and their families if she goes to their homes.
- If the other family is uncomfortable, or if your child is reluctant to tell others, perhaps you can have the children get together at your house, instead.
- You might refer families to the video "Take Charge of the Facts," which will educate them about the different kinds of seizures, what to expect with each one, and what to do if one occurs.
- If you have the epilepsy under control, tell the school nurse what type your child has, and emphasize that it is under control, as some school nurses become anxious if they haven't encountered a kid with epilepsy before.
- If the epilepsy is not yet under control, you may want to meet with the school nurse before the school year begins. Tell the school nurse:
- what to expect if your child has a seizure
- how long it will last
- what behaviors will occur
- what condition the child will be in after the seizure
- whether your child will be able to continue working, or whether she should be sent home if a seizure occurs
- Whether or not the seizures are controlled, tell the school:
- how to notify you if a seizure happens (by calling immediately or by sending a note home)
- under what circumstances the school should call 911 and/or your doctor
- how to contact your doctor, you, and another relative or close friend who will know how to handle the situation.
- about any changes in your child's condition -- in the kinds of seizures, as well as in the medication being used and possible side effects
- how the school nurse and school psychologist can best help your child deal with the medical and psychological aspects of epilepsy.