Ask the Expert: When Mom Has Epilepsy -- Issues in the Family

Introduction

Being a mother with epilepsy can raise concerns about safely raising a family and caring for children. There is no reason to think that having epilepsy precludes being a loving and nurturing caregiver. But there are precautions that may need to be taken by the mother with seizures.

If seizures cause a loss of consciousness, there are safety measures that will need to be employed by a mother with epilepsy. Feeding, bathing and diapering the baby are rituals that may need to undergo slight technique modifications to protect mother and child.

Toddlers can present a challenge for a mother with epilepsy. Active 2- or 3-year-olds can be hard for any parent to keep up with. There are things a woman with epilepsy can do to keep a young child from wandering off if she becomes confused or unaware during a seizure.

As children get older, they may have questions about epilepsy and seizures. Once the condition has been explained to them in terms they can understand, children can start to learn what they can do to help keep themselves and their mother safe when seizures occur.

Epilepsy affects women in different ways. Some parents will need to make several changes in their lives to provide a safe environment for the child. Others will need to make very few changes. Careful consideration of a woman’s seizure pattern will help assess the specific risks she may face and lead her to the right lifestyle adaptations for her and her family.

My neighbor knows I have epilepsy and she won’t let her daughter come over to play because she thinks I might have a seizure and the girls would be unsupervised. They’re both six years old. Is this reasonable, do you think? How should I handle it?

Your question is one that many parents worry about, but are reluctant to ask. Having seizures can pose challenges for you, your daughter and her friends. There is no one answer to this, and how you handle it in part will depend on how the epilepsy is affecting you. For example, if your seizures are well controlled or do not affect your awareness or consciousness, there is no reason why you can’t supervise the children just like a parent without epilepsy. In this scenario, the neighbor’s fear or misconceptions about epilepsy are getting in the way. Talking with the neighbor about what epilepsy is, what it is not, and how it doesn’t interfere with your ability to watch and play with the kids is needed.

On the other hand, if you are having frequent seizures, or the seizures are affecting your awareness and ability to care for yourself or others, then reasonable questions need to be asked and ways to overcome the dilemmas considered. For example, are there specific times that your seizures occur, or triggers that you can avoid? If so, can you arrange play dates for your child at non-high-risk times when you are not exposed to these triggers? Does it make sense to arrange play dates when your spouse or a friend is also around? Arranging playtimes with others or joining a parent group may offer chances for both you and your daughter to socialize in safe ways.

You will also want to teach your daughter what to do in case you have a seizure. Does she have an easy way to contact another adult? Children as young as 3 or 4 years old can be taught to use the phone, a paging system, or hit a speed dial on the phone to call another adult. And they should know how to dial 911 in case of any emergency. Think about these options with your spouse or partner first and talk with your daughter to see how comfortable she feels. Then as a family you can come up with the strategies that make the most sense for you.

My son is eight and he worries about me all the time. The seizures scare him and he’s just anxious about it. I’m a single mom, and he’s an only child. How can I help him deal with this and not be so uptight all the time?

First of all, remember that children at this age are at a critical point – they are trying to develop their own sense of self, but are not really ready to be independent. They are dependent on parents to feel secure and safe. It is not unusual for children of parents with seizures to worry; particularly if they have witnessed seizures that may have been scary for them or which they didn’t understand. If he has seen you go to the hospital after a seizure, the fear may be more intense – maybe he fears that you will leave him, that you are very ill, or even that you may die. Since you are a single parent, the worry may be more intense for him. Unfortunately, children often have trouble putting their worries into words.

So the first thing is to find a counselor for your son. Maybe the school counselor could meet with him and find out how he is feeling? Your primary care physician or neurologist may also be able to recommend counselors skilled in working with children. If you have a social worker involved in care of your epilepsy, talk to him or her and ask for help. At the minimum, the social worker can help you with ways to get help for your son. You may also find that your son is picking up on your own worries or fears and getting an outlet for yourself may make it easier on him. Remember that epilepsy is a family affair – while you are experiencing the seizures, all your family and friends are living with it, too. Thus, taking a family approach is critical to successful living for everyone.

I have complex partial seizures, and I do things that make no sense when I’m having one or just afterwards. I’ll do things like put a photograph album in the refrigerator without knowing I’m doing it or try to spread butter on knitting. I’m scared that I will somehow do something crazy if I have a seizure when I’m holding my baby. I’m six months pregnant and I have a supportive family but I’m scared about this.

Your question is a very common one and I can certainly understand your concerns. You have taken the first step in addressing this – critically looking at what risks or problem areas you may face as a parent, and seeking ways to minimize these risks. First, make sure that you are working with your doctor and other members of your health care team to get the best seizure control possible. Have you explored all options or are there other things you can try after the baby is born to improve seizure control?

In the meantime, use your supports to help you work out a ‘safety management plan.’ Can you sit on the couch or in the middle of the bed when you are holding the baby so no one falls? Do you have a playpen so you can put the baby in a safe place if you are not feeling well? Have you child-proofed your house? Every expectant parent should do this, but a woman with epilepsy may need to look at her environment a bit closer. I encourage women to get down on the floor and look around – what would happen if you lost awareness of your surroundings if even for a few moments or minutes and the baby was on the floor? Make sure you have all the necessary safety features, particularly gates to keep babies out of bathrooms, kitchens and away from doors and stairs. And keep sharp or breakable objects out of reach.

If you are worried about having a seizure while holding the baby, and particularly if you have frequent seizures, is there a way to have someone around, particularly in the early weeks after the baby is born? Sometimes family members can adjust schedules to help out, and you can set up times for friends to visit when family are not around. If you can afford it financially, you may be able to hire help in the home or take your baby to daycare when your spouse or partner is not home. Then you can use this time to get your own rest and be less worried about safety concerns when alone. Planning how to safely care for children is as important as planning the pregnancy, so ask your doctor if there is a nurse or social worker in the practice who can help with these issues. And remember, a large part of being a parent and of coping with epilepsy is to take one day at a time; have courage and don’t be afraid of asking for help.

Is it okay to wear a baby carrier sling (I don’t know the right word for them) if you have seizures? I don’t fall with my seizures, but my husband doesn’t think I should risk it.

This is one of the questions where you need to weigh the benefits of using the baby carrier with the potential risks should you have a seizure with the baby in it. Even if you don’t fall during a seizure, you could lose your balance, or trip with the baby in it – maybe during the after-effects of a seizure or due to side effects of your seizure medication! If your husband is worried about you using this, then you need to think carefully if the added stress and conflict is worth it. You may find that using strollers is easier, safer and more agreeable to everyone. Nowadays, strollers can be made quite small and you can even use them in the house to go from one area to another.

I want to breastfeed my baby, but a lot of people have told me it wouldn’t be safe if I had a seizure while I was breastfeeding. Is there any way to do it safely?

While nothing in life is ever perfectly safe, feeding and holding babies is one area that raises concerns for many people. However, you can make feeding time a lot easier by sitting on a couch, in the middle of a bed or on the floor with cushions around you. In this way, both you and the baby would be safer should you have a seizure. Or if you are having frequent seizures, you may want to pump your breast milk and feed your baby out of a bottle with the baby-sitting in a baby carrier when you are alone and breastfeed when someone else is around.

I have just been told that I have seizures. I am a mom and do not know how to talk to my family about this.

Telling others about your seizures can be hard, particularly when you are newly diagnosed. First, make sure you have time to find out about seizures and what to do should one occur. Ask your doctor if there is a nurse or social worker you can meet with to learn more about what to do and how to talk with your family. Also, see if there is an Epilepsy Foundation affiliate in your area. They can help you get the information you need and connect you with other people with seizures.

Telling family members about seizures is a very important step. Your immediate family, including children, should know what a seizure is, what to do, and what not to do. They may have many questions, fears, or misperceptions that will need to be addressed along the way. Usually, people are more fearful or worried about what they don’t know, than what they do know, and you may find that your family will be relieved to learn what is going on, especially what they can do to help. If you have children of different ages, you and your husband will need to think about how much information each one can handle in the beginning. And as your children grow, reassess what they know and how they feel.

The key part of talking with family members is to do so in a way that eases their concerns and addresses the practical, safety issues, but doesn’t encourage them to overprotect you. Sometimes well-meaning spouses or even children end up “protecting” the person with seizures to the point that roles and relationships can get very mixed up. If you find this happening, ask for help from a professional early on – it will help you keep your independence and sanity, and help your family step back, too! Remember, epilepsy is a family affair. While it may feel scary in the beginning and at different times during your life, you can learn ways to cope with these ups and downs and continue to live an active and productive life.

This event was posted in October 2003.