Tips for Parents of Children with Epilepsy

Sometimes it seems as if there are only two types of parents with young children: parents who have a child with epilepsy, and parents who worry that their child will someday develop a seizure disorder. And now with the recent tragic death of John Travolta’s teenage son, Jett, in an apparent seizure related incident, epilepsy is back in the popular media.

News organizations learned long ago that fear is attention-grabbing, and that few words can elicit more fear in parents than “seizure” and “epilepsy.” So, not surprisingly, whenever the two words “celebrity” and “seizure” can fit into a single headline, it will be the lead story on the evening news. Hearing or seeing such stories can lead to increased anxiety in parents – both of “healthy” kids and those who experience seizures – and their families.

First thing to note, then, is this: Deaths caused by seizures are rare. This is why they make the news to begin with. Sudden Unexplained Death in Epilepsy (SUDEP) accounts for a relatively small percentage of fatalities among those with seizure disorders. And SUDEP is extremely rare in young children, and children with early onset seizures.

Second, while occasional injuries are the more likely outcome, many are preventable. With some uncommon common sense and a dash of vigilance many injuries involving seizures can be prevented, or minimized. For instance:

• If a child is having a seizure near a coffee table with sharp edges, the table is probably the bigger problem, not the child. So, move the table.
• If a child is prone to seizures, it is prudent not to let him or her swim or ski alone. Then again, it is prudent not to let any child swim or ski alone. (And you shouldn’t either!)
• If a child has a seizure disorder, knowing basic first-aid may come in handy. Then again, it is a good idea for every parent to know basic first aid.
• You can find some more good safety tips at epilepsy.com

Remember: Immediately after a seizure, make sure the child is lying on her side and is able to breathe normally. Don’t worry; she probably won’t swallow her tongue.

Third, let your child be your teacher. Children can be remarkably resilient, especially when their parents encourage them to be. In the early onset phase of epilepsy it is important to give them enough freedom to negotiate their way through this new territory. By paying attention to what your child needs from you, rather than trying to anticipate every possible need your child might have, he will get a clear message from you that he can manage much of the time on his own.

Remember: Hovering is not helpful. Be watchful without being overly intrusive.

Fourth, have a plan. Often more than having seizures, children are anxious about other people – especially other children – seeing them have seizures. Letting your child’s teacher and principal know about the seizures as soon as possible is essential. Beyond that, it may be useful to have your child work out some sort of “secret code” alerting the teacher that a seizure is about to occur. (Many children sense an “aura” and know when a seizure is imminent.) Having a preset plan in place allowing the child an exit strategy, accompanied by a responsible adult, may dramatically reduce this anxiety about being embarrassed in front of classmates and friends.

Remember: Seizures don’t change everything about being a kid. Looking bad is still a big deal.

Fifth, seizures are emotionally taxing on everyone in the family. Epilepsy affects the entire family. Be sure to check in regularly with your other children, and your extended family to make sure that this experience is not unduly draining. Also, as the parents, it is important that you pace yourselves, take care of your own relationships, and seek help and guidance when you need it. This might include support such as asking a trusted friend to come along to a visit to the neurologist’s office (taking along a mini-recorder would help too), or seeking professional help when, and if, the anxiety begins to feel overwhelming.

Remember: If you are beginning to feel overwhelmed, you probably already are, and have been for a while. Get help just before you think you need it.

Sixth, reach out and find out. Information really is power. There are many parents in your community who have been along this path before. They are available; they have the wisdom of personal experience, and they are eager to help. Contact your Local Epilepsy Foundation chapter for information about parent support groups near you.

Remember: You are not alone. You are surrounded by kindness and compassion, if you know where to look.

If you have a child with seizure disorder, you probably already know what to do – love and enjoy your child for the wonderful being that he/she is. If your child does not have seizures, well, do the same. As parents, we are more than our fears. Just as our children are more than their diagnosis. Hafiz, the fourteenth century Sufi poet, said it best: “Fear is the cheapest room in the house. I’d rather see you in better living conditions.”

Edd Conboy, MS, MFT is a staff therapist Council for Relationships’ University City office. Request an appointment today.