Lennox-Gastaut Syndrome: A Severe Form of Epilepsy
Parents & Family Support
It is hard for parents of children with severe epilepsy not to feel "alone." Severe epilepsy is rare. Less than 4 percent of children with epilepsy have Lennox-Gastaut syndrome (LGS). As we continue to make strides in treating most forms of epilepsy, there is less understanding of how difficult it can be for children with LGS or other severe cases.
Children with LGS miss a lot of school due to seizures and behavior issues. Nearly half end up dropping out. This often means that parents have to miss work, which can cause financial problems. Even if a family can afford it, it can be hard to find a caregiver.
Caring for a child with severe epilepsy is difficult. Many have serious behavior problems. Children who have frequent atonic ("drop attack") seizures that cause them to suddenly collapse, may need to always wear helmets for protection. Some children need wheelchairs to get around, which can mean having to widen doorways and make other costly changes to a house.
Yet by working together, learning what support services are available and advocating (or sometimes "fighting") for them, families can live full, meaningful lives.
By contacting your local Epilepsy Foundation, you can find out about resources and laws in your community, as well as meet other families.
You can "meet" other families online. The Epilepsy Foundation has more than 100 "eCommunities," including ones focusing on parenting topics, behavior issues and research. Participants in the LGS Foundation’s Community Forum also regularly discuss medication, behavior problems, diet and many other concerns.
Remember, no matter how much you learn or how hard you work, there is only so much you, by yourself, can do to help your child. While every family's situation is different and each child's condition unique, after a while just about all parents recommend the same thing: "Build a support network. Do not try to do it alone!"
Lastly, but perhaps most important, take care of yourself. You can only help and care for your child if you are emotionally and physically healthy. Again, remember that while it may sometimes feel that way, you are not alone. According to the National Family Caregivers Association, more than 50 million Americans care for loved ones who are disabled or suffering from a chronic illness.
