Lennox-Gastaut Syndrome: A Severe Form of Epilepsy
School, Home & Activities
Severe epilepsy, such as Lennox-Gastaut syndrome (LGS), and some of the medications that are used to treat it can cause serious social and behavior issues. These include aggression or fighting, depression and disobedience. Talk to your doctor about these problems and get help learning how to handle them. While you might not be able to completely stop the problems, there are things you can do to control them. For most children with epilepsy, particularly those with LGS and other severe types, mental health treatment should be a regular part of their care.
Dealing with behavior issues, as well as all of the medical issues that go along with severe epilepsy, affects the whole family. If you have other children, try to involve them, no matter how young they are. Ask them to make a "get well" card, select a special gift or help prepare a favorite meal. Click here for tips on explaining epilepsy to young children. As much as you can, continue to celebrate holidays, plan family outings and even take a little time for yourself. To learn how other families cope, visit the "Parents & Family Support" section of this site.
While taking care of a child with LGS or another type of severe epilepsy can be difficult, for most parents that’s not the hardest part. What’s often more challenging is making sure that their children are well cared for and have as many opportunities as possible when they are not with them. Most parents need to work and at least occasionally have an evening out. Children – if at all possible – need to go to school and visit friends.
Teaching caregivers what to do if your child has a seizure is the first step. Click here for easy-to-follow guidelines. Once you are sure they could handle an emergency, then you need to make sure they understand your child’s needs, issues and abilities. Here are some tools you can use:
- "What Everyone Should Know" is a basic overview of epilepsy.
- Click here for a special overview for babysitters.
It is especially important that teachers understand your child’s needs. You also need to know what your rights are for special services and support. Try to work with your child’s school as partners. Show appreciation for teachers and give them information that could help them work with your child.
LGS and other forms of severe epilepsy will probably affect your child's ability to learn. If it does, you are entitled to special education services. The Individuals with Disabilities Education Act (IDEA) is a federal law that says every child with a disability is entitled to a free, appropriate education in the least restrictive (most "normal") setting possible. Your local Epilepsy Foundation should be able to tell you about laws and services in your state.
All students who receive special education services must receive an IEP (Individualized Education Program). This is a written plan that outlines a student's needs and goals for the school year.
Unfortunately, you will sometimes run into roadblocks in trying to arrange educational services for your child. Even if you have the right to certain services by law, you might need to "advocate" or push for them. The Epilepsy Foundation's Legal Rights of Children with Epilepsy in School & Child Care: An Advocate's Manual can help you do that. As difficult as it is, keep pushing to find the best school for your child and try not to give up.
Read more about epilepsy and education.
With funding from Eisai Inc., the Epilepsy Foundation is currently conducting a national survey of parents of children with LGS. Listen to what some parents said when asked "What is the best advice you could offer to parents of a child newly diagnosed with LGS?"
"Don't give up on the quality of life...communicate with the medical team in order to have your child be the best he or she can be…"
"Educate yourself!! Search the internet, read whatever you can get your hands on concerning epilepsy and never give up fighting for seizure control or reduction."
"Accept your child for who he/she is. Remember that the behavior issues do not define your child and they are not something that they have control over. Patience, diligence, and advocacy for your child are key."
Be sure to check back in October 2009 to see snapshots of survey findings.
