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About LGS
Types of Seizures
Treatments
Living with LGS
What to Expect
Caregiving
Quality of Life
Services
Education
Community Forum
Donate
Resources
Media
Events
Stories
Caregiving for a child with Lennox-Gastaut syndrome is different for everyone, as each
child with LGS has needs that are unique. Parents must become advocates and navigate
the “system” to get the best medical treatment and education for their child. The "system",
as many LGS families describe it, can include health care, education, and social settings.
Examples of these include insurance companies denying a claim too quickly or well-
meaning teachers whom are not given the necessary resources to provide the most
appropriate education.
Parents who are already under a tremendous amount of stress watching their child have
uncontrolled seizures are also frustrated by the system. This sometimes results in health
problems of their own. Sleep deprivation, depression, and feelings of guilt in LGS
caregivers is not uncommon. Parents often feel overwhelmed with the unnecessary stress,
such as the indifferent attitudes of others towards their children. Because LGS is so rare,
others do not understand the impact it has on the entire family. People are still under the
impression that epilepsy can be easily controlled if medication is taken or that behavior
issues are due to poor parenting skills.
Caregiving for someone with Lennox-Gastaut syndrome is a family affair, including the
healthy siblings. They are affected too, spending holidays and birthdays in the hospital
visiting their ill sibling, wondering and worrying about why their brother or sister is not
getting better. They miss their parents because they are at the hospital. Vacation plans
are changed at the last minute to accommodate a seizure. Sleep is interrupted, social
activities are put on hold. As much as parents try to keep things balanced, the child with
LGS almost always comes first.
Please click here to post your experiences or read about others in our LGS forum.
Further Resources:
www.thefamilycaregiver.org
www.nfcacares.org
"Epilepsy and Guilt" podcast
child with LGS has needs that are unique. Parents must become advocates and navigate
the “system” to get the best medical treatment and education for their child. The "system",
as many LGS families describe it, can include health care, education, and social settings.
Examples of these include insurance companies denying a claim too quickly or well-
meaning teachers whom are not given the necessary resources to provide the most
appropriate education.
Parents who are already under a tremendous amount of stress watching their child have
uncontrolled seizures are also frustrated by the system. This sometimes results in health
problems of their own. Sleep deprivation, depression, and feelings of guilt in LGS
caregivers is not uncommon. Parents often feel overwhelmed with the unnecessary stress,
such as the indifferent attitudes of others towards their children. Because LGS is so rare,
others do not understand the impact it has on the entire family. People are still under the
impression that epilepsy can be easily controlled if medication is taken or that behavior
issues are due to poor parenting skills.
Caregiving for someone with Lennox-Gastaut syndrome is a family affair, including the
healthy siblings. They are affected too, spending holidays and birthdays in the hospital
visiting their ill sibling, wondering and worrying about why their brother or sister is not
getting better. They miss their parents because they are at the hospital. Vacation plans
are changed at the last minute to accommodate a seizure. Sleep is interrupted, social
activities are put on hold. As much as parents try to keep things balanced, the child with
LGS almost always comes first.
Please click here to post your experiences or read about others in our LGS forum.
Further Resources:
www.thefamilycaregiver.org
www.nfcacares.org
"Epilepsy and Guilt" podcast