Caring 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 learn how to receive the best medical treatment and education for their child.
Parents who are already under a tremendous amount of stress from watching their child have uncontrolled seizures often become frustrated and depressed. This sometimes results in health problems of their own. Sleep deprivation, anxiety, and feelings of guilt in LGS caregivers is not uncommon. Parents often feel overwhelmed with the diagnosis of LGS, such as the indifferent attitudes of others towards their children. Others many not understand the impact LGS has on the entire family.
Caregiving for someone with Lennox-Gastaut syndrome is a family affair which often includes the other 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.
Parents who are already under a tremendous amount of stress from watching their child have uncontrolled seizures often become frustrated and depressed. This sometimes results in health problems of their own. Sleep deprivation, anxiety, and feelings of guilt in LGS caregivers is not uncommon. Parents often feel overwhelmed with the diagnosis of LGS, such as the indifferent attitudes of others towards their children. Others many not understand the impact LGS has on the entire family.
Caregiving for someone with Lennox-Gastaut syndrome is a family affair which often includes the other 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.
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