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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
Quality of life issues change each day when living with Lennox-Gastaut syndrome. It is typical for
families to prepare themselves for the unexpected while trying to provide the best quality of life for their
child.
The high frequency of seizures can take affect a patient's quality of life. Children are often required to
wear a helmet due to the frequency of atonic seizures. Behavior problems are a typical characteristic of
LGS and can take a toll on the entire family. The side effects of many anti-epileptic drugs can also
reduce the quality of life for a person with LGS.
Individuals with Lennox-Gastaut syndrome are restricted from participating in certain activities such as
some physical sports, driving, and various forms of employment. Changes in living quarters to
accommodate the needs of a person with LGS are common. If an individual is wheelchair bound, an
entire house or apartment may need to be remodeled for better accessibility. Shower bars and other
equipment are often added in bathrooms to assist the individual. These improvements may be
expensive, often leading to additional financial stress for a family.
For the child who is constantly having seizure activity, attending school on a regular basis is usually rare.
In a recent survey conducted by the LGS Foundation, nearly 50% of school-age children no longer attend
school due to uncontrolled seizures or behavior problems, while 21% of those surveyed miss school
50% or more of the time. Day care for a child with disabilities can be very hard to find. Some parents may
rely on another family member to help care for their child, but this is not always possible. Therefore,
parents must be available to care for their children, usually resulting in dramatic changes in a family's
financial situation or structure. In a two-parent household, one parent may work to earn the medical
benefits while the other parent stays home to care for the child. In a single-parent household, it can be
extremely difficult to provide constant care for the child with LGS while managing to provide for them
financially.
As the child with LGS gets older, parents begin to realize the need to plan for their child’s future. Group
homes and adult day habitation programs often become a reality. These decisions can be
overwhelming. However, these programs are intended to encourage independent or assisted living
based on the individual's likes and needs. Group homes are no longer institutions. Instead, they are
comfortable homes staffed by qualified people. It can be a very difficult decision, but parents need to be
aware of the options available for the child's future.
The quality of life for each individual with LGS varies, but many patients share similar experiences, as do
their families.
families to prepare themselves for the unexpected while trying to provide the best quality of life for their
child.
The high frequency of seizures can take affect a patient's quality of life. Children are often required to
wear a helmet due to the frequency of atonic seizures. Behavior problems are a typical characteristic of
LGS and can take a toll on the entire family. The side effects of many anti-epileptic drugs can also
reduce the quality of life for a person with LGS.
Individuals with Lennox-Gastaut syndrome are restricted from participating in certain activities such as
some physical sports, driving, and various forms of employment. Changes in living quarters to
accommodate the needs of a person with LGS are common. If an individual is wheelchair bound, an
entire house or apartment may need to be remodeled for better accessibility. Shower bars and other
equipment are often added in bathrooms to assist the individual. These improvements may be
expensive, often leading to additional financial stress for a family.
For the child who is constantly having seizure activity, attending school on a regular basis is usually rare.
In a recent survey conducted by the LGS Foundation, nearly 50% of school-age children no longer attend
school due to uncontrolled seizures or behavior problems, while 21% of those surveyed miss school
50% or more of the time. Day care for a child with disabilities can be very hard to find. Some parents may
rely on another family member to help care for their child, but this is not always possible. Therefore,
parents must be available to care for their children, usually resulting in dramatic changes in a family's
financial situation or structure. In a two-parent household, one parent may work to earn the medical
benefits while the other parent stays home to care for the child. In a single-parent household, it can be
extremely difficult to provide constant care for the child with LGS while managing to provide for them
financially.
As the child with LGS gets older, parents begin to realize the need to plan for their child’s future. Group
homes and adult day habitation programs often become a reality. These decisions can be
overwhelming. However, these programs are intended to encourage independent or assisted living
based on the individual's likes and needs. Group homes are no longer institutions. Instead, they are
comfortable homes staffed by qualified people. It can be a very difficult decision, but parents need to be
aware of the options available for the child's future.
The quality of life for each individual with LGS varies, but many patients share similar experiences, as do
their families.
