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Living with LGS

 

 

 

 

Managing Lennox-Gastaut Syndrome goes beyond seizures. Quality of life, education, caregiving, safety, and other major components of every day life need to be taken into account when your loved one is living with LGS. Learn more about some of these aspects here. 

 
EDUCATION
Navigating your way through the educational system may be difficult when you have a loved one with LGS. However, there are laws in the United States that protect the rights of a disabled student. The Individuals with Disabilities Education Act (IDEA) states that every child with a disability must be provided with an adequate public education. IDEA mandates that all children will receive a public education regardless of the severity of their disability. School systems do not have the option to decide whether or not to give a disabled student the appropriate services. An Individual Education Plan (IEP) should be given to every special education student in the U.S. The IEP lists the goals, transition services, and plans for the student. These are legal documents and are provided for teachers and staff to follow. IEPs are reviewed annually and can be amended during a CSE hearing. A CSE hearing is a meeting in which the teachers, parents, special education director, nurse (if applicable), or anyone else involved in the child’s education, will meet to make changes to the IEP if services are not being administered or if services need to be reduced.
 
IDEA also states that parents or legal guardians who feel their child is not receiving the appropriate services are entitled to take legal action with the school in order to get the right services. This can include incorrect classroom placement, failure to provide adequate staff for the child, or failure to provide services such as PT, OT, speech, etc. A parent or guardian should know that these federal laws exist so the child does not get mistreated or misplaced. If you feel that the school is not providing adequate services, you can take legal action or hire an advocate for your child.
 
It is very important for there to be communication between the parents and the school board. Failure to communicate properly can result in confusion and misplacement. As a parent of a child with LGS, it is important for you to inform the teachers and administration of the characteristics of LGS. A helpful way to make sure teachers and staff are informed can be by downloading our "Understanding LGS Infographic".  
 
The Americans with Disabilities Act (ADA) prohibits discrimination of a person with a disability in state and local governments, public areas, and businesses that serve the general public. This also includes discrimination by child care programs that are run by private businesses or are funded by a government agency. One type of exception would be religious organizations. For more information on education, visit: www.wrightslaw.com
 
 
 

QUALITY OF LIFE

 

Quality of life of circumstances may change each day when living with Lennox-Gastaut Syndrome.  It is essential 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 may affect the patient's quality of life. Children are often required to wear a helmet due to the frequency of atonic seizures. Behavior disturbances are typical of LGS and can take a toll on the entire family. The side effects of many epileptic drugs can also reduce the quality of life for a person with LGS. Individuals with Lennox-Gastaut Syndrome may be restricted from participating in certain activities such as  physical sports, driving, and various forms of employment. Changes in living quarters to accomodate a person living with LGS are common. If an individual uses a wheelchair, 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, leading to additional financial stress for a family.

 

For the child who is regularly experiencing seizures, attending school on a regular basis may be difficult. In a 2009 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. Daycare for a child with disabilities can be very difficult to find. Some parents may rely on another family member to help care for the 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 when the other 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 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 should be aware of the options available for the child's future.  More information on transitioning into adulthood for patients with LGS, as well as an array of services can be found at www.adultsandlgs.org.

 

The quality of life for each individual with LGS varies, but many patients share similiar experiences, as do their families. A 2009 publication in the journal Seizure clearly demonstrates the impact of Lennox-Gastaut Syndrome on Health-Related Quality of Life for caregivers and individuals with LGS. To read more, click here.

 

 

 

CAREGIVING

 

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.

 

 

SAFETY

 

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.
Taking the appropriate safety precautions can help prevent injuries from occurring during a seizure and can minimize the chances of seizure-related accidents.

Safety & Seizure-related accidents:  This comprehensive powerpoint, presented by Dan Friedman, MD, of NYU Langone Epilepsy Center, outlines seizure safety and seizure risk. You may also 
download the LGS Foundation's seizure safety poster here or order small posters free of charge from our LGS materials page.

Safety Equipment: Equipment such as helmets, monitors and alerts are helpful in preventing injuries as well as detecting and alerting caregivers when a seizure occurs. A list of providers are listed here.

 

SUDEP & Mortality: Individuals with LGS are at a higher risk of SUDEP (Sudden Unexpected Death in Epilepsy). SUDEP is defined as a sudden and unexpected non-traumatic or non-drowning-related death in a patient with epilepsy that may or may not be due to a recent seizure.1 Risk factors most consistently associated with SUDEP are: seizures that can’t be controlled, treatment with multiple anticonvulsant drugs, and having long standing chronic epilepsy. Other factors include generalized tonic-clonic seizures, nocturnal seizures, developmental delays, stopping the use of anticonvulsant medicine abruptly, and onset of epilepsy at a young age.

 

Helpful Resources:

PAME (People Against Mortality in Epilepsy) Meeting Summary

CURE Epilepsy SUDEP Section 

Seizure Safety & Seizure Risk: From First Aid to SUDEP

LGS Foundation Resources Page

LGS Foundation Bereavement Page

 

 

 

References:

1.  Glauser TA, Morita DA. Lennox-Gastaut syndrome. eMedicine web site. Available at: http://www.emedicine.com/neuro/topic186.htm. Accessed November 7, 2003.

2. CURE Epilepsy Website. http://www.cureepilepsy.org/research/sudep-faq.asp. Accessed 3.1.15