The following questions were frequently asked during the "comments/questions" portion of the "Adults & LGS" survey,  
conducted by the LGS Foundation in June 2010

Are there "specialists" in LGS?
There are certainly epileptologists across the United States who have a high level of expertise in dealing with Lennox-Gastaut Syndrome. Typically
these neurologists can be found in comprehensive epilepsy centers or hospitals. The LGS Foundation is developing a state-by-state list of
epileptologists who are highly experienced in treating LGS. Please visit
www.lgsfoundation.org for an updated list.

What is the mortality rate or life expectancy of individuals with LGS?
The mortality rate associated with Lennox-Gastaut syndrome ranges from 3 to 7%, with many deaths related to accidents [17]. People with Lennox-
Gastaut syndrome have an increased risk of death compared to their peers of the same age. Although the increased risk is not fully understood, it is
partly due to poorly controlled seizures and injuries from falls.
[18]

Why does my child's SSI get cut off once they turn 18?
When a child becomes an adult at age 18,  different medical and non-medical rules are used to decide if an adult can get SSI disability payments. The
income and resources of family members do not count when deciding whether an adult meets the financial limits for SSI.  If your child is already
receiving SSI payments, the child’s medical condition is reviewed when he or she turns age 18 and the "adult disability rules" are used to decide
whether your 18-year-old is disabled. If your child was not eligible for SSI before his or her 18th birthday because you and your spouse had too much
income or resources, he or she may become eligible for SSI at age 18. For more information, visit the
Social Security Website.

How will the seizures keep changing?
Characteristics of LGS are likely to change in the adult years. As the patient reaches their twenties, only 30-50% maintain the characteristic EEG (slow
spike-wave pattern) and clinical characteristics.
[1]  In 33% of patients with cryptogenic LGS (no underlying cause) and 55% with symptomatic LGS
(known cause), the characteristic LGS features disappeared with age.
[2]  Seizure types often change or decrease in frequency, while behavior
disturbances may persist or change with age.

Are there any specific genetic conditions related to LGS?
Researchers have not identified any genes specific to Lennox-Gastaut syndrome, although the disorder likely has a genetic component. About two-
thirds of cases are described as symptomatic, which means that they are related to an existing neurological problem. In about one-third of cases, the
cause of Lennox-Gastaut syndrome is unknown. When the disorder occurs without an apparent underlying reason, it is described as cryptogenic.
Individuals with cryptogenic Lennox-Gastaut syndrome have no history of epilepsy, neurological problems, or delayed development prior to the onset of
the disorder.
[18]

What causes LGS?
LGS can be caused by a variety of factors including a history of infantile spasms, brain injury associated with birth (asphyxia and low birth weight),
severe brain infections (encephalitis, rubella, and meningitis) or developmental malformations in the brain. In 35% of cases, no cause can be found.

What is a special needs trust?
Special needs trusts are created in your will and act as a receptacle for money earmarked for the child. Typically, special needs trusts are
designed so that none of the money can be used for food, clothing and shelter - all services provided by government programs. However,
the money may be used for amenities that government programs do not provide such as travel, entertainment, and recreation.
[10]

How can I connect with other parents?
The LGS Foundation is working on a fancy new chat forum for parents to interact with one another. In the meantime, please visit our primary
community forum www.lgsfoundation.org/communityforum and register to be part of our interactive community.
Copyright LGS Foundation, 2010
A website from the LGS Foundation