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ABOUT LENNOX-GASTAUT SYNDROME

Lennox-Gastaut Syndrome (LGS) is a rare and severe form of childhood-onset epilepsy that is characterized by frequent seizures, multiple seizure types, a resistance to medication and/or therapies, behavior disturbances, and moderate to severe cognitive dysfunction.
 
Although at this time, there is no cure for Lennox-Gastaut Syndrome (LGS), it is our hope that new treatment options will become available and will help improve the overall outcome and quality of life for all patients living with this disorder.  
 

OVERVIEW

Lennox-Gastaut Syndrome is a rare and severe form of epilepsy which frequently persists into adulthood. When making the transition into this new stage of life for your loved one, you will be faced with new challenges. However, the transitional phase should be a process, not an event. Planning should  begin early to ensure that by young adulthood, you and your child are prepared for the many inevitable changes.

Characteristics of 
LGS are likely to 
change in the adult years,

including seizure types

and frequency.

Characteristics of LGS are likely to change in the adult years, including seizure types and frequency, while behavior disturbances may persist or change with age. As patients move from childhood to adulthood, different therapeutic regimens and care may be required. A patient may need the combined support of services from health care workers, physical and occupational therapists, social workers, psychiatrists and psychologists.   It is not uncommon for adults to continue care under their pediatric neurologist, but in some cases, a transition to an adult neurologist is suggested. Since LGS is a "childhood-onset" epilepsy syndrome, it is very important for adult neurologists to become familiar with the treatment options as well as the evolution of LGS. Caregivers should prepare for this possible change ahead of time.
It is our hope that new treatments will improve the outcome and quality of life for all patients living with LGS. For caregivers and family members who are embarking on this new challenge of transitioning, it is important to understand that you are not alone in this journey. Support, resources, and other information related to adults living with LGS can be found throughout this website.
 
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It is important to

understand that you

are not alone in this 
journey.

 

CHARACTERISTICS

Characteristics of LGS are likely to change in the adult years. As the patient reaches their 20s, 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.

Older children with LGS may experience character problems, acute psychotic episodes, chronic forms of psychosis with aggressiveness, irritability, or social isolation.
[3]  Additionally, many patients with Lennox-Gastaut Syndrome may develop behavioral problems over time including hyperactivity and autistic features.[4]  Long-term follow-up revealed perseverative behavior, (uncontrollable repetition of a particular response or word) slowness and apathy.[5]  Against the background of the complexity of the behavioral problems that may be associated with Lennox–Gastaut Syndrome, it is surprising that large detailed studies of the behavioral aspects and their management are so lacking. Good research in this field is likely to be difficult but is certainly very necessary.

As children progress into adulthood, it is typical for the seizures to continue with different frequency. Tonic seizures are the most common seizure type in adulthood but may become less common during the day and occur most often during sleep.  Since daytime tonic and atonic seizures may decrease or disappear over the years, adult LGS subjects may not retain the same tendency to fall as compared to youth.[6] Other seizure types may change, decrease, or evolve into more complex partial and generalized tonic clonic seizures. Some patients later develop focal temporal lobe epilepsy.

A more favorable outcome is more likely to occur in patients with a later age LGS onset, probably because the brain has already progressed beyond certain critical developmental stages and seizures have a less detrimental impact on intellectual development.
[7]
 
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PLANNING FOR THE FUTURE

If you are the caregiver of an individual with LGS,  you may often find it difficult to juggle the many challenges associated with Lennox-Gastaut Syndrome. However, it is important to familiarize yourself with the future challenges you may face as well as the necessary steps to take in planning for your child's future.  
 
Legal Guardianship:
Regardless of an individual's disability, a parent will lose guardianship over their child once they turn 18 years old.  Even if disabled, an adult is presumed to be competent unless otherwise deemed incompetent after a competency proceeding (a hearing that is held in state probate court to determine if a person is able to handle their own affairs). Therefore, it is necessary for families to familiarize themselves with the various legal options available to protect their child in adulthood. By obtaining legal guardianship once they turn 18, a parent will have the ability to legally handle their assets and make decisions that are in their child's best interest.  In order to obtain guardianship for your child, a "guardianship petition" will need to be filed.  There are different guardianship options available depending on the capabilities of the disabled individual. If the disabled person can not live on their own, manage their own medical and financial needs, or can be easily influenced by others, it is best to apply for full guardianship. If the disabled individual is capable of making some or limited decisions on their own, there may be consideration for limited guardianship, which will limit what you are responsible for and give the disabled individual more control.
 
When beginning the legal guardianship process, you will need copies of medical records and letters from doctors and teachers stating the limitations and capabilities of the individual. An attorney and a financial planner are also recommended, although not required. Laws differ from state to state. Further information about guardianship is usually available on your state's website.
 
Residential Planning:
The topic of residential planning and future care is a topic many parents feel overwhelmed over. However, a time may come when you will no longer be able to take care of your disabled child and will be faced with a dilemma as to who will continue their care. Perhaps you worry whether there are even programs or facilities that will provide enough protection and safety to meet your child's complicatedmedical and emotional needs. These fears are common in parents of adult children with disabilities, and you will find that you are not alone.
 
It is important that you don't assume that siblings or relatives will provide future care.  It may be disappointing to find that your family won't guarantee future care of your child, but it's better to know that ahead of time so you can begin to research other alternatives.  
Local agencies and case managers that oversee services for the disabled can help you understand the different residential options available. Wait-lists for residential placement are often very long, so it is important to make yourself known to your local service system, even if you think you won't need a residential option for another 10 years.[8] Exploring the different residential options, even years before you are prepared to make the transition, will also help you to learn about what is available and how each facility operates.
 
Preparing them for the transition into an adult home may be easier if they are acquainted with the staff and other residents beforehand. Many programs offer orientations or overnight respite in order to allow assimilation before the move. Engaging in social groups such as the Special Olympics or programs for adults with disabilities may also improve socialization and make the transition easier.
 
Future planning also involves encouraging your child to be as independent as possible and continuing to teach them "life" skills. It is extremely important that you feel comfortable with your loved one's residential home, not just for your child's safety, but also for your own peace of mind. For more information on finding a residential facility in your area, go to 
 
Financial Planning:
Long term financial planning is essential in order to ensure that your child will receive benefits entitled to them when you are no longer able to provide care.  Delaying or avoiding the estate planning is a mistake that could put your child at risk. Individuals with special needs who receive Medicaid and other benefits maintain eligibility in the program as long as they do not have more than $2,000 in their own name.  Therefore, leaving an inheritance to an individual who is enrolled in the Medicaid program will inevitably void their eligibility. Creating a special needs trust for your child is one way to avoid endangering the eligibility for government programs.
 
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. [9]
 
COBRA has allowed disabled people under the age of 65 to remain eligible for Medicaid even if they receive an inheritance or other money in excess of $2,000, as long as that gain is placed into a trust. Also known as a "payback", the state is entitled to be paid back the full amount of Medicaid paid to the beneficiary in the event of their death if they leave any money behind. Another solution, one that can be used simultaneously with a special-needs Trust, is an OBRA Supplemental Trust. OBRA stands for the Omnibus Budget Reconciliation Act of 1993, the law that changed the Medicaid rules pertaining to the transfer of assets. Your attorney needs a thorough understanding of OBRA to help you set up this kind of Trust.[10]
SSI benefits will also change when a disabled person turns 18. For more information, please go to the services section.
 
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SERVICES

The services and benefits available for individuals and for families of individuals with disabilities vary from state to state. Listed below are resources and information (within the United States) about some of the most common issues faced during the transition from school to adulthood, with individual independence and self-determination being the ultimate goal for adults living with LGS.  
 
IEP Transitional Services:
Transition services are intended to prepare students to move from school to adulthood. IDEA (individuals with disabilities education act) requires that transition planning start by the time the student reaches age 16 but may begin earlier if the IEP (individualized education plans) team decides it would be appropriate. Post-secondary goals and transitions services are considered in IDEA and include further education, vocational training, independent living, employment, and community participation. These are the areas to be explored by the IEP team to determine which types of transition-related support and services a student with a disability needs. Planning ahead in these areas and developing goals for the student can greatly assist them in preparing for life after high school.
 
SSI & Medicaid:
SSI is a program that pays monthly checks to people with disabilities (as well as the elderly and visually impaired) who have a lower income. Payments are made on the basis of financial need. Social Security Disability Insurance (SSDI) is based on a person's prior work history or their
parents' work history under Social Security.

A child may quality for disability benefits from birth to age 18 under the SSI program.  However, 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.
 
Respite:
Respite care provides short term breaks that relieve stress, restore energy, and promote balance in your life.  Working with family members or friends may be difficult, but there are many respite care options and strategies that you may not be aware of [14]. Using respite allows you to receive support, share the responsibility of caregiving, and maintain your own health.

In-home respite: As a caregiver, you have the option to stay at home with your child while a provider can help with daily tasks. This type of respite can be received occasionally or on a regular basis and can be set up by your caseworker or provided by volunteers.

Residential programs: Residential programs offer temporary care for varying lengths of time. Facilities such as hospitals, group homes and nursing homes can provide emergency or planned overnight stays, giving caregivers 24-hour relief. Although medical insurance generally
does not cover overnight respite, long term care policies may subsidize care.

Independent providers:  Independent providers are generally the least expensive but extensive research may be required in order to find one you trust.  It is important to conduct in-depth interviews, discuss compensation, request references, and be specific about your child's 
needs.

Home care agencies: Home care agencies are often easier to use when looking for a respite provider. Typically, agencies will conduct background checks before hiring personnel. They will also find a provider for you, handle payroll, and provide a replacement in case of sick or
absent personnel. Agencies also handle other issues such as medication, complaints or arbitration.

More information on respite care can be found at 
http://www.helpguide.org/elder/respite_care.htm
 
Day-to-Day Activities:
After finishing school, many opportunities exist for adults with disabilities. Some states have programs through the community college that help young adults learn more independent living skills. It is important to research all of the options available and ask as many questions as 
possible.

Employment: Many disabled adults have skills and abilities that can be used to secure meaningful employment. Please view the section below dedicated to employment to learn more about how to help any individual find a rewarding job.

Day Habilitation Programs: Day habilitation programs provide activities for adults with developmental, emotional and cognitive disabilities. They vary greatly from state to state, but generally focus on providing a group of adults with activities within the community. Some centers 
focus more on living skills while others might choose to focus on social interaction. It’s best to research the facilities available, take tours, and ask lots of questions when making this decision.

Mentorship: Some communities have mentorship programs that match individuals with disabilities one-on-one with a mentor to help them learn life skills (cooking, shopping, transportation, etc.) and to promote social involvement (going to movies, fairs, etc.)  Additionally, some support groups have organized their own mentorship programs with local college students.


Employment:
According to a 1996 study following 102 adult patients with LGS, 12 worked normally (apx 10%) while 36 had part-time or sheltered jobs (35%).[15]
 
Employment is more than just a way to make money. Having a job is an important part of every adult’s life. It provides individuals with structure, meaning, and a sense of accomplishment. Some individuals feel productive working between five and ten hours a week where they can provide valuable services to many different types of establishments.

If an individual is receiving Social Security benefits, it is important that they consider their earnings from employment, as this can sometimes interfere with their benefits. Contact your local Work Incentives Planning Agent (WIPA) to learn more about earnings will affect social security
benefits. 
http://www.ssa.gov/work/WIPA.html

Person-Centered Vocational Guidance is the practice of involving an individual’s family, friends, teachers and providers in the vocational exploration process. By discussing the individual’s interests, abilities and skills, a feasible employment goal can be worked out. 

Vocational Rehabilitation Services: Each state has different vocational rehabilitation services, but the majority will provide employment counseling and assistance in finding a job.  Because state agencies are sometimes overburdened, it is best to go into the vocational rehabilitation process with an employment goal that has already been thought out. Vocational Rehabilitation counselors can link you up with a job developer to find or create that job or help individuals go through additional training in order to develop the skills needed to perform a job.

Sheltered Workshops and Supported Employment: An additional option for individuals with developmental disabilities is supported employment. Goodwill Industries is one example of the many organizations that will provide a supportive work environment catered to an individual’s specific pace. The additional employment services provided are usually funded by social security.


Additional Resources:

 
Self-Directed Employment:
http://www.worksupport.com/documents/proed_self-directed.pdf

State Resources (can be narrowed down by state to state):
http://www.disabilityresource.org/
 
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QUALITY OF LIFE

Lennox-Gastaut Syndrome can impact a patient's quality of life in a number of ways.  Typically, LGS has a major physical impact on a child, with a high frequency of seizures and a high rate of seizure-related injuries. The frequency of seizures, cognitive impairment, behavior disturbances and the side effects of AED's (anti-epileptic drugs) may affect the quality of life of an individual  with Lennox-Gastaut Syndrome.[11] Due to the diversity and complexity of LGS, the effects of LGS on the individual and his/her family require a team of health care professionals to provide the best seizure control, the highest level of function with the least side effects, and the maximum quality of life possible.
 
Accessibility:
As a child transitions to adulthood, their accessibility circumstances may change. An increase in body weight as the individual gets older can present enormous difficulty for the caregiver in assisting the individual with daily tasks such as bathing and transport. For individuals with LGS who require the use of a wheelchair, changes to the accessibility of the home and vehicle may be necessary in order to accommodate the wheelchair. Modifications and remodeling such as installing ramps and bars, widening doors, and moving the living quarters to the ground level are all possibilities and may present a financial challenge for the family.

There are some federal programs available to help fund renovations such as these.  The 
Plan For Achieving Self-Support (PASS) program assists individuals who are receiving SSI (Supplemental Security Income) to set aside resources towards an approved plan for achieving self-support without impacting SSI benefits. This plan will cover home or vehicle modifications through a SSI savings plan. The Federal Housing Administration has two loan guarantee programs. These programs can provide direct loans at below market interest rates, low down payments or financed closing costs and can be used for the purchase or rehabilitation of residence. The program will also loan up to 80% of the repaired value of the home, making it useful for an individual or family that chooses to make accessibility improvements in a new home.

Your local government may also offer programs and assistance in remodeling and renovations for your disabled child, but the requirements differ from 
state to state. Private programs include United Cerebral Palsy (UCP), the Easter Seal SocietyRebuilding Together, and Community Development BlockGrants.


Costs:
Although no studies have specifically evaluated the lifetime costs of a patient with LGS, the estimated lifetime direct costs of the estimated 2.3 million prevalent cases of epilepsy equals apx. $12.5 billion. [13]   Epilepsy specific costs in the United States range from $1,022 to $19, 749. These cost does not include indirect costs such as unemployment or intangible costs such as pain and suffering, distress, and reduced quality of life.[14]  It is not uncommon for a shift to occur in the family's financial situation or structure due to the demands of caring for an adult with LGS.  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 individual with LGS while managing to provide for them financially.
 
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RESEARCH & HOPE

We are working on bringing you up-to-date information on research & hope in Lennox-Gastaut Syndrome. In the meantime, please consider browsing our research page to learn about the LGS Foundation's research grant program and other research opportunities like the REN StudyYour participation is critical to furthering research in Lennox-Gastaut Syndrome - please get involved and spread the word in the LGS community.
 
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FAQ

 
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 many epileptologists across the United States who have a high level of expertise in treating individuals with Lennox-Gastaut Syndrome. Typically these neurologists can be found in comprehensive epilepsy centers with level four designation.  Click on the "find a neurologist" link to browse the National Association of Epilepsy Centers or the American Epilepsy Society Member 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 [16]. 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.[17]

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 20s, 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.


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?
Please visit our support page for ways to connect with other parents and caregivers. 
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SURVEY RESULTS

In June 2010, the LGS Foundation conducted a survey regarding the needs and expectations of caregivers of LGS patients, particularly those of adults living with Lennox-Gastaut Syndrome.
 
Results from survey takers who have an adult child
(over the age of 18) with LGS
 
  • 62% felt they were not educated about the future of their child with LGS

  • 53.3% had a difficult time learning about public services available to their child

  • 54.8% felt they were not prepared in planning for their child's future

  • 80% did not consider group homes/residential options when their child was younger

 

 

Results from survey takers who have an adult child

(under the age of 18) with LGS

 

  • 68.4% are familiar with the process to obtain legal guardianship

  • 53.5% are not aware of the public services available to adults with disabilities

  • 62.5% have considered residential options or group homes for their children in the future

  • 78.9% agree or strongly agree that connecting with a caregiver who has an adult with LGS would be helpful

 

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COMMENTS

from Caregivers

I know nothing about other adults with LGS. I have always been anxious to talk to other parents. My son is 44 years old and I feel like we are alone out there."

"I think it would be important for more 
caregivers of adults or even older teenagers to speak with parents of younger LGS kids so that we can understand more of what to expect."

"I have never heard of LGS until this year. My son finally got the diagnosis and he is 22!"

"A huge concern of mine (I live in Australia) is the transition of care and what will happen when he has to transfer to adult hospital services."

"I'd like more information on the life expectancy or mortality rate and LGS."

"Safety is a concern of mine. Also, job 
assistance information and community 
resources would be helpful."

"I feel very isolated- I don't think people grasp how serious it is. They blame his behaviors on autism. I feel alone."

"Try to start planning at an early age. My son is 29 years old. Ask for help if you need it
!"

 

REFERENCES

1. Ferlazzo, E., Nikaronova, M., Italiano, D., Bureau, M., Dravet, C., Calarese, T., . . . Genton, P. (2010). Lennox–Gastaut syndrome in adulthood: Clinical and EEG features. Epilepsy Research, 89(2-3), 271-277. doi:10.1016/j.eplepsyres.2010.01.012   
2. Oguni, H., Hayashi, K., & Osawa, M. (1996). Long-Term Prognosis of Lennox-Gastaut Syndrome. Epilepsia,37(S3), 44-47. doi:10.1111/j.1528-1157.1996.tb01820.x
3. Cherian, K. A., MD, Glauser, T. A., MD, Morita, D. A., MD, & Stannard, K. M., MD, FRCPC. (2016, July 27). Lennox-Gastaut Syndrome Clinical Presentation (A. Kao MD, Ed.). Retrieved  from http://emedicine.medscape.com/article/1176735-clinical
4. Van Rijckevorsel, Kenou et al. Treatment of LennoxGastaut syndrome: overview and recent findings. Neuropsychiatric Disease and Treatment. 2008: 4(6) 1001-1019.
5. Besag, F. M. C. (2006), Cognitive and Behavioral Outcomes of Epileptic Syndromes: Implications for Education and Clinical Practice. Epilepsia, 47: 119–125. doi:10.1111/j.1528-1167.2006.00709.x
6. Arzimanoglou, Alexis et al. Lennox-Gastaut syndrome: a consensus approach on diagnosis, assessment, management, and trial methodology. The Lancet. 2009: 8(1) 82-93.
7. Camfield, P. R. (2011), Definition and natural history of Lennox-Gastaut syndrome. Epilepsia, 52: 3–9. doi:10.1111/j.1528-1167.2011.03177.x
8. Hartwell-Walker, M. (2016). Future Planning for Your Intellectually Disabled Adult Child | Psych Central. Retrieved from http://psychcentral.com/lib/future-planning-for-your-intellectually-disabled-adult-child/
9. Free Advice Staff (n.d.), Special Needs Trusts: Eligibility for Federal & State Assistance. Retrieved fromhttp://law.freeadvice.com/estate_planning/trusts/special-needs-trust-eligibility-for-government-assistance.htm
10. Godfarb, D. (n.d.), Supplemental Needs Trusts and their Impact on Medicaid and SSI Eligibility Senior Law. Retrieved from http://www.seniorlaw.com/supplemental-needs-trusts-and-their-impact-on-medicaid-and-ssi-eligibility/
11. Gibson, P. A. (2014). Lennox–Gastaut syndrome: Impact on the caregivers and families of patients. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4199842/
12. Begley, C., Famulari, M., Lairson, D., Reynolds, T., Coan, S., Dubinsky, F., . . . Rocca, W. (2000, March). The cost of epilepsy in the United States: An estimate from population-based clinical and survey data. Epilepsia, 41(3), 342-51. Retrieved fromhttp://www.ncbi.nlm.nih.gov/pubmed/10714408
13. Begley, C., & Durgin, T. (n.d.). The direct cost of epilepsy in the United States: A systematic Review of Estimates. Retrieved  from  http://www.ncbi.nlm.nih.gov/pubmed/26216617 PMID: 26216617
14. Wayne, M., MA, & White, M., Ph.D. (2016, June). Respite Care. Retrieved from http://www.helpguide.org/articles/caregiving/respite-care.htm
15. Yagi, K. (1996). Evolution of Lennox-Gastaut Syndrome: A Long-Term Longitudinal Study. Epilepsia, 37(S3), 48-51. doi:10.1111/j.1528-1157.1996.tb01821.x  
16. Abu Saleh T, Stephen L: Lennox gastaut syndrome, review of the literature and a case report. Head Face Med. 2008, 4: 9-10.1186/1746-160X-4-9.
17. Autry AR, Trevathan E, Van Naarden Braun K, Yeargin-Allsopp M. Increased risk of death among children with Lennox-Gastaut syndrome and infantile spasms. J Child Neurol. 2010;25:441–447. [PubMed]

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