Lennox-Gastaut Syndrome in Adulthood
Christina is the Founder and President of the LGS Foundation. Her brother was diagnosed with LGS when he was 3. Christina brings her knowledge of LGS and experience of watching her own brother transition from childhood to adolescence and adulthood. Christina is a paid consultant of Eisai Inc.
Although it may be difficult to think about your child’s adult care needs when he or she is still young, it’s important to prepare yourself for a number of possible changes as your child gets older. This preparation or transition is a process, not an event. You should start early and prepare yourself for possible changes in these key areas:
- How Lennox-Gastaut syndrome may affect your child later in life
- Legal guardianship
- Financial planning
- Living arrangements
How Lennox-Gastaut syndrome may affect your child later in life
Characteristics of LGS are likely to change as your child gets older. These include the types of seizures your child experiences and how often they occur. As patients reach their twenties, only 30% to 50% maintain the characteristic EEG1 (slow spike-wave pattern) found in children with LGS. In addition, your child's cognitive impairment may change over time.2
Also, tonic seizures may become less common during the day and occur more often during sleep.1 Other seizure types may also change, decrease, or evolve into more complex partial and generalized tonic-clonic seizures.3
In addition, your child may experience behavior disturbances and other problems.4
Of course, these changes may require your child to see a doctor who specializes in adult care.
It’s important to prepare yourself for a number of possible changes as your child gets older. This preparation or transition is a process, not an event.
Did you know that when your child turns 18 years old, you lose legal guardianship, regardless of his or her disability?
Luckily, there are things you can do to prevent this. You can file a guardianship petition prior to your child’s 18th birthday. Once granted, this will give you the legal authority to continue to handle your child’s affairs. To file a guardianship petition, you will need copies of your child’s medical records and letters from your healthcare team stating your child’s limitations and capabilities.
Information about guardianship options is available through your local disability rights agency and on your state’s Web site.
Thinking about your child’s financial future as an adult is also critical. Delaying or avoiding such planning could put your child in jeopardy later. The Patient Protection and Affordable Care Act now offers many insurance options for people with pre-existing conditions. This includes LGS. However, if you cannot afford insurance, Medicaid may be able to help. Here are some things to keep in mind5:
- Determine what financial asset requirements apply under your specific state's Medicaid program. If your child or loved one receives Medicaid or other benefits, make sure the money in his or her name does not exceed the maximum dollar amount set by your state so that he or she remains eligible for benefits
- To prevent potential Medicaid eligibility issues, think about creating a special needs trust. This is one way to avoid endangering your child’s eligibility and is a safe place to leave money to your child
- Money in a special needs trust cannot be used for food, clothing, and shelter, which are all services the government provides through various programs
- Money in a special needs trust can be used for amenities not covered in government programs. These include recreation, entertainment, and travel
As a parent or caregiver, you may find the idea of planning for a group home or residential facility overwhelming and unnecessary. However, it is important to have a plan in place ahead of time in case you are no longer able to care for your child as you get older.
Local agencies and service coordinators can help you find appropriate residential options for your child. It is wise to make yourself known to your local service system early. Wait lists for residential placement can be years long, so the sooner you are on the list, the better prepared you will be when you need to find a place for your adult child to live.
How to get started
For concerns about your child’s legal, financial, and living arrangements, contact a special needs attorney. He or she can help you with many of the issues outlined above including special needs trusts, special education advocacy, public benefits, guardianship, and estate/financial planning.
Ask your service coordinator if he or she knows of an attorney who specializes in these matters. If you belong to a special needs support group or are a member of the LGS Foundation, other families may be able to provide referrals for an attorney as well.
Remember, it’s important to start planning for your child’s adult life while it is still years away. It may seem like one or several more things you need to do on top of everything else. But if you plan for your child’s transitions now, you will have more options open to you, and you won’t need to worry about it later when it may be more difficult.
- 1. Yagi K. Evolution of Lennox-Gastaut syndrome: a long-term longitudinal study. Epilepsia. 1996;37(suppl 3):48-51.
Crumrine PK. Lennox-Gastaut syndrome. J Child Neurol. 2002;17(suppl 1):S70-75.
- 3. LGS seizure types. Epilepsy.com. http://www.epilepsy.com/information/lennox-gastaut-syndrome/lgs-seizure-types. Accessed April 21, 2014.
- 4. Besag FM. Behavioral aspects of pediatric epilepsy syndromes. Epilepsy Behav. 2004;5 (suppl 1):3-13.
- 5. LGS Foundation. Adults and LGS. LGS Foundation Web site. http://www.lgsfoundation.org/adultsandlgs. Accessed September 13, 2016.