Taking care of a child or young adult with a disability is never easy. Challenges
posed by Lennox-Gastaut syndrome (LGS) can be particularly stressful. LGS affects
the family dynamic, touching every relationship – including relationships between
parents, between siblings, and between parents and children.
Because of frequent seizures and many emotional and physical needs, children with
LGS often require constant care from a parent or family member. When getting medical
assistance for your child, it is a good idea to talk to your doctor or a social
worker about programs designed to aid and support families of children with special
needs.
As a parent or caregiver of someone with LGS, you need to be aware of how this disorder
can affect the lives of your entire family. By being aware, you can prepare for
changes and overcome obstacles.
Family life
Having a child who has LGS significantly changes the family routine. Because individuals
with LGS may be restricted from participating in some activities, families could
have a tendency to worry when going out. Time away from home, vacations, and travel
might become a source of stress. Parents may feel concerned about not being able
to get proper care in case of an emergency.
While every individual is different, families living with LGS must remain hopeful.
While every individual is different, families living with LGS must remain hopeful.
Family activities, vacations, even travel are not impossible. As always, it is important
to consult with your doctor about your child's medical needs.
Providing care for a child with LGS around the clock puts a strain on parents. In
fact, parents of children with LGS have a very high divorce rate (up to 75%).7
Being aware of the pressure caused by caring for a loved one may help to identify
and diffuse stressful situations.
Effect on siblings
When one child is sick or has a disability, this can have an impact on the emotional,
behavioral, and physical well-being of healthy siblings.8
Younger children may not understand why their sister or brother is getting so much
attention or why the family cannot take part in certain activities anymore. To help
siblings understand what is happening, some hospitals offer programs that focus
on age-appropriate education.9 These programs can help children better
understand LGS and what it means for their family.
It is important to take time out for all the children, so some do not feel as if
they are being neglected for the needs of one. Remember to celebrate birthdays and
make each child feel special.
As siblings get older, their relationship with their brother or sister with LGS
may change. Some may even be willing to accept responsibility as a caregiver.10
Young adults with LGS
As your child grows into adolescence, you may discover new issues when dealing with
LGS. Seizures may change. But the need for caring parents and caregivers does not
go away.
As children with LGS enter their teens, changes in their bodies may cause changes
in how LGS presents itself. Seizures such as partial, complex partial and secondarily
generalized convulsions may become more common. Among teenagers with
LGS, the most common form of seizure is the complex partial seizure.11
As your child gets older, signs of irritability, aggressiveness or social isolation
may occur. It is important to be aware of these possible symptoms in order to prepare
for adequate care.11
Respite services
Because most babysitters are not familiar with the challenges from living with LGS,
it is common for parents to feel uncomfortable leaving their child in someone else's
care. Often, they will not leave a child with LGS unless another family member is
available. Such responsibility often falls to grandparents or other close relatives.
Taking care of a child with special needs around the clock is a difficult task.
Parents need time away to focus on the needs of other children and each other. It
is important for parents to have time alone, too.
In larger communities, respite care for LGS patients may be available. This care
can provide medical supervision so the family can spend an evening or weekend together.13
Search the Web for "respite care" or "respitality" for services in your area.
References
7 Wheless, James M.D. "Lennox-Gastaut Syndrome: Family Issues" Epilepsy.com.
August 7, 2009. Web. Accessed August 20, 2009. http://www.epilepsy.com/epilepsy/epilepsy_LGS/family_issues
8 Stridsberg, Terri. "New program focuses on needs of siblings of sick
children," Medical News Today. June 13, 2005. Web. Accessed August 25, 2009. http://www.medicalnewstoday.com/articles/26033.php
9 Duttweile, Chelsea "Groups strive to help siblings of sick children,"
The Austin American-Statesmen. August 24, 2009. Web. Accessed August 25, 2009. http://www.statesman.com/news/content/news/stories/local/2009/08/24/0824siblings.html
10 Wheless, James M.D. "Lennox-Gastaut Syndrome: Family Issues" Epilepsy.com.
August 7, 2009. Web. Accessed August 20, 2009. http://www.epilepsy.com/epilepsy/epilepsy_LGS/family_issues
11 Epilepsy Foundation. "Syndromes: Lennox-Gastaut Syndrome." Web.
Accessed August 20, 2009. http://www.epilepsyfoundation.org/answerplace/Medical/seizures/syndromes/lennoxgastaut.cfm
12 Wheless, James M.D. "Lennox-Gastaut Syndrome: Characteristics and
Clinical Manifestations." Epilepsy.com. August 7, 2009. Web. Accessed August 24,
2009. http://www.epilepsy.com/epilepsy/epilepsy_LGS/characteristics
13 Wheless, James M.D. "Lennox-Gastaut Syndrome: Family Issues" Epilepsy.com.
August 7, 2009. Web. Accessed August 20, 2009. http://www.epilepsy.com/epilepsy/epilepsy_LGS/family_issues