For many children with Lennox-Gastaut syndrome (LGS), diagnosis comes around the
same time that they are expected to start attending school. Unfortunately, the seizures
related to LGS often cause developmental delays – creating problems with placing
the child in schools.
The challenge for you as a parent or caregiver is to balance the physical needs
of your child (therapy and medication) with his or her educational needs. It is
important that you understand what you can expect and what your child is guaranteed
by law.
Developmental delays and LGS
As heartbreaking as it is to see a child in the physical throws of a seizure,
many parents report that their worst fear is seeing their child regress developmentally.
Most children with LGS experience some degree of:
- Impaired intellectual functioning
- Impaired information processing
- Delayed development14
Some children are developmentally normal when LGS begins, but then lose skills.
This loss is sometimes dramatic and associated with uncontrolled seizures. By age
6, most children with this syndrome have some degree of mental retardation.15
The challenge is to balance the physical needs of your child with his or her educational
needs.
Some individuals do not show obvious intellectual impairment, especially if the
seizures begin later in childhood and are not too frequent or severe.
Education
Because everyone with LGS is different, each may have different needs. The frequency
and severity of seizures may impact how much time your child can spend in the classroom.
Open communication between the parents or caregivers and the school board is vital
to avoid confusion or having the child placed in the wrong program.
It is important to have your child evaluated by an education specialist for inclusion
in an early childhood intervention program. Such specialists are often associated
with your local school district. This process will also include an evaluation by
rehabilitation services (physical, occupational, and speech therapy). After evaluating
your child, they can create an individualized education plan (IEP) based on your
child's age and level of function. The IEP will need to be updated every two years.
Federal law mandates that every child with a disability must be provided with an
adequate public education. For more information, visit the
Individuals with Disabilities Education Act (IDEA).
References
14 National Institute of Neurological Disorders and Stroke. "NINDS
Lennox-Gastaut Syndrome Information Page," Accessed August 07, 2009. Web. August
20, 2009. http://www.ninds.nih.gov/disorders/lennoxgastautsyndrome/lennoxgastautsyndrome.htm
15 Epilepsy Foundation. "Epilepsy Syndromes: Lennox-Gastaut Syndrome."
Web. Accessed August 20, 2009. http://www.epilepsyfoundation.org/about/types/syndromes/lg.cfm
16 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
17 LGS Foundation. "Education." Web. Accessed on August 24, 2009. http://www.lgsfoundation.org/education.html
18 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