For many children with Lennox-Gastaut syndrome (LGS), diagnosis comes around the same time that they are expected to start attending school. As a parent or caregiver, you will have to understand the physical and emotional needs and limitations of your child, and know what is available to you so your child can receive the best education possible.
As heartbreaking as it is to see children in the physical throes of a seizure, it may also worry parents that their child may face developmental delays. Most children with LGS have some delay in developmental experience as well as problems with intellectual function and processing information.1 With LGS, some children have no developmental problems at first. But with time, these problems may begin to appear.2
Learn what is available to you so your child can receive the best education possible.
Every child with LGS is different and will have different needs. There are many options and services available to ensure that children with special needs still receive an education. Your child may be evaluated by a team of professionals that may include his or her teachers, a psychologist, a speech and language specialist, and an occupational therapist.3 You can also seek out non-school specialists,3 such as a neuropsychologist, to evaluate your child’s intellectual functioning and advise on a plan for education.4
As a result of these evaluations, an individualized education plan (IEP) should be developed if the child is eligible.5 The IEP will include:
By law, public schools must provide services to ensure children with a disability have a fair chance at an education.5 To learn more about the Individuals with Disabilities Education Act (IDEA), visit http://idea.ed.gov.
There will be a lot of people involved in assessing and providing an education for your child. Remember that you also play a vital role in this process. You are the best advocate for your child. Learn more about your child’s rights—both nationwide and within your state.5 Finally, stay a part of the process. Open communication between you, the teachers, other school staff, your healthcare team, and even the other students can help avoid confusion and give your child the best education possible.5
As your child gets older, his or her needs at school may change. You may find that your child’s seizures and behavior change as well.
- 1. NINDS Lennox-Gastaut syndrome information page. National Institute of Neurological Disorders and Stroke Web site. https://www.ninds.nih.gov/Disorders/All-Disorders/Lennox-Gastaut-Syndrome-Information-Page. Updated March 2019. Accessed October 21, 2019.
- 2. Shafer PO, Kiriakopoulos E, Sirven JI. LGS: characteristics. Epilepsy Foundation Web site. https://www.epilepsy.com/learn/types-epilepsy-syndromes/lennox-gastaut-syndrome-lgs/lgs-characteristics. Updated November 2014. Accessed November 27, 2019.
- 3. Kids Health. Individualized education programs (IEPs). Kidshealth.org. https://kidshealth.org/en/parents/iep.html?view=ptr&WT.ac=p-ptr. Reviewed September 2016. Accessed December 1, 2019.
- 4. Cherian KA. Lennox-Gastaut syndrome treatment and management. eMedicine Web site. http://emedicine.medscape.com/article/1176735-treatment. Updated January 26, 2012. Accessed December 1, 2019.
- 5. Carr C. Key to the classroom. Neurology Now. 2007;3(4):31-35.
- 6. Office of Special Education Programs, US Department of Education. IDEA Regulations: Individualized Education Program (IEP). Washington, DC: US Department of Education; 2006.