Your healthcare team

Finding the right people to help

An important step in living with Lennox-Gastaut syndrome (LGS) is finding the right professionals for your loved one's needs, as well as your own. Several kinds of doctors and therapists will be involved in your child’s care, and you may even be referred to a specialized epilepsy center.1

These centers can often be found at local hospitals, large medical centers, and medical universities.2 But if you don't live near a center, the staff at a hospital may be able to do an evaluation and then work with your child's regular team of doctors.1,3

These are some of the people that may be involved in your child’s treatment and overall care. Keep in mind that you do not have to consult with all of them, and that your child’s treatment plan may require other professionals not outlined here.

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Pediatrician/Physician

Pediatrician/Physician

When your child first had a seizure, you probably went to the emergency room or a primary care doctor.3 The doctor may have made a general diagnosis of epilepsy, and/or recommended that you take your child to a neurologist.1 When treating LGS, the primary doctor may still be a part of your child’s healthcare team.1

Neurologist

Neurologist

Neurologists are doctors who specialize in the brain and nervous system.4 They are trained to diagnose, treat, and manage a variety of disorders.4 Neurologists do not perform surgery.4 A neurologist may have diagnosed your child's epilepsy and/or LGS. A pediatric neurologist specializes in children's brain disorders.5

Neurosurgeon

Neurosurgeon

A neurosurgeon specializes in surgery of the brain and central nervous system. He or she would perform surgery if that is the type of treatment your loved one needed.6

Neuropsychologist

Neuropsychologist

Neuropsychologists can assess intellectual function and educational needs.6 If your child has behavioral problems that may require medication, your neuropsychologist can work with and recommend a pediatric psychiatrist or a neuropsychiatrist.6,7

Dietitian

Dietitian

If your healthcare provider recommends that you treat your child's LGS with a specialized diet called the ketogenic diet, a dietitian may help plan meals.6 Your doctor and a dietitian will work together to start this treatment and will closely monitor your child as he or she starts this diet.6
Here's a video about the potential benefits of the ketogenic diet.

Occupational therapist

Occupational therapist

In general, occupational therapists help people live better with an illness, injury, or disability. An occupational therapist will see what daily functions your child can do, and may be able to help improve them.8 The therapist can also recommend equipment and ways to modify your home, and give advice to your family and other caregivers.8

Remember that you and your family are the most important part of your child's care. You don't even need to wait for an occupational therapist—there are many things you can do already to help prevent your child from being injured.

Learn how parents of a child with LGS found the right doctors

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References:

  • 1. Frequently asked questions. Centers for Disease Control and Prevention Web site. https://www.cdc.gov/epilepsy/about/faq.htm?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Fepilepsy%2Fbasics%2Ffaq.htm. Last reviewed January 2019. Accessed November 20, 2019.
  • 2. National Association for Epilepsy Centers (NAEC). All Epilepsy Center Locations. NAEC Web site. https://www.naec-epilepsy.org/about-epilepsy-centers/what-is-an-epilepsy-center/. Accessed December 1, 2019.
  • 3. Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy Centers. Minneapolis, MN: National Association of Epilepsy Centers; January 12, 2010.
  • 4. American Academy of Neurology (AAN). What is a neurologist? AAN Web site. https://www.aan.com/tools-and-resources/medical-students/careers-in-neurology/what-is-a-neurologist/. Accessed December 1, 2019.
  • 5. Sirven JI, Shafer PO. Your medical team. Epilepsy Foundation Web site. https://www.epilepsy.com/living-epilepsy/parents-and-caregivers/about-kids/your-medical-team. Updated March 19, 2014. Accessed December 1, 2019.
  • 6. Cherian KA. Lennox-Gastaut syndrome treatment and management. eMedicine Web site. http://emedicine.medscape.com/article/1176735-treatment. Updated November 9, 2018. Accessed December 1, 2019.
  • 7. Salpekar J. The developmental path for a pediatric neuropsychiatry clinical program. J Neuropsychiatry Clin Neurosci. 2018;30(3):180-182.
  • 8. OT services: how occupational therapy benefits you. The American Occupational Therapy Association Web site. http://www.aota.org/consumers.aspx. Accessed November 27, 2019.