Your Healthcare Team | Living With LGS

Finding the right people to help
An important step in living with Lennox-Gastaut syndrome (LGS) is finding the right professionals for your child’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 In most states, these centers are part of hospitals.² But even if you do not live near a center, it may be helpful to bring your child to one for an evaluation.² They may be able to work with your local healthcare team.² Wherever you go, make sure you feel like you can talk to your healthcare providers and work with them.²

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 roles not outlined here.

Make sure you feel like you can talk to your healthcare providers and work with them.

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
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. Pediatric neurologists are trained to treat a variety of epileptic syndromes, so they may be more experienced than adult neurologists in diagnosing LGS.

Epileptologist
Epileptologists are neurologists who have had advanced training and more experience in diagnosing and treating epilepsy.¹ Pediatric epileptologists receive training in pediatrics, followed by additional training in pediatric neurology and epilepsy.⁵ They also focus more on the family and take into account the child’s capability for judgment and self-care.⁵ They often develop a long-standing relationship with the family and patient.⁵

Neurosurgeon
Neurosurgeons perform surgery on the brain and central nervous system.⁴ A neurosurgeon can help decide if your child should be treated surgically.⁶

Neuropsychologist
Neuropsychologists can assess intellectual function and educational needs.⁶ They can also recommend ways to address behavioral problems that do not require medications.⁶

Dietitian
If your healthcare provider recommends that you treat your child’s LGS with a specialized diet called the ketogenic diet, a dietician may help plan meals.⁶ Your doctor will be the one to initiate this treatment.⁷

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 more: Safety measures »

References:
^1.	Frequently asked questions. Centers for Disease Control and Prevention Web site. http://www.cdc.gov/epilepsy/basics/faqs.htm#8. Updated September 7, 2010. Accessed September 27, 2010.
^2.	Baruchin A. Working toward total seizure control. New York Times. http://health.nytimes.com/ref/health/healthguide/esn-epilepsy-know.html. May 16, 2008. Accessed September 27, 2010.
^3.	Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy Centers. Minneapolis, MN: National Association of Epilepsy Centers; January 12, 2010.
^4.	Working with your doctor. American Academy of Neurology Web site. http://patients.aan.com/go/workingwithyourdoctor. Accessed September 27, 2010.
^5.	Data on file. Eisai, Inc., Woodcliff Lake, NJ.
^6.	Glauser TA, Morita DA, Stannard KM. Lennox-Gastaut syndrome. eMedicine Web site. http://emedicine.medscape.com/article/1176735-treatment. Updated April 26, 2010. Accessed September 27, 2010.
^7.	Bainbridge JL, Gidal BE, Ryan M. The ketogenic diet. Pharmacother. 1999;19(6):782-786.
^8.	OT services: how occupational therapy benefits you. The American Occupational Therapy Association Web site. http://www.aota.org/consumers.aspx. Updated May 21, 2009. Accessed September 27, 2010.