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 usually be found at your local hospital.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.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 other professionals not outlined here.

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 epileptologists treat children from birth through the teen years, with the care of children as their focus.5

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.4

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 neuropsychiatrist.

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.7
Here's a video about the potential benefits of the ketogenic diet.

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. http://www.cdc.gov/epilepsy/basics/faqs.htm#8. Updated August 3, 2011. Accessed August 1, 2012.
  • 2. Baruchin A. Working toward total seizure control. New York Times. http://www.nytimes.com/ref/health/healthguide/esn-epilepsy-know.html. May 16, 2008. Accessed August 1, 2012.
  • 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. When to see a child neurologist. ICE Epilepsy Alliance. http://www.ice-epilepsy.org/when-to-see-neurologist.html. Accessed August 2, 2012.
  • 6. Cherian KA. Lennox-Gastaut syndrome treatment and management. eMedicine Web site. http://emedicine.medscape.com/article/1176735-treatment. Updated January 26, 2012. Accessed August 2, 2012.
  • 7. Ketogenic diet in the management of epilepsy. Great Ormond Street Hospital for Children Web site. http://www.gosh.nhs.uk/health-professionals/clinical-guidelines/ketogenic-diet. Accessed October 1, 2012.
  • 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 August 2, 2012.

This Web site contains information relating to various medical conditions and treatment. Such information is provided for educational purposes only and is not meant to be a substitute for the advice of a physician or other healthcare professionals. You should not use this information for diagnosing a health problem or disease. In order for you to make intelligent healthcare decisions, you should always consult with a physician or other healthcare provider for your, or your loved one's, personal medical needs. All quotes included in this Web site represent the individual experience of some doctors, some patients, and their caregivers. Individual responses to treatment may vary.

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