Using Dietary Therapies in Adults with Lennox Gastaut Syndrome

Do dietary therapies for seizures work in adults?

While most research has been done in children with epilepsy, ketogenic diet therapies appear to work well in adults too.  They are becoming more widespread in use, especially at major academic epilepsy centers.  The diets can be difficult to start and maintain in adults, however, due to food restrictions and the work needed to use the diet.  People who already have developed food preferences may not be willing to give up certain foods.

What are the barriers in using dietary therapies for adults with LGS?

In adults with cognitive and behavioral problems seen in adults with Lennox Gastaut Syndrome (LGS), the practical aspects of using the diet are often the main limiting factors

• Some health care professionals may assume the diet is not practical and don’t offer it as an option.
• Some people with LGS may have tried the ketogenic diet as a child and don’t know about or consider one of the modified diet treatments as adults.
• Many people with hard to control seizures aren’t followed at epilepsy centers or have access to dietary specialists in epilepsy. 
• Supported living settings who care for many adults with LGS may consider restrictive diets as limiting a person’s rights.
• Following a diet therapy requires having people able to shop and prepare special foods. This help many not be available in supported living or day programs.

What steps are needed to make the diet work in adults with LGS?

• See an epilepsy specialist at an epilepsy center, an epilepsy nurse and dietician. The physician or advanced practice nurse will evaluate the person’s appropriateness and recommend one of the diet therapies. A nutritionist/dietician is needed to ensure that the person is getting appropriate nutrition and to help caregivers modify and implement the diet as needed. The nurse can help caregivers and agencies learn about the diet as a medical treatment, address barriers, help implement the diet, and assist in monitoring its effect over time.
• See your primary care provider and make sure the epilepsy providers communicate with him/her about the diet’s benefits, possible risks, and monitoring. You may need buy-in from both teams to work with community caregivers.
• The person with LGS and their guardian, if appropriate, must be involved from the beginning.
• A meeting involving the person with LGS or guardian, epilepsy team, and community caregivers is helpful to identity barriers and assess the ability of caregivers to support and implement the diet.
• Since the diet restricts some foods, human rights policies of some state organizations for people with developmental disabilities may perceive the diet as an ethical dilemma.  Letters of medical necessity may be needed from the epilepsy and primary care providers stating why the diet is needed and describing it as a medical treatment, not a human rights restriction. The guardian’s support is also needed here.
• The ability of community caregivers (i.e., group home staff) to buy different foods, prepare meals and be creative in food preparation will be needed. If the person attends a day program, that staff needs to be educated and invested in making this work as well.
• Regular follow-up with the epilepsy team, including the physician, nurse and dietician, will be needed for monitoring seizures, general health and diet adherence (in addition to medications and other epilepsy treatments the person may be using).  

While these steps may seem complicated or unnecessary in some situations, not addressing these may contribute to inability to use or failure of an epilepsy diet therapy in adults with LGS. These tips are not specific to people with LGS. They should also be followed for adults with one of the other epilepsies and developmental disabilities.

Where can I learn more about diet treatments for epilepsy?

• Ketogenic diet
• Modified Atkins diet
• Low Glycemic Index Treatment
• Charlie Foundation

Making any epilepsy treatments work requires teamwork from many people.  Health care and community caregivers truly must work together.  Don’t forget that your Epilepsy Foundation Affiliate is a critical part of your community team!

Best wishes for a safe week and happy autumn!

Patty Osborne Shafer RN, MN
Associate Editor/Community Manager
Epilepsy.com