One of this week’s features is on dietary therapy for epilepsy. How many of you have diet experts as part of your epilepsy treatment team? Do you know who should be part of your team and what they do?
Why should you have a treatment team for dietary therapy?
A dietary therapy for epilepsy is a medical treatment and should be followed by health care professionals, just like any other treatment.
- While good nutrition is best for everyone, when you have epilepsy and a specific diet is recommended, you should have experts in diets for epilepsy as part of your team.
- Dietary recommendations may vary depending on the type and frequency of seizures, other health conditions, nutritional needs, and your ability to follow and manage the diet, to name a few things.
- Each person may have a different role on your team and you may see some more than others, depending on how well the diet is working and how easy it is to follow.
Who should be part of your Epilepsy Diet Team and what do they do?
- You – the person with epilepsy, adult or child, who will be following the diet. The diet only works as long as you can follow it every day. Your likes, dislikes and ability to follow the diet long-term will be a key part of deciding which diet to try and how to make the diet work for you.
- Your family or caregivers – The people involved in making decisions for your epilepsy should be part of your team. For a diet treatment, you should also have the person(s) who helps or does the food shopping, meal preparation, and monitoring of your response to the diet.
- Epileptologist – this is a neurologist with special expertise in epilepsy.
- Before trying an epilepsy diet, you should see an epilepsy specialist to confirm your diagnosis and understand as much as possible about your type of epilepsy and how medicines or other treatments have worked.
- If you want to try a dietary therapy, you may also be referred to an epilepsy diet specialist to help assess which diet may be best. This specialist may follow you long-term or consult with your usual epilepsy specialist at times.
- Dietician or nutritionist – Ideally this person should have experience in diet therapy for epilepsy.
- Your doctor may have you meet with a dietician/nutritionist before considering a diet treatment. Some diets, for example the ketogenic diet, have special dietary requirements that need to be checked ahead of time.
- A less restrictive diet, like the modified Atkins diet or low glycemic diet, may be tried first for a few months.
- If you respond to the diet and continue it, you should see a dietician/nutritionist to help monitor your nutritional status and the types of foods being used.
- Epilepsy Nurse – Lots of factors affect how well a diet will work. If you can’t follow it, don’t want to do it, or have trouble managing the diet, then it won’t work well, if at all. Most epilepsy centers that use dietary therapies have nurses who will work with you and your family.
- At some point during your treatment, you should meet with the nurse to gain a full understanding of the diet, learn how to start it and stay on it and gather all the practical tips for following the diet over time.
- The nurse can help you coordinate or implement the diet treatment in other settings or with other caregivers, for example school nurses, camps, group homes, or jobs.
- Primary care provider – Your general health care provider (a doctor, nurse practitioner, or other provider) should know that you are following a special diet.
- Your epilepsy team may ask you to see your primary care doctor first to make sure that a diet for epilepsy won’t interfere with any other medical problems.
- Certain blood or urine tests may be needed before you start a diet to check your general health.
- While on the diet, you may need blood or urine tests done periodically to make sure your body is tolerating the diet well.
How can I find epilepsy diet help?
- Use our Find An Epilepsy Center look-up for an epilepsy center near you. Not all centers use dietary therapies. When you call to schedule an appointment, ask if they use dietary therapies and what other dietary resources or people they have.
- Read about how epilepsy diets have gone ‘global’ to find resources worldwide.
- Visit the Charlie Foundation to find resources and training for dieticians and other professionals, as well as resources for you and your family.
Remember, you and your family or loved ones should always be at the center of your care team. At times your team will involve doctors or nurses at a hospital or clinic. Other times you need different types of professionals that may be based at a center or in your community. For diet treatments, remember these are therapies that need monitoring over time to make sure they are working and that your body is responding well. Having a well-rounded Diet Treatment Team will help you accomplish this!
Have a safe week!
Patty Osborne Shafer RN, MN
Associate Editor/Community Manager