Introduction

Cleveland_Clinic_Host: It has been long recognized that seizures often lessen or disappear during periods of fasting in some individuals with epilepsy. The diet has been used mostly in children with difficult-to-control, generalized epilepsies--such as those with the Lennox-Gastaut syndrome (a form of severe epilepsy that mainly affects developmentally and mentally delayed children with seizures that include generalized but brief body jerks, drop attacks, and grand mal seizures). In this group of individuals, the diet can be as successful as medications.

Take advantage of this opportunity to chat live with Ingrid Tuxhorn, MD, and get answers to common questions regarding epilepsy & diet. Bring your own questions to the web chat. This is your time to ask!

Dr. Tuxhorn earned her medical degree from Cape Town University, South Africa and has completed pediatric residencies at Baystate Medical Center in Springfield, Mass., and Yale New Haven University Hospital in New Haven, Conn.; a clinical research fellowship in child neurology at the University of Kiel in Germany; a fellowship in pediatric neurology at the University of Massachusetts Medical Center in Worcester, Mass.; and a fellowship in clinical neurophysiology at Cleveland Clinic. She is board-certified in Pediatrics, board-eligible in Pediatric Neurology and board-eligible in Clinical Neurophysiology. Her specialty interests include pediatric epilepsy, epilepsy surgery, and cognitive and behavioral outcomes after pediatric epilepsy surgery.

Cleveland_Clinic_Host: To make an appointment with Dr. Ingrid Tuxhorn, or our Cleveland Clinic Center for Brain Health, please contact us directly at 216.636.5860 or 866.588.2264 or visit our web site clevelandclinic.org/brainhealth

Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Ingrid Tuxhorn. We are thrilled to have her here today for this chat. Let’s begin with some of the numerous questions we have received.

Ketogenic Diet: How does it Work?

howtodo: Can you please outline the ketogenic diet and how it works?

Speaker_-_Dr__Ingrid_Tuxhorn: KD involves a total modification of food intake. It needs to be supervised closely by a dietician and an experienced physician. We do not know how it controls seizures. The ketones appear to be important. The diet involves reducing carbohydrates to a point that the body takes its energy from fats which are converted into ketone bodies.

The dietician sets up the diet individually with each family. The classic diet consists of 4 grams of fat per 1 gram of carbohydrates. Certain foods are not compatible with the ketogenic diet (e.g. breads, fries, cookies, regular ice cream) and would need to be reduced.

mutton: Does this diet work for any child with epilepsy? If not, what would make a child a good candidate?

Speaker_-_Dr__Ingrid_Tuxhorn: The diet works best with young children (under the age of 2 years) who have infantile spasms. But it can be used in toddlers and school aged children as well. Children with very frequent daily seizures respond best.

12blue: I have 2 children (9 months and 2 years old) that both have partial complex seizures. Can my young children go on this diet?

Speaker_-_Dr__Ingrid_Tuxhorn: Yes, with supervision and if medications have not worked. I would also recommend a good diagnostic evaluation with video EEG monitoring and MRI scan.

sitteron: Would this diet replace my son's medication, or would he still have to take it?

Speaker_-_Dr__Ingrid_Tuxhorn: Yes, if the diet controls the seizures we are sometimes successful in stopping all other anti-seizure medicines.

Ketogenic Diet Effectiveness

caltonp: I have read that the ketogenic diet can be more successful for children whose seizures have recently gotten worse. Is this true and why would it be true?

Speaker_-_Dr__Ingrid_Tuxhorn: The ketogenic diet (KD) is very effective in treating seizures - approximately 10% become seizure free, 50% have more than 1/2 seizure reduction. However, it is a medicinal use of food intake and requires close medical supervision. If AED's have not worked to control seizures the ketogenic diet may be effective and should be tried.

plunn09: What happens if my daughter were to go off the ketogenic diet periodically– would it be harmful?

Speaker_-_Dr__Ingrid_Tuxhorn: The diet only works when the patient is in ketosis. So going off the diet would reverse the beneficial effects. You need to speak to your treating physician and dietician about this. Generally children are on the diet for a number of years before it is stopped. If your daughter is having side effects (hunger, weight gain or growth issues) the diet may need to be modified regarding the amounts of calories, fat ratio (classic 4:1, 3:1). The modified Adkins diet is less strict, easier to follow and may be an option.

hardyharhar: If my son goes on the ketogenic diet, how long will he be on it?

Speaker_-_Dr__Ingrid_Tuxhorn: If the diet works, we know this within a few days. The diet should be continued if the family is happy with seizure control for as long as needed - usually a number of years. If the diet doesn't work to control the seizures, we stop the ketogenic diet after 3 months.

hunterb: Isn't this diet the same or almost the same as the Atkins diet? Doctors have always criticized the Atkins diet saying that it is harmful and not healthy. How can I consider putting my 8 year old son on it, based on these criticisms?

Speaker_-_Dr__Ingrid_Tuxhorn: It is much stricter than the Atkins diet and needs to be medically supervised.

Ketogenic Diet: Does it Work for Adults with Epilepsy?

martink: Would this diet also be effective for adults?

Speaker_-_Dr__Ingrid_Tuxhorn: It may be used for adults but is generally not as effective. The modified Adkins diet and other diets low in carbohydrates (low glycemic index diet) may be tried out.

Ketogenic Diet: Precautions

certaint: What precautions would I need to take if my child were to go on this diet?

Speaker_-_Dr__Ingrid_Tuxhorn: Many precautions regarding food intake need to be considered. No snacking, strict calorie counting, weighing of foods, sufficient vitamins and trace elements are some of the precautions. The correct ratio of fats:carbs:proteins is important to make the diet work. Families need to be very creative with their recipes.

It is also important to note that the diet is initiated during a hospital admission and intensive education regarding the diet takes place with the family.

Ketogenic Diet: Side Effects

certaint: What are possible “side effects”?

Speaker_-_Dr__Ingrid_Tuxhorn: The diet is well tolerated with good supervision and has few side effects. Supplementation with essential nutrients, vitamins and trace elements is very important. Cholesterol levels may sometimes increase and can be treated by modifying fats. Growth and weight also needs to be monitored and calories adjusted.

Ketogenic Diet: Where Do You Start?

temper: If I am interested in having my daughter go on this ketogenic diet, who does she see - her neurologist? A dietician? Where would we start?

Speaker_-_Dr__Ingrid_Tuxhorn: You should talk to your neurologist first. The Cleveland Clinic Epilepsy Center offers the ketogenic diet as well as other forms of treatment for epilepsy (surgery, new anti-epileptic drugs.) Appointments may be scheduled by contacting 866.588.2264 or the website clevelandclinic.org/epilepsy.

Refractory Epilepsy

fsilber: When my daughter was 6mo and her development was regressing, she was diagnosed with infantile spasms. ACTH didn't help; Tegretol® helped but began to lose effectiveness. At 18mo we put her on the ketogenic diet, which quickly normalized her EEG and stopped the seizures. After two years we took her off the diet, and she seemed completely cured. A couple of years ago she began developing depression, which six months ago morphed into rapid-cycling manic-depression, and she began having absence seizures. We brought her to a neurologist who strongly suspects temporal lobe epilepsy with complex partial seizures. Later this summer she will have comprehensive testing in the hospital with a prominent epileptologist. She's on five drugs now, which moderate much of the bipolar, but not so much luck with the seizures. I hear that Temporal Lobe epilepsy is often cured surgically. If she turns out to be a candidate for the operation, would it be a good idea to try the modified Adkins diet first, or just go for the surgery?

Speaker_-_Dr__Ingrid_Tuxhorn: If your daughter turns out to have temporal lobe epilepsy, she may be an excellent candidate for surgery. If this is the case, don't wait by trying the Adkins diet first. A detailed pre-surgical evaluation is very important to go ahead with as your daughter appears to have refractory epilepsy which started early in life.

fsilber: I just Googled "refractory epilepsy" -- it seems to mean epilepsy that cannot be suppressed by drugs? (After the ketogenic diet began, my daughter seemed to be seizure free for about 15 years, however, I understand that adolescence often triggers epilepsy, or a return thereof. During the seizure-free period her development normalized and caught up; academically she is very advanced.)

Speaker_-_Dr__Ingrid_Tuxhorn: As far as I understood your daughter continues to have seizures at this point?

fsilber: Yes, she began having absence seizures, about 15 years after the infantile spasms went away, and they continue despite a couple of drugs she's on.

Speaker_-_Dr__Ingrid_Tuxhorn: Your daughter has difficult to treat (refractory epilepsy). Further evaluation is a very good idea.

Epilepsy & Fish Oil

sz21405: Dr. Tuxhorn, we read anecdotal reports about intake fish oil daily helps with decreasing and sometimes eradicating seizure episodes. What is your opinion on the relationship of fish oil and seizures? Would you recommend this to your patients as young as 4 years old?

Speaker_-_Dr__Ingrid_Tuxhorn: There are no good studies to confirm that fish oil can successfully treat seizures. I would not recommend this as a treatment for your child's seizures.

fsilber: Wouldn't fish oil be a good component of the Modified Adkins diet for epilepsy?

Speaker_-_Dr__Ingrid_Tuxhorn: Yes, you are correct; fish oil could be a good source of calories and fats with the modified diet. So-called MCT oil (medium chain triglycerides) is an excellent source of fats which are well well-tolerated and keep the cholesterol level low.   However the diet needs to be worked out with a dietician to ensure adequate calories for growth, proteins, sufficient carbohydrates and important dietary supplements.

AEDs: Anti-Epileptic Drugs

sz21405: Does intake of AEDs (anti-epileptic drugs) for about 4.5 years slow the growth of kids - noticed that the height and weight gain of our son is remarkably slow?

Speaker_-_Dr__Ingrid_Tuxhorn: Generally AEDs do not affect height and growth. There are many possible reasons for this and a proper diagnosis needs to be made. AEDs may affect calcium and vitamin D metabolism which can be diagnosed with a blood test and treated.

sz21405: As a follow-up to the question about AEDs affecting physical growth, does complete right anatomical hemispherectomy affect endocrine functions and thus, affect a child's physical growth? Would a consultation to an endocrinologist be necessary? Our child is 5 yrs. old and has been hovering on 28-30lbs. for the past 2.5 years at a height of 3ft. 4inches.

Speaker_-_Dr__Ingrid_Tuxhorn: Yes, I recommend seeing an endocrinologist if height is <3rd percentile. Sometime genetic causes affect physical growth.

hadarlaor: Are there foods and natural supplements that you recommend to eat after a seizure?

Speaker_-_Dr__Ingrid_Tuxhorn: There are no specific dietary recommendations after a seizure. Do you have specific concerns regarding swallowing?

Non-Epileptic Seizures

sz21405: What further diagnostic procedures do you recommend for your patients if the parents believe they see seizure episodes, but they are not reflected on a weeklong video EEG (no epileptiform discharges seen), but on video blank staring is evident?

Speaker_-_Dr__Ingrid_Tuxhorn: If the video EEG does not show a seizure discharge during staring spells, we are most likely dealing with non-epileptic events. If you are however concerned about frequent staring spells, re-consult your doctor for further evaluation.

sz21405: What do you mean by non-epileptic events?

Speaker_-_Dr__Ingrid_Tuxhorn: Very good question. Non-epileptic events are defined as spells that look like seizures but are not associated with EEG changes. They may be tic-like movements or behavioral events.

sz21405: What is/are the treatment/s for non-epileptic events?

Speaker_-_Dr__Ingrid_Tuxhorn: The treatment depends on the type of non-epileptic event. Tics are generally benign and require no treatment. Pseudo-seizures require further evaluation by a child psychiatrist and psychologist.

sz21405: Do non-epileptic events go away as the child ages?

Speaker_-_Dr__Ingrid_Tuxhorn: Yes, they may go away depending on the type.

Epilepsy Medication Question

sweetlisha83: My husband and I are expecting Oct. 29, and I was wondering if I would be able to breastfeed on the Keppra® or if I should talk to my dr. about getting it changed?

Speaker_-_Dr__Ingrid_Tuxhorn: Please speak to treating physician about breast feeding while you are on Keppra® (levetiracetam). Your doctor should decide based on your particular case.

More Information

For more information about The Cleveland Clinic Epilepsy Center and our specialists at Cleveland Clinic you may visit clevelandclinic.org/epilepsy.

To make an appointment with Dr. Ingrid Tuxhorn , or our Cleveland Clinic Center for Brain Health (CBH), please contact us directly at 216.636.5860 or 866.588.2264 or visit our web site clevelandclinic.org/brainhealth

A remote second opinion may also be requested from Cleveland Clinic through the secure eCleveland Clinic MyConsult Web site. To request a remote second opinion, visit eclevelandclinic.org/myConsult.

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The Ketogenic Diet – A Treatment for Children and Others with Epilepsy Authors: John M Freeman MD, Eric  H Kossoff MD,  Jennifer B Freeman, Millicent T Kelly RD. Fourth Edition, Demos Medical Publishing. ISBN-13:978-1-932603-18-7. Email: orderdept@demosmedpub.com

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