|
|
By Eric Kossoff, MD
Perhaps one of the least discussed but most important of the changes in ketogenic diet research in the past decade has been the identification of its side effect profile. During the 1920s and 1930s, when the ketogenic diet was one of the most popular anticonvulsant therapies, side effects such as acidosis (low bicarbonate levels in the blood), constipation, and abnormal menstrual periods (in adult women) were discussed and were just starting to be investigated.
However, over the following 60 years, research into the ketogenic diet focused nearly exclusively on demonstrating that it worked in order to answer its critics, rather than researching side effects. All this has changed in the past decade, and now that the ketogenic diet is no longer perceived as an alternative treatment, as James Wheless, MD, titled his editorial in 2001, the ketogenic diet is a “medical therapy with side effects”, and researchers have agreed.(1) Although most of the side effects I will discuss are important to be observant for, and can be bothersome, it is rare to have to stop the diet because of them.
The most common, almost “expected”, side effects of the diet are constipation, acidosis (especially with illness), and decreased weight gain (not often weight loss). These are often addressed immediately when the diet is started, especially using Miralax™ for constipation. The less common side effects, generally occurring in 1 in 20 children, include high cholesterol, kidney stones, growth slowing, and gastrointestinal upset.
In 2001, Peter Kwiterovich, MD, reported in JAMA our experience at Johns Hopkins Hospital in regards to cholesterol of children on the diet.(2) In general, most children have a 30% increase in total cholesterol, LDL cholesterol, and triglycerides. Fortunately, this increase happens within 3 months but usually doesn’t continue to increase (and in studies of children on the diet for over 6 years, may return to normal). Although we often recommend adding MCT oil (link to Keto News article), increasing the percentage of polyunsaturated fatty acids, and lowering the ketogenic diet ratio, these interventions have been looked at in only small numbers of patients. Many families are worried about the long-term effects of high cholesterol, but we suspect that the short periods of time that most children are on the diet do not impact later atherosclerosis.
Around the same time, in 2000, Susan Furth, MD, showed both that there is a 5% chance of kidney stones in children on the diet and that it was more likely to occur in those who had high amounts of calcium in their urine.(3) She suggested that using Polycitra K™ to make the urine less acidic and bind up calcium would help prevent stones. Just this year, Amitha Sampath, MD, from our group proved she was right: by using Polycitra K™ there was 3 times less risk of stones.(4) Since January 2006 at Hopkins, all children started on the diet are also started on Polycitra K™.
Growth is also slowed somewhat by being on the diet. Children tend to follow the growth curves, but mostly stay around the 5th percentile.(5) Children under age 2 years are at the most risk for growth disturbance, and therefore we tend to use lower ketogenic diet ratios (e.g. 3:1) in this age group to allow for more protein. In children on the diet for over 6 years, nearly all were at the 5th percentile. It is hard to argue that this is probably a minor problem for a child having hundreds of daily seizures, but it is worth monitoring to keep children as healthy and normal as possible.
Very recent information also suggests that bone density can be a problem while on the diet, similar to being on medications. Children appear to have lower bone mineral density, which can lead to an increased risk of bone fractures, especially in children on the diet for over 6 years.(6) Christina Bergqvist, MD, found that Vitamin D levels initially increase due to supplementation on the diet, and after several months they decline, and this may partially explain the problems with bone density.(7) Studies are underway using DEXA scans to monitor children on the diet.
Over the past decade, several case reports have described unusual, but serious side effects possibly attributable to the ketogenic diet. They include inflammation of the pancreas, prolonged QT intervals in heart rhythms, enlargement and problems with the heart muscle, selenium deficiency, severe carnitine deficiency, and basal ganglia changes (a deep part of the brain). We do not know at this time the true incidence of these problems, but they appear to be very rare.
The Charlie Foundation and many ketogenic diet experts are interested in creating a web-based side effect registry for the diet, as already exists for anticonvulsant drugs by the Food and Drug Administration. Physicians would enter anonymous information about a side effect they think may be due to the diet, and then could find out if any other doctors have seen it, too (and then contact them for how they treated the side effect.)
We are clearly in an exciting time for the ketogenic diet, but as its use grows, the occurrence of side effects will also grow. The future is bright because physicians are trying not only to identify side effects, but prevent them from happening.
References
Submitted: 10/30/07
Reviewed by Steven C. Schachter, MD
Welcome to the Wiki. This space is created for epilepsy.com members to share their own experiences and expertise to help refine and expand the discussion around important topics.
No members have yet contributed to this topic. If you are not yet an epilepsy.com member, register today to get started on this Wiki topic and the many other advantages of being a member. If you are a member and wish to be the first to edit this Wiki topic, please make sure to login, then click on the orange "Start Wiki" button at the top of this page. Or, learn more about Wikis.
| Title | Posted | |
|---|---|---|
| Diet and Development... Could a poor diet trigger seizures? Can seizures disrupt child speech and language development? | May 5, 2009 | |
| msmall02 | ||
| View all Forums | ||
| Title | Posted | |
|---|---|---|
| Switching to Topamax from Depakote ER.. Advice? | Nov 7, 2009 | |
| jessicarenee | ||
| just diagnosed today | Nov 7, 2009 | |
| heidibo | ||
| Surgery is the way to go! Slowly but surely recovering! | Nov 7, 2009 | |
| mark_88 | ||
| A Scary Doctor | Nov 7, 2009 | |
| snoodle | ||
| 12 year old with complex febrile seizures | Nov 7, 2009 | |
| lesevonnne | ||
| Simple Partials Seizures-What Are Yours Like & Duration? | Nov 7, 2009 | |
| Maria7 | ||
| Might Calcium Disorders Cause Seizures? | Nov 7, 2009 | |
| Nerak95 | ||
| Might Calcium disorders Cause Seizures? | Nov 7, 2009 | |
| Nerak95 | ||
| Topamax,Keppra causing liver damage?! | Nov 7, 2009 | |
| baubua24 | ||
| Ecstatic Seizures | Nov 7, 2009 | |
| victoria.w | ||
| View all Forums | ||
| Title | Page Views | |
|---|---|---|
| my.epilepsy.com Updates | 20,421 | |
| epi_help | ||
| topamax and weight loss | 18,946 | |
| alexia mom | ||
| kepra | 18,834 | |
| brian mattingly | ||
| Possible cure for absence seizures | 15,714 | |
| pdl1 | ||
| Epilepsy and marijuana | 15,207 | |
| cjad234 | ||
| Sexual Side Effects | 13,076 | |
| George R | ||
| How exactly do aura's feel | 12,888 | |
| WendyBendy | ||
| MEDICAL ALERT I.D.'s | 11,355 | |
| picnupthepcs | ||
| Over 40 Different Types Of Seizures - Revised | 10,009 | |
| spiz | ||
| electrical shock in head? | 9,420 | |
| Maggie | ||
| View all Forums | ||
| Title | Posted | |
|---|---|---|
| Getting things together | Feb 11, 2009 | |
| confuzzed | ||
| View all Blogs | ||
| Title | Posted | |
|---|---|---|
| Need help and guidance | Nov 7, 2009 | |
| djvanks | ||
| Cancer and Epilepsy | Nov 7, 2009 | |
| horseman | ||
| Heck of a day | Nov 7, 2009 | |
| 4mygirl2 | ||
| The Last Voice | Nov 7, 2009 | |
| cindy thacher | ||
| Ugg boots | Nov 7, 2009 | |
| shirts | ||
| UGG lays its charm | Nov 7, 2009 | |
| shirts | ||
| UGG lays its charm | Nov 7, 2009 | |
| shirts | ||
| 29 years old, had seizures since I was 8. | Nov 6, 2009 | |
| dkalra | ||
| Stroll for Epilepsy Awareness | Nov 6, 2009 | |
| bookworm03 | ||
| Epilepsy Advocacy | Nov 6, 2009 | |
| krjohnson | ||
| View all Blogs | ||
| Title | Page Views | |
|---|---|---|
| Inspirational Quote - My Own Personal Inner Thoughts | 8,002 | |
| Butterflygrl | ||
| my partial complex seizures | 3,856 | |
| Zanna1211 | ||
| Topomax... The Dreaded......... | 3,647 | |
| Dr Jason | ||
| Brain Zaps, tics & twitches | 3,463 | |
| JudiS | ||
| side effects of phenobarb. | 3,061 | |
| pksmom | ||
| Feeling Sick | 2,890 | |
| JBJ1984 | ||
| How can you tell if a sleep seizure happens? | 2,853 | |
| epl_controller | ||
| Tegretol XR and ANXIETY meds | 2,790 | |
| Butterflygrl | ||
| TYLENOL, AEDs & SEIZURES | 2,699 | |
| cmscribbles | ||
| Nonepileptic "Events" vs. "Seizures" | 2,591 | |
| teft | ||
| View all Blogs | ||
| Title | Posted | |
|---|---|---|
| tomagni's group | Apr 1, 2009 | |
| tom2000 | ||
| View all Groups | ||
| Title | Posted | |
|---|---|---|
| Project Uplift | Nov 4, 2009 | |
| tamliniscute | ||
| SEIZURE FREE | Nov 3, 2009 | |
| gracie9933 | ||
| EPILEPSY SUPPORT GROUP NORTH CAROLINA | Oct 9, 2009 | |
| Roxanne D | ||
| Community Feedback on Proposed New epilepsy.com Feature | Sep 30, 2009 | |
| kdredske | ||
| Parent with Child with Epilepsy,Dystonia, and Autism | Sep 24, 2009 | |
| TashaCole | ||
| RX outreach Program | Sep 22, 2009 | |
| mw | ||
| Fun and Games | Sep 22, 2009 | |
| phylisfjohnson | ||
| Epilepsy and Memory Loss?? | Sep 17, 2009 | |
| lindseygthatsme | ||
| Epileptic Postictal Psychosis | Sep 14, 2009 | |
| Bravedefender | ||
| Northern California Volunteers | Sep 11, 2009 | |
| cannemo73 | ||
| View all Groups | ||
| Title | Posted | |
|---|---|---|
| My Mother suffers from absence seizures | Nov 7, 2009 | |
| baubua24 | ||
| My Meningioma Story | Nov 7, 2009 | |
| Maria7 | ||
| My First time | Nov 7, 2009 | |
| SteveDaw | ||
| My Epilepsy | Nov 7, 2009 | |
| amberbrady5384 | ||
| The crazy spiritual journey that is a seizure. | Nov 6, 2009 | |
| zeus1223 | ||
| 29 years old; epilepsy since I was 8. | Nov 6, 2009 | |
| dkalra | ||
| my experience with epilepsy | Nov 6, 2009 | |
| Sabia | ||
| Family with Epilepsy | Nov 5, 2009 | |
| thunley | ||
| My Story Of How I Was Diagnosed With Epilepsy. | Nov 5, 2009 | |
| bass_babyx | ||
| Lorrelei71 | Nov 5, 2009 | |
| Lorrelei71 | ||
| View all Stories | ||
| Title | Page Views | |
|---|---|---|
| Jessica Roiz | 2,274 | |
| kroiz | ||
| (TLE) seizures, most misunderstood condition | 862 | |
| wenko | ||
| my story | 466 | |
| snoby | ||
| Always Have On Clean Underwear | 437 | |
| crashllama | ||
| Kelly's Life With Epilepsy | 416 | |
| kjcanada1979 | ||
| my brain has died a thousand deaths........... | 394 | |
| banffgirl | ||
| What My Seizures Are Like...... | 377 | |
| javaman | ||
| Nocturnal grand mal seizures (primary generalized epilepsy) | 330 | |
| karalyeva | ||
| Life......... | 329 | |
| dizzygal | ||
| Crystal's story | 326 | |
| Crystal11 | ||
| View all Stories | ||
