Updated Recommendations of the International Ketogenic Diet Study Group
Back in 2006, The Charlie Foundation along with several of us in the ketogenic diet community realized that we had enough solid information to create a guideline for doctors and dietitians using the ketogenic diet for epilepsy. This “consensus statement” was published in the journal Epilepsia in late 2008 and was the work of 26 international neurologists and dietitians. It was endorsed by the Child Neurology Society and Charlie Foundation and was one of the first big papers discussed here in Keto News!
10 Years of Research and Expertise Improves Dietary Therapy Guideline
Now one decade later, it was time to revise and update this important document.
- We now have nearly 3,000 published articles on the ketogenic diet, the MCT (medium chain triglyceride) diet, modified Atkins diet (MAD), and low glycemic index treatment (LGIT) available. There has been a lot of new research in the past 10 years into diet initiation, medications with the diet, management, supplements, and how to stop the diet. Much of this research has been discussed here in Keto News over the past 10 years.
- There are also many new doctors and dietitians in the field. Although we couldn’t include them all, we added 6 new authors to the new guideline. Most of the new authors are from outside the United States. Similar to 2008, we also surveyed the authors about how things have changed in ketogenic diet practice over the past decade.
This updated guideline was published online May 22, 2018, in the journal Epilepsia Open. It is free for anyone to download courtesy of a kind donation from the Carson Harris Foundation. It was endorsed again by The Charlie Foundation and Child Neurology Society and this time by Matthew’s Friends as well.
Highlights of the New Guideline
Since it’s very long (!), here are some of the major highlights:
- The list of “indications” for using ketogenic diet therapy was clarified (as those with at least a 70% responder rate) and now includes: Angelman syndrome, complex 1 mitochondrial disease, FIRES (febrile illness-related epilepsy syndrome), Ohtahara syndrome, super-refractory status epilepticus, Dravet syndrome, Doose syndrome, Glut-1 deficiency syndrome, formula-fed children, infantile spasms, pyruvate dehydrogenase deficiency, and tuberous sclerosis complex.
- Lots more information and guidance based on new research specifically for Glut1 deficiency syndrome in included.
- Flexibility is the norm now: Centers and patients can pick between all four major diets. (There is good evidence they all work!) Although we suggest the classic ketogenic diet for children under age 2 years and MAD or LGIT for teenagers over age 12.
- Similarly, although most centers still admit for the diet (80%), 92% believed admissions were optional. Fasting is also viewed as optional, but 72% of the keto centers in this guideline no longer start the diet with a fast.
- The only mandatory supplements remain vitamins, calcium, and Vitamin D. Many others were listed as optional.
- Children should be seen back in 1 month after starting the diet if possible.
- Recommendations for labs at follow-up did not change considerably from 2008, but now selenium levels, total carnitine, and an EEG (electroencephalogram) (when considering stopping the diet) are suggested.
This version of the consensus statement will hopefully be revised again in 2028 after 10 more years of research. We suspect there will be more research and information about supplements (including exogenous ketones), long-term side effects (including the need for DEXA (dual-energy x-ray absorptiometry) scans to check on bone health), and value of serum ketone monitoring. In addition, this guideline did NOT address non-epilepsy uses or using diets in adults.
- Kossoff EH, Zupec-Kania BA, Auvin S, Ballaban-Gil KR, Bergqvist AGC, Blackford R, Buchhalter JR, Caraballo RH, Cross JH, Dahlin MG, Donner EJ, Guzel O, Jehle RS, Klepper J, Kang HC, Lambrechts DA, Liu YMC, Nathan JK, Nordli Jr DR, Pfeifer HH, Rho JM, Scheffer IE, Sharma S, Stafstrom CE, Thiele EA, Turner Z, Vaccarezza MM, van der Louw EJTM, Veggiotti P, Wheless JW, Wirrell EC. Optimal clinical management of children receiving dietary therapies for epilepsy: Updated recommendations of the International Ketogenic Diet Study Group. Epilepsia Open 2018, online.
- Kossoff EH, Zupec-Kania BA, Amark PE, Ballaban-Gil KR, Bergqvist ACG, Blackford R, Buchhalter JR, Caraballo RH, Cross JH, Dahlin MG, Donner EJ, Jehle RS, Klepper J, Kim HD, Liu YMC, Nation J, Nordli, DR Jr, Pfeifer HH, Rho JM, Stafstrom CE, Thiele EA, Turner Z, Veggiotti P, Vining EPG, Wheless JW, Wirrell EC, Charlie Foundation, and the Practice Committee of the Child Neurology Society. Optimal clinical management of children receiving the ketogenic diet: recommendations of the international ketogenic diet study group. Epilepsia 2009; 50:304-317.