I hope everyone is staying safe and staying home! I have been receiving lots of emails from patients, parents, neurologists and dietitians asking if there are particular issues for people on ketogenic diets for epilepsy in this COVID-19 crisis. I personally hadn’t heard of any unique keto-related problems, but I asked members of the 2018 International Ketogenic Diet Study Group (who helped create the consensus statement), along with other experts like Dr. Mackenzie Cervenka; Emma Williams from Matthew’s Friends; Stacey Bessone RD; Liz Neal RD, PhD; Susan Wood RD; and Marisa Armeno MD.
Here are some of the answers I’ve received, divided into 3 main questions.
1. Are there particular problems staying in ketosis or with the ketogenic diet for those infected with COVID-19?
The short answer is no. None of the ketogenic diet experts reported particular problems with COVID-19 in those on ketogenic diets, and in general, children with epilepsy are not clearly having more seizures if infected. Several physicians and dietitians polled other centers in their city and similarly reported back no concerns.
From Dr. Pierangelo Veggiotti in Northern Italy, “I have talked to all the mothers of the children who are on the diet and nobody had problems with both ketosis and seizures. Unfortunately, we have a great deal of experience in Lombardia about COVID. From my point of view in Milan and from the experience of my colleagues in the neuropediatric hospitals of Brescia, Bergamo (the city at the center of the pandemic), and Roma Gemelli, there are very few COVID positive children (all with respiratory and gastroenteric symptoms) and none of the positive cases have developed epileptic seizures and/or encephalopathies.”
2. Are there issues with starting or maintaining a ketogenic diet in general?
Some centers have reported concerns with having enough of the high fat, low carb foods on the diet in stores and supermarkets. Milk, eggs, and meats especially can be hard to find in some places. Other high fat foods, such as olive oil, mayonnaise, and nuts, have been less of a problem. In the United Kingdom, some have been providing patients with letters stating they are on a ketogenic diet and need access to larger quantities of foods, such as cream, oils, butter, etc. However, it is not clear that these letters are necessary. Families are sometimes making new recipes to adapt to not having some of the common ketogenic diet foods, such as milk, eggs, or meats.
As many families are in a stay-at-home situation, there have been some comments about the child both snacking more and also trying to cheat with foods more as they are not as busy at home (nor at school or outside). This is especially problematic if the child has autism and epilepsy and is on a ketogenic diet (not being able to control behavioral issues). Some parents have been concerned about not being able to have both parents be in the hospital with them if they are admitted (and less ability to ensure that dextrose or sugar is not given by mistake).
A few teams have described having to quickly adapt to both starting the ketogenic diet (either shortened admissions or outpatient protocols) and seeing children and adults come back in different ways. Telemedicine seems to be very useful and in fact, some centers are going to Zoom or other audio/video clinic platforms to take care of their ketogenic diet patients. I have also heard optimism that providing ketogenic diets by telemedicine, which had been difficult with legal and billing regulations for decades despite the technology, could really expand as a result of this crisis.
There were some tips mentioned by centers trying to do telemedicine:
- Several centers have asked families to make sure they have scales at home to get weights (since we can’t check in the office). This is also important for pediatricians who will often need to know the correct weight for medication dosing in children.
- Some families have hesitated getting follow-ups labs done and may go for prolonged (possibly harmful) periods of time without labs. It is worth ensuring lab work is checked periodically!
- If your hospital has a specific telemedicine computer program, and it doesn’t work – don’t give up! Many centers (like ours) are using Zoom, but often FaceTime and even a phone call can be reimbursed by insurance for medical care.
This is a great link shared by Beth Zupec-Kania RD from The Charlie Foundation on important foods to keep stocked in your house.
Additionally, here is another great page from Emma Williams at Matthew’s Friends.
3. Are there concerns with epilepsy overall?
We have not heard of specific issues or problems among children with epilepsy. Most families are making sure they have telemedicine access to their neurologists and hopefully dietitians as well. Ensuring they are getting 90-day supplies of medications (including vitamins and ketogenic diet supplements) is also a common thread. Lastly, there have been comments about anxiety and stress in some people leading to lack of sleep and increased seizures.