What is an alternative diet anyway? When we talk about alternative diets, we are referring to the modified Atkins diet (MAD) and lowglycemic index treatments (LGIT). These diets were invented in the early 2000s and were briefly touched upon in the 4th edition of this book. They are now much more widely used and deserve a section to themselves. Note: The MCT diet is a way to get fat in a slightly different way than the classical ketogenic diet and is not considered alternative per se (covered in Chapter 20).
The key benefit to these diets, and primary difference, is to achieve seizure control but in a less restrictive way. Both diets are similar to each other and also similar to the ketogenic diet; both require medical supervision. We look at them as more tools in your toolbelt, rather than competition. Similarities include high fat, low carbohydrate, and usually slightly lower calories (because it’s hard to eat that much fat independently). Both the MAD and LGIT do need commitment from a parent and family, as well as the child. They still will be eating different foods, and their lifestyle will change somewhat. Cookies, candy, and cupcakes are still pretty much forbidden. Eggs, bacon, and cream are still encouraged (although a bit less so with the LGIT). Labs including cholesterol need to be checked before starting and every few months.
Jordan was a 4-year-old boy with seizures in a family of six living in an Amish community. The family ate in large groups and was very concerned that eating separately would make Jordan self-conscious. In addition, they were worried about the hospital admission for the diet and how their other children would be cared for during a hospitalization. They had also never slept in a hospital before. After a long discussion and talking to other families, they decided to try the modified Atkins diet first. If that wasn’t helpful, they were given the option to switch to the traditional ketogenic diet. Jordan did great and had excellent seizure control; he never needed to switch after all.
These diets do have differences, primarily in regard to strictness. They allow more carbs and protein, and calories are not carefully monitored. Both are started in the clinic without a fast. Neither diet requires gram scales or weighing of foods, although portion sizes are important to know. We do not know for sure if side effects are fewer, but in our experience so far they seem to be a bit less, especially in terms of the child’s growth and development of kidney stones.
Every child and every family is different. There is no right or wrong answer to which diet your child (or you) should start. The best thing to do is read this book and information on the Internet about these diets and look at recipes. Talk to other families that have done it and ask them. Making a decision does not mean you are stuck with one diet; you can always switch between them if necessary (more on that later in the next chapter). Our current general decision tree is described in the next section.
Jamie was a 3-year-old girl who was started on the low-glycemic index treatment by her local neurologist and dietitian. Although it led to 50% reduction in her seizures, her mom and dad never felt they had a good grasp on how to do it, and often worried they were “doing it wrong.” After a year, they were admitted and started on the ketogenic diet. There was no change in her seizures, but her mom and dad found the ketogenic diet “easier” in some ways as they were given very specific meal plans by the dietitian, and there was less stress due to worry about making the wrong foods. After a year on the ketogenic diet, the family requested switching back to the low-glycemic index treatment to make it a bit easier on Jamie as she found the ketogenic diet tough. This time around, her mom and dad were “pros” and found it much easier.
There are some situations in which we do not generally recommend “alternative” diets, and tell families to go to the traditional ketogenic diet. One situation is children with gastrostomy tubes. There is no “Atkins” formula—ketogenic diet formulas (see Chapter 8) are easy to use and come in 3:1 or 4:1 ketogenic ratios. Therefore, there is no advantage to the modified Atkins diet for these children in being less restrictive. The formula could be made into a 1:1 or 2:1 ratio if necessary as well. A second situation is an infant. Besides the availability of ketogenic formulas, infants are a bit more “high risk,” and we feel the careful calculations of calories and protein with the ketogenic diet may add a level of supervision that is needed for these patients. Similarly, any child with nutritional compromise or fragility may be better served with the close dietitian support of the ketogenic diet. Lastly, families in which there is an obvious need for the extra help and guidance of a dietitian in creating meal plans and recipes do better with the ketogenic diet. Although the alternative diets allow flexibility, we have some families that find it too “vague” or “uncertain” and prefer the unequivocal nature of the ketogenic diet.
The most important thing that we cannot emphasize enough is that no matter what diet you choose to start, you should do it with a neurologist and preferably dietitian available. All of us in the ketogenic diet community have seen disasters where children are started on an “alternative” diet thinking it’s easy and simple, but are either given no support or misleading information. If you read something on the Internet that seems wrong, or your neurologist or dietitian seems confused about something related to the diet, pause and double check. There is nothing worse than a child doing poorly on a diet started by the parents and parents forever thinking that diets will not work. They are often upset years later when it is retried and much more successful.