I am often asked if Reese will be on the ketogenic diet for life.
Sometimes, there are conditions, like GLUT1, that are helped by keto where the child will need to stay on the diet to maintain the results. Other times in pediatric epilepsy, if a child can remain seizure-free for 2 years by any means (meds or keto), there’s a chance they can “outgrow” it. The 2 year mark is not an exact science, but that’s the generally accepted time.
With keto specifically, there is research that suggests that 80% of the time, whatever results were achieved while on the diet will last even after weaning from the diet. So in our case, there’s an 80% chance Reese can remain seizure-free, even after weaning the diet.
The decision to wean will be different for every family and I don’t believe there is just one right way of doing things.
So what does this mean for us?
When we first started this diet, we thought that if we were lucky enough to achieve seizure freedom for 2 years, we would be anxious to wean off the diet as soon as possible and go back to a standard American diet, or at least what we were doing before.
We’ve since reconsidered our stance. If/when we hit the 1 year seizure-free AND med-free mark (which will be about 2.5 years seizure-free), we’ve decided that we’re going to opt for a slow transition to the Modified Atkins Diet. Reese has always been very compliant and we figure we shouldn’t mess too much with what’s working. If Reese’s seizures return, we’ll go back to strict keto (it’s not by any means a bad way of living!). If successful, she’ll probably be Modified Atkins for the foreseeable future… through adolescence at least. I think it’ll be a long, LONG time before Reese eats carbs and I don’t think twice about it.
Regardless, with what we have learned from doing keto, I don’t think we’ll ever go to a standard American diet. We are happier packing our own food in many instances and picking low carb options when available.
I am, however, anxious for a little flexibility (I currently write down every single thing Reese eats to the hundredth of a gram) and maybe even to eventually be able to let Reese split a churro with the family at Disneyland for a VERY special treat and then continue making healthier choices, like bunless burgers.
Holidays will remain less food centered regardless – that’s been a wonderfully welcomed change!
We’ll continue to eat whole, unprocessed foods for a majority of our diets and will always, ALWAYS be thankful for the ketogenic diet as a medical therapy!