Let me first say that I am asking this only in relation to very specific medical conditions. I am NOT an advocate of ketogenic diets, vegan or not, nor of Atkins, modified Atkins, paleo, etc. I am a whole-hearted supporter of the McDougall principles and have been for a very long time. Both my children were raised dairy-free; I had to compromise on the meat part to get cooperation from dh and the in-laws on the dairy. I am not trying to discredit McDougall or the other wonderful doctors, researchers and practitioners like Campbell, Novick, Goldhamer, Esselstyn, Ornish, etc. In the following paragraphs, I am referring to a very particular small subgroup of people with an actual neurological disorder.
OK, now to my situation. My daughter has Tourette's Syndrome (TS). She was diagnosed at 7 and her tics got bad enough at 12 that we reluctantly put her on medication. She's now almost 16 and has been off the medication for about 8 months; we're watching her ticcing level, which is fluctuating wildly.
I am involved with the TS support group here in New Zealand and occasionally pop into other TS communities around the world. There is no cure for TS and the various medications work to some degree for some/most people - but there's usually a huge side effect trade-off to make and there's no medication specifically for TS. As would be expected for conditions like this, where you can helplessly watch your child literally punch or kick or contort themselves bloody and broken, people are willing to try just about anything. Aside from CBIT (a behavioural therapy approach), supplementation routes include at the most mainstream end magnesium, B6, zinc, and melatonin and go down from there. Many of the alternative therapies that people try in desperation come from epilepsy treatments... which leads me, finally, to extending the keto diet for epilepsy into the management of Tourette's.
A number of people in my TS support group are keenly interested in trying the keto diet to manage their kids' severest symptoms. Some parents already report that they "know" their kids tic worse when they've had lots of "carbs" and of course many of the parents themselves are on variations of low-carb, wheat belly, gluten free, Atkins, and other BS diets. I have seen this discussion on various TS support groups globally. I discount most of the anecdotal evidence - partly because anecdote and bias and all that, but also because the very nature of TS is that tics wax and wane and it can be nearly impossible to attribute a better or worse period to any single factor (even some studies last only a couple of weeks and claim results!). But I know there is actual evidence for a ketogenic diet in certain kinds of severe epilepsy.
My question is does anyone know of any real evidence supporting or contradicting a keto-type diet for moderate to severe Tourette's? I can't find any in a Google search. And if someone does want to try it, what would be the safest way? I cannot see that doing it on a permanent basis could be worth it for any but the most severe, life-threatening tics and seizures. But for 2-4 weeks or a bit longer, to see if there are any indications of it getting better? And then maybe reintroduce foods to measure impact and try to get back to a long-term health-supporting diet... So partly I'm wondering if I can get anything to post in the group and partly I'm wondering for my own situation. DD absolutely does not want to go back on the medication, but if her tics get much worse our legal options to medication are extremely limited (as in zero)...
No way am I going to start feeding my dd dairy -- that's not happening. But I am dimly aware that there are people who say they follow a vegan keto diet. I cannot imagine that the protein and fat load does anything good in the long run, but part of me wonders about balancing out the longer term damage of that vs the shorter term damage of the severe tics. If she continues along the typical curve she's followed so far, she's toward the end of the peak years and it should gradually diminish over the next few years.
Thoughts?
Thanks in advance.
