||02-16-2009 05:38 PM
Today has been pretty sucky. But that might actually be a good thing.
As with any medical condition that's not very well understood, there are a ton of "alternative therapies" with no medical studies to back them up. Some actually have medical studies to disprove them, and some are just really hard to test. One of the most popular alternative therapies is the Gluten-free, Casein-Free diet, which falls into the latter category: it's really hard to have a double-blind study, because parents can't pretend they don't know what their kid is eating from day to day, and usually the only way to quantify symptoms is by the parents' reports. There have been two major studies, but one showed a correlated reduction in autism symptoms, while the other showed no correlation. Anecdotal evidence on the web seems to indicate in general that it either works astoundingly great, or doesn't work at all--which is reasonable; there are so many forms of spectrum disorders it's not hard to believe there could be different causes for different types. At any rate, it's widely conceded that the diet can't hurt you, so doctors will tell you to try it if you feel like it.
ANYWAY. The theory behind it is that the kid is unable to properly digest gluten (wheat), casein (milk), or both, and the result of partial-digestion is a peptide which, if it were to get out of the intestines, through the bloodstream, and into the brain, would function exactly like an opioid: i.e., autistic kids are actually high as a kite on narcotics 24 hours a day. The thing that struck me when reading the vast amounts of glowing anecdotal evidence ("my kid started the GFCF diet and suddenly began talking for the first time three days later, was potty-trained a week later, was diagnosed as no longer having autism six months later, etc.") was that, just like all opioids, these peptides would be highly addictive--and one of the hallmarks of children who had responded well to the diet was that they utterly craved the offending foods.
Minifob's diet is maybe as much as 50% dairy. He wants 3-4 different kinds of dairy at every meal, and it's always had to be the bargaining element: 'you can only have more cheese after you eat some more X.' I can't think of a single dairy product he has ever rejected.
So we went cold turkey on Saturday. Well, almost--milk hides in freaking everything, and in the process of figuring out which baked goods he can't have (answer: most of them) I forgot to realize that, duh, M&Ms are milk chocolate, and he gets those as a reward for having dry diapers. So he actually had one each on Saturday and Sunday before Mr. Clod pointed out (politely) that I'm retarded.
Sunday morning, 24 hours into (almost) detox, he actually said to me, "No ma'am, no banana," which is significant. No ma'am is what I say to his sister, and for him to A.) realize it could apply to someone other than her, and B.) choose to insert this extra phrase when he's already quite familiar with just saying "no banana" is a big deal. But maybe he was gearing up to saying it anyway though, he has definitely been using more words since going to therapy...
Sunday night he started getting edgy, and today he's been a nutball. In theory, that's actually another good sign, because there's supposed to be a withdrawal period. He hasn't gotten the shakes or anything :), but he does lay on the floor and ferociously scream when I tell him (for the hundredth time) that he can't have any cheese. And his general twitchiness notwithstanding, I'm pretty sure he said this morning, "This is a red spoon." He always identifies his spoon color, but the words "this is a" have never come out of his mouth before.
So. In another couple of days there should either be much more visible progress, or I'll be forced to admit that I've been seeing what I wanted to see for the last two days. I'll tell you this: while it would obviously be the greatest thing in the world to have discovered a magical switch that will suddenly clear his brain and give him an unobstructed path back to normalcy, a totally dairy-free diet is freaking hard to maintain. We basically can't take him to any restaurants if we're going to stick with this. On the other hand, it's not as hard as a dairy and gluten-free diet, so I'll be grateful if we don't have to go the extra mile and remove the second half from his diet as well.
Also: cheese and yogurt "substitutes" are the nastiest things on the planet. Not only did Minifob not want to eat them, I couldn't even stand the smell of them in the kitchen myself.