Given that Dubya exhibits the trifecta of Tourette's (diagnosed ADHD and tic disorder, precocious development of OCD behaviors) and cannot take medications for any of it because one feature of the trifecta contradicts another, we're going the biomed route for him. (NB: One of my favorite discussions and descriptions of Tourette's is here. If you're interested, you should read it. There is also this great doc from HBO. Don't let anyone tell you that what we view as ASD and ADHD and Tourette's, et al., isn't one big spectrum of dopamine dysregulation. Put most succinctly, "Tourette Syndrome was considered rare and exotic at one time (however now,) Tourette's syndrome is a relatively common childhood-onset disorder defined by persistent motor and vocal tics and frequently associated with obsessions, compulsions, and attentional difficulties"). Why, hello, Dubya!
Anyway, yep, the biomed route. We've been doing biomed all along, in our way, for all of the boys, mostly consisting of daily fish oil, something arising from Mr. DMFP's obsession with DHA, a multivitamin, and acidophilus. We started flaxseed oil a long time ago because of TH's issues with constipation, which a new study seems to indicate occurs at higher rates among children with autism. That doesn't surprise me, given the intense anxiety that goes along with being a child on the spectrum. The flaxseed oil took care of that in about a day, and even though we've lapsed a few times in administering it, he's never had a problem since.
That study also found that there are no differences regarding GI issues in general between populations of children with autism and children without. In other words, no science-based rationale for special diets based on assumed intolerances, no higher rates of Crohn's (one child in the 100 with autism and none in the 200 without) and no celiac disease in either group.
We've considered knocking out wheat or something for Dubya, but he doesn't consume that much wheat, anyway, and his tics track more to situations (movies, times when he's "supposed" to be still, times when his dad, whom he worships, is around) rather than to dietary fluctuations. But when Mr. DMFP asked me this weekend if Dubya'd ever "grow out of" having the tics and when his nose tic kicked up in intensity along with some late-night guilt/anxiety spasms burdening Dubya's conscience, I decided that we needed to investigate some avenues of biomed intervention. Mr. DMFP, who's always good at these things, tracked down this list of recommendations, which we sifted and extracted based on our own understanding and information.
Given that the tics appear to become more frequent in times of stress, we're going the B vitamin route in hopes of alleviating some of the stress. B complex, niacin, choline--all shades of growing up with my biomed mother (an acolyte of Adelle Davis) and taking 14 vitamins a day, washed down with milk drinks made of raw milk, raw egg, brewer's yeast, bananas, lecithin, and orange juice. While I'm sure I owe whatever good health I have to this daily torture, it sure was nasty.
Thankfully, the biomed folk have caught up a bit with juvenile taste buds and made some more palatable stuff, including a powdered lecithin to add to Dubya's yogurt. He's getting the B complex (with C for better absorption!), lecithin, niacin, and whatever omega-something-something fat is currently the fat del dia, based on Mr. DMFP's fat research. Mr. DMFP is our fat dealer, and we rely on his ability to deal only in the best fats. All of this is what we'd consider to be evidence-based medicine, but results may vary, so we'll see if any changes pop up.
One thing that has also been recommended is antioxidant supplements, but huge trials have found no benefit of antioxidant supplements in general and have actually identified some fairly scary adverse associations. So, we're sticking with his usual high-antioxidant diet (lots of anthocyanins). Dietary suggestions included cutting out dyes, processed foods, aspartame (!), and caffeine (!), but our children don't get and never have gotten these things, so that's not a concern.
Our big biomed experiment targeting high stress arising from dopamine imbalances has begun. Yes, our n=1 and no, we haven't gotten clearance from our institutional ethics committee, but since we're his parents, we are providing de facto written, informed consent. Results to be published as they emerge.
A blog about parenting, working, worrying, science, writing, worrying, and autism.
5 comments:
Very interesting, Emily. It sounds like it certainly can't hurt to try the supplements, etc. I would like to try some supplements with Charlotte but I have NO idea where to begin or how to determine what she's lacking. She eats a pretty darn balanced healthy diet, takes a multi-vitamin and calcium supplement (b/c she doesn't drink milk). Every time I try to read up on it, I feel overwhelmed with the propaganda that I encounter.
Anyways. About the autism-GI study, okay, so no difference found in the autism population vs main population re: GI issues, so no need to try special diets. But doesn't it make sense for any person who's having GI issues to consider modifying their diet (autism or not?). I just don't see that study has being an indicator not to pursue a special diet b/c of autism.
I would think the reason one should pursue diet modification is more for the GI reasons (autism or not).
Hm. I don't know. I wish we could have a real-live conversation some day just to chat about all this stuff. I know the foods Charlotte consumes affect her (both GI and otherwise) - I just don't know how to get to the bottom of what foods are the issues. What methods to trust?
This is perhaps my longest comment ever on any blog. Aren't you lucky?
I am lucky to have thoughtful readers (and friends) who read and ask good questions. That study just indicates no "science-based" reason to alter diets at first knee jerk with an autism diagnosis. That does not, however, rule out doing whatever the hell you think is right and working for your child. We've never cut things out of our kids' diets because they've never shown signs of allergy and we've never noted (and we've looked) any link between what they eat and their behavior (except for chocolate and sugar).
But we did add to the diet the flaxseed oil, and it was well before we knew about the autism, so it was definitely a modification on behalf of GI issues alone.
One thing I wonder about that most recent study is why they found NO celiac disease among 300 children when another recent study reports some astronomically high (like 25%?) rate of celiac in the pediatric population these days. Does not compute, that.
How to get to the bottom of what foods are at issue? Pick some obvious culprit foods or food content and exclude it. Is there an improvement? If you've excluded a food and reintroduction seems to coincide with re-emergence of symptoms, exclude it again and see if it goes away. That's a fairly good evidence-based reason to continue exclusion. Human physiology is so idiosyncratic that I think parents should be the real scientists on behalf of their children, tedious as it can be. Someday, we're going to have individualized medicine based on genomics, metabolomics, and other tools, but that day is not yet here. That leaves us, the parents, to identify the idiosyncracies of our children's specific physiologies and work with them.
That does not mean, however, that my child's physiology is exactly the same as anyone else's. I always feel defensive when an avid autie parent asks me if we've tried GFCF and then stares at me in disbelief when I answer, "no." In spite of my own social skills issues, I can certainly read what they're thinking, and I don't appreciate it. :-)
And that is a looooong response to your not-that-long comment!
E
We did remove a bunch of foods last year based on IgG test results - but there were thirty (yes 30!!!) things that showed up on the results of that test and it became too overwhelming. So I slowly reintroduced things. That test is known for both false positives and false negatives, it's really not the right measure.
So I think I should take the opposite approach, as you suggest, and remove one at a time. We had let some artificials creep back in (mainly in the form of popsicles) so we're removing them first, and then decide what next.
Milk is already gone as well as ice cream. No one in my family except for me can tolerate milk. Sarah, my 2 yr old, gets reflux when she drinks it, my husband gets sick to his stomach, and the rest of my extended family has issues. It's no surprise that milk is outta there for Charlotte (it makes her start screaming at us and she starts sensory-seeking with her head - it's very weird).
Ah, such fascinating stuff. I'm glad to see you trying the biomed on Dubya. Reassures me you aren't anti-biomed just for the sake of being anti-biomed.
I guess I never thought of myself as "antibiomed" as much as I have considered myself "anti-being-put-on-the-defensive-or-accused-of-near-neglect-of-my-child" for not doing every biomed thing in the book. And, of course, some stuff just defies common sense or any real understanding of physiology or toxicology.
Adelle Davis? Where's the blackstrap molasses?
Post a Comment