The AAP Looks Into Biomed (and I throw out the xanthan gum)
So the American Academy of Pediatrics has met with leaders of advocacy groups, including Autism Speaks and the Autism Society of America, and also with “representatives of Defeat Autism Now! (a program of the Autism Research Institute) in an effort to facilitate communication between pediatricians, parents and researchers about the diagnosis and treatment of children with autism.” Very interesting—–I would not be surprised if pediatricians have been receiving numerous inquiries from parents about the kinds of biomedical treatments that DAN! supports. Hopefully the AAP can provide pediatricians with straightforward and thoughtful responses to parents’ requests and also provide solid medical advice about the dangers of some biomedical treatments such as chelation. (And yes, I know there is, from time to time, an ad for Chelorex, a “chelation agent” on this website—guess I need to some ad-detox.)
Regarding biomedical treatments: We have tried a number of these for Charlie when he was younger. We stopped short of chelation; Charlie’s results for heavy metals came back low (to the consternation of the DAN! practitioner) and the whole idea of this treatment just did not seem right to us, or necessary.
I still remember the smell of the cod liver oil and the brown stain the SuperNuthera left on one of Charlie’s white t-shirts. The first thing we started Charlie on was the gluten-free casein-free diet and this has been the “treatment” that Charlie has been on the longest—though he has been eating more and more foods with gluten with no ill effects. (Dairy products are to be avoided for Charlie, but I avoid them myself.)
In fact, it recently occurred to us that some gluten-free products—such as gluten-free bread made with various non-wheat flours held together by all various thickening agents—-have the potential to give Charlie a stomach ache just as much as anything else. Sure, we could forbid giving Charlie any bread, but things are different with a boy who’s ten going on eleven and who loves to go to places—restaurants and grocery stores and the Journal Square PATH station and the subway and up and down 7th and 9th Avenues in Manhattan—and constantly denying him foods that he wants just makes him want to eat them more. So I would not be surprised if slowly, Charlie—with the exception of the dairy products—is no longer on the “special diet,” and biomedical treatments become a thing of the history books for him.
And high time: I wouldn’t want to gulp down cherry-flavored cod liver oil either.
Tags: asd, asperger, autism, biomedical, casein-free, cod liver oil, diet, food, gluten-free, nutrition, pdd-nos, pediatricians, ScienceRelated Stories
POSTED IN: Food and Diet, Health, Treatment
9 opinions for The AAP Looks Into Biomed (and I throw out the xanthan gum)
Marla
Apr 3, 2008 at 4:17 pm
“recently occurred to us that some gluten-free products—such as gluten-free bread made with various non-wheat flours held together by all various thickening agents—-have the potential to give Charlie a stomach ache just as much as anything else.” We have had the same experience! I wonder what that is about? Sensitive to the various agents? Interesting.
We did the cod liver pills for a few years along with diet and never saw any changes. I always thought I would see changes after a month or so but I am convinced it was my imagination. I really wish I could have all the money back on all the junk I bought for M form the age of 18months to about six years old. It was endless. Did you ever try Noni Juice? I was convinced it was the answer for a while too. Argh. What was I thinking???
Leila
Apr 3, 2008 at 4:18 pm
Kristina, hopefully Charlie has grown out of the food intolerance.
I thought about trying the GFCF diet on my son, but he never tested positive for allergies, celiac disease, and also did not have the diarrhea and other symptoms of food intolerance. So we never went GFCF in our house.
Regan
Apr 3, 2008 at 4:26 pm
Let us know how it goes.
I probably mentioned it before, but Eleanor and I are also mostly dairy free (unless we take lactaid or use lactose-reduced products), not because casein gives us problems, but because of lactose intolerance derived from our Asian heritage. When I take the time to put the enzymes into the items and remember to take the pills, we do okay, but dairy is still not one of our menu favorites.
As for the dialog, I’ll believe it when I hear it, and hear the tenor of the discussion. I can’t help feeling that the points of view are sufficiently polarized and incompatible that it seems unlikely, but who knows?
For myself, it would be a useful exercise for the biomed advocates start producing/publishing double blind outcome studies, objective pre-post test measures by blinded observers compared to controls, or even retrospective matched case study metaanalysis rather than anecdote, hypothesis and in-vitro evidence. If there are as many recoveries as claimed, surely there must be enough data by now. If such studies have been produced, please cite them; inquiring minds want to know.
Kristina Chew, PhD
Apr 3, 2008 at 4:37 pm
Never tried Noni juice but recently found some old DMG and out it went.
It’s certainly been interesting to see how various proponents of the hypothesis that vaccines can be linked to autism have been “spinning” the AAP’s meeting with “representatives of DAN!”.
MJ
Apr 3, 2008 at 4:44 pm
“Hopefully the AAP can provide pediatricians with straightforward and thoughtful responses to parents’ requests and also provide solid medical advice about the dangers of some biomedical treatments such as chelation.”
Hopefully they will also provide solid medical information about the other 99% of biomed treatments that aren’t chelation that can that can be a big help for some children. I am a little sick of the scare tactic lines from doctors about simple vitamins - yes I know it is possible to overdose on them and you need to pay attention to the what you are giving them. But the same is true for almost everything else you give your child.
It is interesting that different children have different results with the special diets. My children have been on GFCF for a year now and the differences are very noticeable. Within the first few weeks their behavior started changing for the better; it was like they were able to pay more attention to the world around them.
Regan
Apr 3, 2008 at 6:17 pm
I don’t even know why I am mentioning it, except that someone might see “xanthan gum” as something particularly scary (looks scary in that bag in that amount).
It falls in the category of “hydrophillic gum”, along with agar, psyllium, kelp, and some other thickening and binding agents. I tend to avoid some of these myself, and in the powder or capsule form it is a good idea to drink alot of water with it to avoid an obstruction, and if you take/use too much it’s a good idea to stick close to the bathroom since one use is stool softening.
Given my druthers, I’d probably bind my cornbread with flour and eggs than xanthan anyway, but it’s not really cue the scary music stuff.
(Just a note from an old health-food hippie.)
Emily
Apr 3, 2008 at 6:37 pm
I’ve never had a doctor give me any problem about giving vitamins to my children or taking them myself. In fact, if anything, they’re always riding me about it, asking us if we do it to make sure we are. And doctors and midwives alike have always been urgent about my taking prenatal vitamins when I was pregnant. I hate taking vitamins.
Kristina Chew, PhD
Apr 5, 2008 at 12:15 pm
@Regan,
You wrote “(Just a note from an old health-food hippie)”—
Here let it be revealed: One reason it was a natural shift for me to put Charlie on a diet with lots of vegetables and fruits, whole grains, healthy this and healthy that is because “health-food hippie” (with a dash of Alice Waters) is what I’ve eaten/cooked for years and years. My mom had Diet for a Small Planet and avocado seeds growing in jars with toothpicks when I was growing up.
@Emily,
that vitamin smell—-
Regan
Apr 5, 2008 at 3:31 pm
“avocado seeds growing in jars with toothpicks when I was growing up.”
LOL. So did we! Is that a Bay Area thing?
Diet for a Small Planet and Laurel’s Kitchen, 1st edition… :-)
Have an opinion? Leave a comment: