A sassy, crafty mama bird from Los Angeles
raising a very sweet little girl with Autism
and a new baby boy in the Midwest... and other stuff, too.

Thursday, December 10, 2009

LA Times article on biomedical treatments for ASD

"I don't care who's wrong or right, I don't really wanna fight no more"
-Tina Turner
Since I'm on this roll of being "in the trenches of Autism"... A few days ago, Greg's mom (also known as Little Bird's Noni) told me about an article in the LA Times: "Autism: kids put at risk". Have a read. Here's the exact email I sent to her in response: Just read it. It's so true that this is ALL experimentation. The chelation (pronounced key-lation) that is mentioned is meant to clean out the body of heavy metals. A lot of parents who watched their totally typical kids change overnight after vaccines feel that the chelation will get the toxins out of their kids. Sounds so scary to me. But, then again, that's NOT our Little Bird. So, I'm not there. Having said that, doing half of the stuff we are doing once seemed crazy to me, too! Amazing statistic that 75% of parents of kids with Autism have tried alternative therapies. It's because we're all DESPERATE! Plus, Little Bird's regular pediatricians** just throw up their arms and say they don't know what to do. Well, that's really easy when you're not living this nightmare and won't be stuck with it for the rest of their lives! So, of course, we're all trying everything out there. Still, everything we do is an experiment and its scary because we have no idea what's gonna happen. Can you imagine what was first thought when someone came out and said "let's put huge amounts of toxic chemicals and poisons into the bodies of cancer sufferers- we'll call it chemotherapy!" Our family is on the front lines! We are in the trenches!! It makes me crazy that there are people fighting back and forth over who is right here; which protocol to follow, etc. Not everything works for every kid!! **Shout out to the bird's pediatrician whom I adore! It's not the fault of general peds that they don't know what to do with kids like mine- they're used to looking in kids' ears and throats and they're good at that. I have a special kid and I need to see specialists for anything beyond the ears and throat. Still, I love my pediatrician for the basics (can you tell she reads this blog sometimes?!!!)


My name is Erin. said...

I'm planning to write a letter of gentle advice to Abby's first two peds, who told me she was fine and that I just had a "strong-willed" baby. I know that they meant well and did a good job on the general stuff, but I needed them to take my inquiries seriously, because they were serious. I have some advice for them, like stock up on pamphlets or websites to send parents to. Telling parents to start journaling concerns and symptoms that they feel are red-flags. Stuff like that, because especially in cases like Abby who seems really typical much of the time, but isn't, how are they supposed to judge in a 20-30 minute check up?

Anonymous said...

Seems ridiculous for doctors and science to spend so much time on esoteric conditions that relatively few people have, compared to the occurence of autism and related conditions. More research and treatments please!! Where's the money!!

Dani G said...

@Erin: if it wasn't for Brodie's very low muscle tone, we wouldn't have known until she was older and wouldn't have sought early intervention. She missed most of her milestones because of the low tone. We started all this at 6 months old!!
@Mommy (aka anonymous): uh-huh, yep, and I agree!

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