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, January 7, 2010

I do voodoo

"Ordinary don't mean nothin', no how
Look what's ordinary now"
-Monsters of Folk

Voodoo: noun- a charm superstitiously believed to embody magical powers. 

Seriously. I looked it up on thefreedictionary.com. I'm bringing this up because today I saw the man I refer to as my voodoo doctor. See, I'm one of the many moms who never, ever believed in the biomedical approach to healing Autism. When I was pregnant, I read Jenny McCarthy's Belly Laughs about pregnancy. Then a year later, she put out Baby Laughs about the first year of mommyhood right when I was there- in the first year of mommyhood. I even read the third, not-so-good-one: Life Laughs.  I was well into my special needs journey when she wrote her Louder Than Words book, sharing with the world that her son had "recovered" from Autism with the help of supplements and diet. Yes, I thought she was nuts. Completely freaking nuts. Then, her best book was published a couple weeks after Little Bird's big bad official ASD diagnosis. I bought Mother Warriors the very day it came out. Never had I ever heard so much hope. Still, I thought it was nuts. Vaccine toxicity? Heavy Metals? Gluten? Casein? These were all new terms to me. I was so sure that these were desperate, crazy parents. And then, I became one. Little Bird became GF/CF within weeks (in 2008).

That brings me to voodoo. See, I'm looking for a miracle. I'm looking for magical powers. That's how I came to the DAN! (defeat autism now!)/biomedical world after 4 years of conventional medicine's therapies and doctors who continuously shrugged their shoulders.
I call Little Bird's DAN! doctor the voodoo doctor. We saw him yesterday. After the success of the flagyl therapy and the supplements she's been on for a few months now, we're ready to add more. 

Alright, here's what she's on:
-Vitamin D
-Fish Oil
-Therbiotic Complete (powerful probiotics)

Here's what we're adding:
-Vitamin E (antioxidants)
-Isometrix (multivitamin)
-folinic acid

I'm going to try the B12 shots again. She didn't do so well the last time around; very hyper and stimmy with a side of scripty. This time, I'm going to give her half the dose and I'm adding the folinic acid, which should make a difference. Now that her gut is healed a bit, she might be able to better absorb the B12. We'll see. 

I was reading my bible last night, Healing the New Childhood Epidemics by Dr. Kenneth Bock, and I found that CoQ10 was thought to be extremely beneficial for kids with neuromuscular conditions, especially those with mitochondrial issues. Well, then why didn't my bird's neuromuscular neurologist suggest we give her a little CoQ10 2 1/2 years ago when he was so convinced that she had a mitochondrial disease that we did a muscle biopsy and cut a chunk of her thigh muscle out for testing??? Normal, by the way. Why didn't the specialists suggest creatine supplements back when they said her low muscle tone is so significant, they've only seen winging scapulae in textbooks?! 

Well, they weren't moving us forward, so we're moving on. That's how I've become one of those crazy moms. But guess what?  That's what's ordinary now. In my world, crazy moms are the new normal. 


My name is Erin. said...

I like your brand of crazy.

Crystal said...

Yay for you. It's working for so many people. Just an FYI (and I'm soooo far from an expert, but from what I've learned), if your child couldn't handle the methyl B12 shots, they might be counterproductive for her genetics. We do a more individualized type of biomed that has been introduced by Dr. Amy Yasko. I LOVE it. Will never go back to ordinary DAN. The methylation pathway's genetics sometimes require different types of B12 than methyl, and also, the folinic acid you're starting could be another one that would be relatively useless if you have a certain mutation, I can't remember which one it is, though...we have to use FolaPro, he can't absorb the others. :)

Dani G said...

@Crystal: She had been getting 0.1ml methylcobalamin so I'm gonna cut it in half to try again. We'll see. Snowflakes- no two are the same!
We'll just keep trying til we get it right!

Anonymous said...

You go, girl! Seriously, keep on going! You are doing a fantastic job, warrior mommy!
Jenn G

Anonymous said...

All that stuff she is taking... reminds me of the 60's! Humm......

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