Thursday, May 1, 2008

Magic Bullets


I'm a member of a couple message boards for parents with kids with Autism. I'm a member on a county wide board, a southeastern Michigan board, and a board visited by people worldwide that focuses on biomedical information concerning Autism.

I peruse this board daily, along with the others, looking for post topics that tickle my fancy. Often times, those topics are so complicated, I don't even begin to delve into the mysteries of the post itself! For instance, here's one" kinase P13 in: Autism can be treated - by Carolyn Dean, MD, ND and E". Wow, what the heck? I tried to read on, and not being the sharpest knife in the drawer, I became bored and lost, with the chemistry discussion that ensued, and confused. "Kinase P13"?

Sometimes on this very board, some topics do tickle my fancy, and almost could have been written by me! Usually these are inquiries. Case in point:


Subj: Concentration and Focus Issues
> My son has come such a far way, but his ability to focus and
> concentrate in class is a huge problem for him. He fails miserably
> with pen/paper tasks.
>
> Can anyone recommend any treatments they found useful?

Interesting. Like I said, I could have asked about the same thing easily. In fact, attention and foucus, or lack there of , is probably one of our biggest issues right now with Casey. So of course I was anxious to see what people had to offer in response.

The responses ranged from suggestions of Occupational Therapy intervention, to some prescription drug suggestions (odd on a biomed board). But one really jumped out at me, short, simple, and extremely weird....

Re: Concentration and Focus Issues
>Adrenal Cortex Extract!!

>Julie

Well, thanks Julie! That is really informative! That's certainly not like writing "Tylenol" if someone might ask what is good for a headache! Adrenal Cortex Extract?! What the hell? I guess Julie thought that perhaps everyone who really needed to know about this ADE as I like to call it would simply get their google on! And so I did. I googled it, and of course scores of websites came up about ADE. Wow, sounds like another "Magic Bullet". Oh, how I wished I had 3 hours to sit and read everything I could. Not! After reading the first webpage devoted to this ADE, I got weirded out:

>
Adrenal extracts are derived from the adrenal glands of bovine (beef) sources. Commercially available adrenal extracts are made using the whole gland (whole or total adrenal extracts) or just the cortex or outer portion of the gland (adrenal cortex extracts). The adrenal glands are a pair of small glands that lie just above the kidneys.
<

Bovine? Ick...It didn't tell me much and further investigation forced me to go back to my search bar and add "and Autism" to my ADE query. Pretty much everything that had popped up previously did again. All the sites mentioned ADE helped with such conditions as Hypoglycemia, inflammation, drug and alcohol withdrawal, stress management, trauma, allergies and Addison's Disease. Ok, but how does it help with focus and attention in children with Autism JULIE?

So, being the investigative reporter that I am, I decided to go to the source of the statement and see how she, Juile, the orginal poster of this cryptic message, could enlighten me more than any of the websites.

I emailed her a short and polite request for info on her experience and recieved this:

>Bonnie,

I have been reading up on adrenal function lately. I think this is a
major key to the puzzle.

When the body is under stress, oxidative from the inside or pressures
from the outside world, the adrenals work come into play. They excrete
cortisol to cope with this stress. They stimulate the sympathetic
nerves
to jump into action, otherwise known as the 'fright or flight'
response.
Outward indications are sweating, dilated pupils, lots of energy
(running around) and decreased digestion. This is just temporary but if

stress becomes chronic, then the body constantly pumps out cortisol
and
the adrenals over time start to exhaust themselves. Less cortisol is
pumped out....symptoms of low cortisol/ fatigue are inability to combat

inflammation, constipation, sleep problems and I have a feeling that
these strange sensory sensations (eg strange reaction to hair brushing
as if it hurts) the children have are also due to low cortisol....


.....For the best explanation of adrenal issues, go to
www.adrenalfatigue.org

We have been supporting the adrenals here with adrenal cortex extract
and niacin and have been seeing excellent progress...more mental energy

and altogether more with it. Vitamin C given several times daily seems
toplay an mportant role.

After 6 years of being on these lists, I am beginning to think that
whatever triggered the autism/ASD, created such a shock and in turned
overchallenged the adrenals. I think if you can get the adrenal glands
back into action, then half the battle is won.

Sorry, in haste as I have a deadline tomorrow.


Julie :-))<

Well, ok. So, you've been poppin' some stuff into your kid pulled out of bovine adrenal glands because you "think" adrenal function may be a major key to the puzzle. You're basing this on your readings and have decided this would be a good idea.
I'm sorry, did I miss in this email about her doctor or DAN practioner supporting this? Don't apologize for your hasty response Julie, I got all I needed from your email (and the happy face by your signature helps too!).

Sorry if I sound cynical. I am really glad her kid is benefiting from Adrenal Cortex Extract, I am.

But, I have found that I have benefited from years of experience. I have seen this sort of response on boards over and over, a parent offering up the Magic Bullet that helped their kid! I have to confess, had I read this about 4 years ago, I probably would have already ordered some of this ADE from one of the many supplement websites on the internet. I would have waited in anticipation for it to arrive, gotten it, waited a few days because my conscience would be asking me "Do you really want to give this to him?", and then I would, and there wouldn't be a change....nothing. I did this so many times, wasted so much money, so much money, and hope.

I guess I decided to write about this whole message board exprience not to pout about my own mistakes, but to let anyone who might read this who is new to the whole Autism thing know that you should be leery, oh so leery of Magic Bullets. And boy are there a lot of them. I probably still have 12 half empty bottles of them in my cabinet. It's bad enough when companies sorta play on the innocence and naitivite of parents who are looking to help their child. But I think it's even worse when a parent throws out something so irresponsibly like Julie did. You don't just post one term and not offer up any info. So, people read Julie's post, they have a 3 year old whose in preschool and they get daily reports that their kid can't focus, and they order this stuff without research. I'm telling you, it can happen. And then their kid has some sort of bad reaction because they gave too much or too little and no one was policing this from a medical stand point.

We fortunately didn't have any really bad reactions to the "Magic Bullets" we tried. Oh, there was the "I hear Teletubbies" Debacle of 2002 when tried DMG, but that's another story. I just hope no one else does either.

BEWARE THE JULIES AND ADRENAL CORTEX EXTRACTS OF THE WORLD!!!!!! There is no Magic Bullet, and if there is, please tell me more about it than it's name!