Re: Behaviors in Charge

[Guest guest]

,

I dont' know where you got that birth number from (it looks to me like

the total US population in 2002!!). I went to the HHS website and

found 4,019,280 births in the US in 2002 ( I would assume Canada would

be about 1/10 of that based on overall population). That would

translate to about 400 babies with CHARGE at 1 in 10,000.

Meg

>

> Autistic-like behavior in CHARGE syndrome --Hartshorne TS.; Grialou

TL.;

> KR. American Journal of Medical Genetics, Vol 133A, Issue 3,

March 15,

> 2005, 257-261. (2005)

> (reads in part):

> " Children with CHARGE syndrome frequently exhibit moderate to severe

> behavior difficulties, and are often diagnosed with

obsessive-compulsive disorder,

> attention deficit disorder, Tourette syndrome, and autism. "

> (and):

> " Total scores on the ABC for children with CHARGE were significantly

> different from the norms for those with autism, and those who were

deafblind.

> However, the variance for CHARGE was larger than for the normative

groups, >>and

> 27.5% of those with CHARGE could be classified as autistic. <<

subscale scores for those with CHARGE differed from the other

normative

> groups. "

> __________end of cited material. ( I trust it says what I think it

says)

>

> In 2002 there were 281,057,000 births in Canada and the U.S.

> At 1 in 10,000, we would have a Charge population increase of

28,100 in

> the US and Can. alone in a

> single year.

> Reducing that by half leaves 14,050. By 2/3rds results in 9273

(surviving)

> new Chargers in one year in

> North America only. (those reductions are arbitrary. I don't know the

> survival statistics)

> And add to that the possibility that the autism statistics of 1 in

every

> 150-160 births result in autism-ASD

> (and you can slice that up any way you want to), are even remotely

accurate-

>

> I strongly question if the Charge model that we tend to represent is

> actually typical, or accurate.

> Or have we inadvertently left out a large segment of the Charge

population

> because we don't

> seem to sufficiently embrace or address the extent of the

behavioral aspects

> of Charge.

>

> If no one can abide by the labels that currently exist, then I

suggest we

> pick a new one-

> or make one up-because as it is we are standing still in " Old News " ,

> relegating who

> knows how many parents to have to deal with this huge aspect of

Charge on

> their own.

>

>

> And maybe today, we're at the end of our story as we know it.

That's the

> same ending that

> existed 22 years ago, and it just plain leaves too much out, I think.

>

> I think we do in fact realize that the physical deficits,

deafblindness,

> and varied

> processing disorders, niether sufficiently account for, nor can

remedy all

> the

> behavioral disorders possible in Charge.

> (What is autism/ASD if not a processing disorder, even possibly just a

> little further down the

> gene river from where we think we are.)

>

> How many Charge kids have food allergies, and have experienced

improved

> health,

> improved mood, concentration, and sleep and behaviors when the

offending

> foods were

> removed. There is more to be gained down that road. Not to

mention that

> once a mechanical

> fix is found that keeps the food going in the right direction, the

medical

> profession stops looking

> at digestion in Charge. Why?

> Some chargers have weaker immune systems. Medical science says that

> involves the intestines.

> If chargers aren't producing hormones-isn't it possible they not

producing

> enzymes?

>

> What is the relationship between internal and external environment and

> behavior?

> What could be more intimate than ingesting something external and

converting

> it into

> your own body. That makes it relevant.

> What is there available that we can give our attention and our voice

to,

> that takes a 21st

> century, and possibly a more universally encompassing, approach to

Charge.

>

> ;-)

> in Ma.

>

>

>

>

>

>

>

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>

>