Scary... what do you think of this study on charge!!

[Guest guest]

Okay, since everyone is going there, I have to bring this up. BTW I too

probably on a daily basis question if there is anything that I could have

done different that would have made born healthy. There are so many

different reasons that I do this. One of them is so that I have something to

be mad at something to blame like a pesticide or something, somthing to tell

others to avoid so that there are no other children born with CHARGE

syndrome. I believe it is just human nature to search for some miracle

answer.

Has anyone ever heard of DES. DES is a drug that several women were

prescribed between 1938-1971 from their OBGYNS and they were told that they

were vitamins ad that if they took the vitamins they wouldn't miscarry their

babies. In 1971 the FDA warned all mothers to stop taking the drugs because

it did not prevent miscarraige and that it was causing women in the womb to

develop a rare form of cervical cancer. Apparently daughters and sons of

DES mothers could have several different kinds of problems related to

fertility and cancers and abnormal reproductive tissue etc. My grandmother

took DES for 12 years and had 6 children. 3 of the 6 children believe that

they were affected by the drug ranging from incompetent cervix in 1 child,

cervical cancer in another at the age of 25 needing a hysterectomy, and

infertility in the other they are described of Children of DES mothers. I

am a third generation as I am one of 2 children from one of the daughters of

a DES mother. There is talk about third generation DES children and what

affect it has on them. I have several female cousins that have

horrible cysts on their ovaries resulting in pain, hospotalizations, and

hysterectomys in their 20s. I have 2 healthy children and one child born

with CHARGE syndrome but havent experienced any troubles. My mother was

impacted by being a daughter of a DES mother and since was born

has been going on and on about DES. I have been dismissive of this until

these postings. I thought I would at least mention it to the group.

>

> I don't think it's something I'm concerned about by any means, but I am

> always interested in investigating possibilities and figuring things out.

>

> http://www.chargesyndrome.info

>

> On 10/10/06, Hartshorne, S

<Tim.hartshorne@...<Tim.hartshorne%40cmich.edu>>

> wrote:

> >

> > Michele,

> >

> > I spoke with a mom in Australia who said that when met

> > with her he said " Welcome to the club " and gave her a CHARGE mug and

> > hat. Folks, please don't get so concerned about people doing a study.

> > Because someone is investigating something does not mean that there is a

> > link. We are all exposed to chemicals. I did email with Conny about it,

> > and she does not believe there is any reason to suspect the CHD7 gene is

> > particularly susceptible to chemicals. There is always the possibility

> > that there is something very similar to CHARGE that is. But for now, I

> > see no reason at all to anticipate a link.

> >

> > Tim

> >

> > S. Hartshorne, Ph.D.

> >

> > Professor of Psychology

> >

> > Central Michigan University

> >

> > Mount Pleasant, MI 48859

> >

> > phone

> >

> > fax

> >

> > tim.hartshorne@... <tim.hartshorne%40cmich.edu> <tim.hartshorne%

> 40cmich.edu>

> >

> >

[Guest guest]

For what it's worth....to add to this discussion.....

Before the birth of my son (the father of the charge baby, ) I was given

" Bendectin " for severe nausea and vomiting during my pregnancy. I understand

this drug was taken off the market due to possible relation to " birth

defects " ... I think about this on the back of my mind.....And I think I have

mentioned before, about smoking. That is the first thing I thought of, when

was born with Charge (now I know that is wrong) but I so worried

because Racheal was smoking!! and my son also smokes (which is heart break

for me, because I know the dangers of smoking_).....

Liz

-- Re: Re: Scary... what do you think of this study on

charge!!

Okay, since everyone is going there, I have to bring this up. BTW I too

probably on a daily basis question if there is anything that I could have

done different that would have made born healthy. There are so many

different reasons that I do this. One of them is so that I have something to

be mad at something to blame like a pesticide or something, somthing to tell

others to avoid so that there are no other children born with CHARGE

syndrome. I believe it is just human nature to search for some miracle

answer.

Has anyone ever heard of DES. DES is a drug that several women were

prescribed between 1938-1971 from their OBGYNS and they were told that they

were vitamins ad that if they took the vitamins they wouldn't miscarry their

babies. In 1971 the FDA warned all mothers to stop taking the drugs because

it did not prevent miscarraige and that it was causing women in the womb to

develop a rare form of cervical cancer. Apparently daughters and sons of

DES mothers could have several different kinds of problems related to

fertility and cancers and abnormal reproductive tissue etc. My grandmother

took DES for 12 years and had 6 children. 3 of the 6 children believe that

they were affected by the drug ranging from incompetent cervix in 1 child,

cervical cancer in another at the age of 25 needing a hysterectomy, and

infertility in the other they are described of Children of DES mothers. I

am a third generation as I am one of 2 children from one of the daughters of

a DES mother. There is talk about third generation DES children and what

affect it has on them. I have several female cousins that have

horrible cysts on their ovaries resulting in pain, hospotalizations, and

hysterectomys in their 20s. I have 2 healthy children and one child born

with CHARGE syndrome but havent experienced any troubles. My mother was

impacted by being a daughter of a DES mother and since was born

has been going on and on about DES. I have been dismissive of this until

these postings. I thought I would at least mention it to the group.

>

> I don't think it's something I'm concerned about by any means, but I am

> always interested in investigating possibilities and figuring things out.

>

> http://www.chargesyndrome.info

>

> On 10/10/06, Hartshorne, S <Tim.hartshorne@...<Tim

hartshorne%40cmich.edu>>

> wrote:

> >

> > Michele,

> >

> > I spoke with a mom in Australia who said that when met

> > with her he said " Welcome to the club " and gave her a CHARGE mug and

> > hat. Folks, please don't get so concerned about people doing a study.

> > Because someone is investigating something does not mean that there is a

> > link. We are all exposed to chemicals. I did email with Conny about it,

> > and she does not believe there is any reason to suspect the CHD7 gene is

> > particularly susceptible to chemicals. There is always the possibility

> > that there is something very similar to CHARGE that is. But for now, I

> > see no reason at all to anticipate a link.

> >

> > Tim

> >

> > S. Hartshorne, Ph.D.

> >

> > Professor of Psychology

> >

> > Central Michigan University

> >

> > Mount Pleasant, MI 48859

> >

> > phone

> >

> > fax

> >

> > tim.hartshorne@... <tim.hartshorne%40cmich.edu> <tim.hartshorne%

> 40cmich.edu>

> >

> >

[Guest guest]

Tim, in your last few sentences below, would you mind specifying which were

Conny's actual words and which are your recall of her words or are your

independent conclusions/opinions? I was just curious if she said or implied

that there 'could be something very similar to to CHARGE that is

(particularly susceptible to chemicals)', or if those are your words after

thinking about what she said.

Thanks for any clarification you can offer!

:-)

Re: Scary... what do you think of this study on charge!!

> Michele,

> I spoke with a mom in Australia who said that when met

> with her he said " Welcome to the club " and gave her a CHARGE mug and

> hat. Folks, please don't get so concerned about people doing a study.

> Because someone is investigating something does not mean that there is a

> link. We are all exposed to chemicals. I did email with Conny about it,

> and she does not believe there is any reason to suspect the CHD7 gene is

> particularly susceptible to chemicals. There is always the possibility

> that there is something very similar to CHARGE that is. But for now, I

> see no reason at all to anticipate a link.

> Tim

> S. Hartshorne, Ph.D.

>

> Professor of Psychology

>

> Central Michigan University

>

> Mount Pleasant, MI 48859

>

> phone

>

> fax

>

> tim.hartshorne@...

>

>

>

>

>

>

[Guest guest]

LInda,

WOW!

pam

Re: Re: Scary... what do you think of this study on charge!!

Fortunately, each and every one of us is equally qualified to be the

recipient of a spark of wisdom. The structure of DNA, after all, was gleaned

from an

inspired dream, not a test tube. I am sure that as one possible conclusion

is hypothesized, someone else will come along and while standing on that

knowledge, will reach another conclusion, and yet another, etc. As we live in

an

ever expanding universe, how could thoughts or 'conclusions' be any other

way. No matter how hard we chase the edges, the definitive, the finite; it, by

its nature, will always elude us. All knowledge and understanding should be

accompanied by a qualifying statement, such as " this is our best

interpretation at the moment. " (I forget, are butter and eggs good or bad

today.)

Can you foresee a study that quantifies the memory contained in DNA? Or that

can successfully isolate the 1% that makes us human and not monkey? Monkeys

learned how to use tools. Humans dream dreams and bring them into existence.

We create as we go along; at the very deepest levels. The proof is

physically in the quark, and in the lepton; and consciously in 'divine'

inspiration.

How do we know that CHARGE is not just a genetic adaptation-a test case-as

evolution attempts to address a future world situation far removed from the

conditions we live in now? Genetics looks backwards at the situation, because

that's all it can do-not because that's all there is.

Whether or not there is any ultimate value in the current analyses on

CHARGE, who better to be interested, what audience would be more appropriate,

than

us.

Underlying worry states, a natural response to the unpredictable expression

of CHARGE, particularly in the early vulnerable years, preceded the report.

The report became a vehicle of its expression, not the perpetrator. None of us

are disqualified from successful discrimination when its time comes.

in Ma. (, 21 yrs)

[Guest guest]

brenda dad was in vietnam to hmmmmmmm its funny how we all link up soemhow

isnt it

>

> LInda,

> WOW!

> pam

>

> Re: Re: Scary... what do you think of this study on

> charge!!

>

> Fortunately, each and every one of us is equally qualified to be the

> recipient of a spark of wisdom. The structure of DNA, after all, was

> gleaned from an

> inspired dream, not a test tube. I am sure that as one possible conclusion

>

> is hypothesized, someone else will come along and while standing on that

> knowledge, will reach another conclusion, and yet another, etc. As we live

> in an

> ever expanding universe, how could thoughts or 'conclusions' be any other

> way. No matter how hard we chase the edges, the definitive, the finite;

> it, by

> its nature, will always elude us. All knowledge and understanding should

> be

> accompanied by a qualifying statement, such as " this is our best

> interpretation at the moment. " (I forget, are butter and eggs good or bad

> today.)

> Can you foresee a study that quantifies the memory contained in DNA? Or

> that

> can successfully isolate the 1% that makes us human and not monkey?

> Monkeys

> learned how to use tools. Humans dream dreams and bring them into

> existence.

> We create as we go along; at the very deepest levels. The proof is

> physically in the quark, and in the lepton; and consciously in 'divine'

> inspiration.

> How do we know that CHARGE is not just a genetic adaptation-a test case-as

>

> evolution attempts to address a future world situation far removed from

> the

> conditions we live in now? Genetics looks backwards at the situation,

> because

> that's all it can do-not because that's all there is.

> Whether or not there is any ultimate value in the current analyses on

> CHARGE, who better to be interested, what audience would be more

> appropriate, than

> us.

> Underlying worry states, a natural response to the unpredictable

> expression

> of CHARGE, particularly in the early vulnerable years, preceded the

> report.

> The report became a vehicle of its expression, not the perpetrator. None

> of us

> are disqualified from successful discrimination when its time comes.

> in Ma. (, 21 yrs)

>

>

>

[Guest guest]

Ellen, your dad was in Viet Nam?

Re: Re: Scary... what do you think of this study on

>> charge!!

>>

>> Fortunately, each and every one of us is equally qualified to be the

>> recipient of a spark of wisdom. The structure of DNA, after all, was

>> gleaned from an

>> inspired dream, not a test tube. I am sure that as one possible

>> conclusion

>>

>> is hypothesized, someone else will come along and while standing on that

>> knowledge, will reach another conclusion, and yet another, etc. As we

>> live

>> in an

>> ever expanding universe, how could thoughts or 'conclusions' be any other

>> way. No matter how hard we chase the edges, the definitive, the finite;

>> it, by

>> its nature, will always elude us. All knowledge and understanding should

>> be

>> accompanied by a qualifying statement, such as " this is our best

>> interpretation at the moment. " (I forget, are butter and eggs good or bad

>> today.)

>> Can you foresee a study that quantifies the memory contained in DNA? Or

>> that

>> can successfully isolate the 1% that makes us human and not monkey?

>> Monkeys

>> learned how to use tools. Humans dream dreams and bring them into

>> existence.

>> We create as we go along; at the very deepest levels. The proof is

>> physically in the quark, and in the lepton; and consciously in 'divine'

>> inspiration.

>> How do we know that CHARGE is not just a genetic adaptation-a test

>> case-as

>>

>> evolution attempts to address a future world situation far removed from

>> the

>> conditions we live in now? Genetics looks backwards at the situation,

>> because

>> that's all it can do-not because that's all there is.

>> Whether or not there is any ultimate value in the current analyses on

>> CHARGE, who better to be interested, what audience would be more

>> appropriate, than

>> us.

>> Underlying worry states, a natural response to the unpredictable

>> expression

>> of CHARGE, particularly in the early vulnerable years, preceded the

>> report.

>> The report became a vehicle of its expression, not the perpetrator. None

>> of us

>> are disqualified from successful discrimination when its time comes.

>> in Ma. (, 21 yrs)

>>

>>

>>

[Guest guest]

yes he was in his young days he was a solidure there now hes a computer

programmer how times change LOL

>

> Ellen, your dad was in Viet Nam?

>

>

> Re: Re: Scary... what do you think of this study on

> >> charge!!

> >>

> >> Fortunately, each and every one of us is equally qualified to be the

> >> recipient of a spark of wisdom. The structure of DNA, after all, was

> >> gleaned from an

> >> inspired dream, not a test tube. I am sure that as one possible

> >> conclusion

> >>

> >> is hypothesized, someone else will come along and while standing on

> that

> >> knowledge, will reach another conclusion, and yet another, etc. As we

> >> live

> >> in an

> >> ever expanding universe, how could thoughts or 'conclusions' be any

> other

> >> way. No matter how hard we chase the edges, the definitive, the finite;

> >> it, by

> >> its nature, will always elude us. All knowledge and understanding

> should

> >> be

> >> accompanied by a qualifying statement, such as " this is our best

> >> interpretation at the moment. " (I forget, are butter and eggs good or

> bad

> >> today.)

> >> Can you foresee a study that quantifies the memory contained in DNA? Or

> >> that

> >> can successfully isolate the 1% that makes us human and not monkey?

> >> Monkeys

> >> learned how to use tools. Humans dream dreams and bring them into

> >> existence.

> >> We create as we go along; at the very deepest levels. The proof is

> >> physically in the quark, and in the lepton; and consciously in 'divine'

> >> inspiration.

> >> How do we know that CHARGE is not just a genetic adaptation-a test

> >> case-as

> >>

> >> evolution attempts to address a future world situation far removed from

> >> the

> >> conditions we live in now? Genetics looks backwards at the situation,

> >> because

> >> that's all it can do-not because that's all there is.

> >> Whether or not there is any ultimate value in the current analyses on

> >> CHARGE, who better to be interested, what audience would be more

> >> appropriate, than

> >> us.

> >> Underlying worry states, a natural response to the unpredictable

> >> expression

> >> of CHARGE, particularly in the early vulnerable years, preceded the

> >> report.

> >> The report became a vehicle of its expression, not the perpetrator.

> None

> >> of us

> >> are disqualified from successful discrimination when its time comes.

> >> in Ma. (, 21 yrs)

> >>

> >>

> >>

[Guest guest]

Hi there!

Brown came to our house and did a write-up on my son ph 3 y.o.

CHARGEr. He stated specifically that CHARGE comes from a male gene. There is no

way that the woman is responsible. As well the men should not feel

responsible because it is not within our control - Just happens. We still ask

ourselves

from time to time if we could of done anything different but remind

ourselves of the conversation we had with . We really thought it was an

environmental factor because we live in the valley in California. There is a lot

of

crop dusting going on and ph was conceived during a time of heavy

spraying. You can literally taste the chemicals in the air around here when the

spraying takes place so of course it would lead you to believe that it may have

an

affect but Brown says not the case. Hope that alleviates a bit of

pressure.

Best regards,

Joe, Gwendelyn, Chloe, Jo-Jo and