Re: Fw: The Urgent Need for Down's Syndrome Research

[Guest guest]

Down's Syndrome is a progressive degenerative disease that gradually destroys the health of mind and body. Down's Syndrome seems to not be very serious when the children are young, especially if there are no serious problems.

If you ask me... LIFE is a progresive degenerative disease... we're ALL getting a little closer to dying each day!!

Not to say medical research isn't needed however, but I also have a hard time fathoming that the majority of parents don't realize their child has a degenerative medical condition. You don't just wake up the day you get the diagnosis, and KNOW how to be a parent to a handicapped child, and KNOW what to expect for their future and know how you'll handle it. So support groups are important when they're young, it leads us to a better understanding of what to expect when they get older.

If you ask me, this is also why we need to be more vocal about MDS. I know that my son wasn't getting the typical care that is suggested for Downs children (ie, thyroid testing, etc) because he was mosaic, and I recently had to go to the pediatrician and tell him I don't want my child given less screening because the medical field seems to think that because they are mosaic, they are at a lower risk.

So there's my 2 cents... ::::wink::::

Angel,

Mom to , MDS/Hirschsprung's Disease

[Guest guest]

Not to be controversial or anything and I say this will all due respect to those who disagree, but...

I heard this prognosis about DS being degenerative when my baby was about six months and was very disturbed about it. I did some investigation on my own and have come to this conclusion.

The reason that most parents that have children with any kind of DS diagnosis don't know that DS is degenerative is that there is no evidence that it is. The only theory that I found on this is proposed by those people that are making considerable money offof elixers and vitamins to stop the degenerative process. My doctor did confirm that people with Downs do have enzymes that are not present in others but there is no evidence to indicate that it causes damage to them.

My boy Ben is now three years old and not on any special vitamin therapy. You'd better believe that if his condition started to deteriorate, I would be on the bandwagon. So far I have taken a wait and see approach and he is continuing to thrive.

So, I would say to parents that are hearing this degenerative theory for the first time to not be alarmed and check it out for yourself.

Carol

>From: LDSAngel77@... >Reply-To: MosaicDS >To: MosaicDS >Subject: Re: Fw: The Urgent Need for Down's Syndrome Research >Date: Mon, 8 Apr 2002 13:02:55 EDT > > > > > > Down's Syndrome is a progressive degenerative disease that gradually > > destroys the health of mind and body. Down's Syndrome seems to not be very > > serious when the children are young, especially if there are no serious > > problems. > >If you ask me... LIFE is a progresive degenerative disease... we're ALL >getting a little closer to dying each day!! > >Not to say medical research isn't needed however, but I also have a hard time >fathoming that the majority of parents don't realize their child has a >degenerative medical condition. You don't just wake up the day you get the >diagnosis, and KNOW how to be a parent to a handicapped child, and KNOW what >to expect for their future and know how you'll handle it. So support groups >are important when they're young, it leads us to a better understanding of >what to expect when they get older. > >If you ask me, this is also why we need to be more vocal about MDS. I know >that my son wasn't getting the typical care that is suggested for Downs >children (ie, thyroid testing, etc) because he was mosaic, and I recently had >to go to the pediatrician and tell him I don't want my child given less >screening because the medical field seems to think that because they are >mosaic, they are at a lower risk. > >So there's my 2 cents... ::::wink:::: > >Angel, >Mom to , MDS/Hirschsprung's Disease Send and receive Hotmail on your mobile device: Click Here

[Guest guest]

I agree 100%, from the original email all the people in the study seemed to

be at least 40 years old. If you take any group of people that are greater

than or less than 50 that have been institutionalized for an extended period

of time will have health issues that the general public doesn't. The

important thing is take all of this with a grain of salt.

If we all make sure we are getting our children all the PREVNTATIVE Medical

help they need as well as a balanced diet that includes plenty of exercise

and fresh air they will live to a jolly old age.

It also important to keep the medical advances that have been made not only

in the last 10 years but the last 50 years.

Re: Fw: The Urgent Need for Down's Syndrome Research

>Date: Mon, 8 Apr 2002 13:02:55 EDT

>

>In a message dated 4/7/2002 8:21:58 AM Pacific Daylight Time,

>masanda@... writes:

>

>

> > Down's Syndrome is a progressive degenerative disease that gradually

> > destroys the health of mind and body. Down's Syndrome seems to not be

very

> > serious when the children are young, especially if there are no serious

> > problems.

>

>If you ask me... LIFE is a progresive degenerative disease... we're ALL

>getting a little closer to dying each day!!

>

>Not to say medical research isn't needed however, but I also have a hard

time

>fathoming that the majority of parents don't realize their child has a

>degenerative medical condition. You don't just wake up the day you get the

>diagnosis, and KNOW how to be a parent to a handicapped child, and KNOW

what

>to expect for their future and know how you'll handle it. So support groups

>are important when they're young, it leads us to a better understanding of

>what to expect when they get older.

>

>If you ask me, this is also why we need to be more vocal about MDS. I know

>that my son wasn't getting the typical care that is suggested for Downs

>children (ie, thyroid testing, etc) because he was mosaic, and I recently

had

>to go to the pediatrician and tell him I don't want my child given less

>screening because the medical field seems to think that because they are

>mosaic, they are at a lower risk.

>

>So there's my 2 cents... ::::wink::::

>

>Angel,

>Mom to , MDS/Hirschsprung's Disease

_____

Send and receive Hotmail on your mobile device: Click Here

<http://g.msn.com/1HM505401/14>

[Guest guest]

Hi everyone,

All this reaseach about children with downsyndrome does seem to be old news

and also can be a worry to parents

Doctors i have spoken to know so little about our children as it's a

different form of downs syndrome (mosiac downsyndrome)

Lots of our children don't have any affects that are similar,or very few,

has had little problems surgery for a blockage at birth ok now and

slight asthma, not to cause her a problem if treated.

The best people are the parents who know there kids better than any doctors

i've had advice help etc but the doctors don't always know the answers,

Enjoy your child ! after all it's us who know just how capable our

children are and don't worry what may be ,because maybe don't always

happen, so why worry !

Judy mum to (age 9 mds ) who's life is a happy one

Re: Fw: The Urgent Need for Down's Syndrome Research

> >Date: Mon, 8 Apr 2002 13:02:55 EDT

> >

> >In a message dated 4/7/2002 8:21:58 AM Pacific Daylight Time,

> >masanda@... writes:

> >

> >

> > > Down's Syndrome is a progressive degenerative disease that gradually

> > > destroys the health of mind and body. Down's Syndrome seems to not be

> very

> > > serious when the children are young, especially if there are no

serious

> > > problems.

> >

> >If you ask me... LIFE is a progresive degenerative disease... we're ALL

> >getting a little closer to dying each day!!

> >

> >Not to say medical research isn't needed however, but I also have a hard

> time

> >fathoming that the majority of parents don't realize their child has a

> >degenerative medical condition. You don't just wake up the day you get

the

> >diagnosis, and KNOW how to be a parent to a handicapped child, and KNOW

> what

> >to expect for their future and know how you'll handle it. So support

groups

>

> >are important when they're young, it leads us to a better understanding

of

> >what to expect when they get older.

> >

> >If you ask me, this is also why we need to be more vocal about MDS. I

know

> >that my son wasn't getting the typical care that is suggested for Downs

> >children (ie, thyroid testing, etc) because he was mosaic, and I recently

> had

> >to go to the pediatrician and tell him I don't want my child given less

> >screening because the medical field seems to think that because they are

> >mosaic, they are at a lower risk.

> >

> >So there's my 2 cents... ::::wink::::

> >

> >Angel,

> >Mom to , MDS/Hirschsprung's Disease

>

> _____

>

> Send and receive Hotmail on your mobile device: Click Here

> <http://g.msn.com/1HM505401/14>

>

>

>

[Guest guest]

Judy,

I couldn't have said it better myself! Thank you for

your voice! And everyone who has responded to this.

Last week I went on a field trip with Tim to the

Medical and Science Museum of Houston. We were very

excited to be there as we thought we would learn new

things about genetics and this would further help me

in my studies. BOY, WAS I WRONG!!!! When the genetic

educator spoke about down syndrome, he said that ALL

people with ds have heart defects, get leukemia, have

Alzimers and die between the ages of 30 and 40. Boy,

was I angry! How can someone that is supposed to be

teaching about genetics be so wrong? I wrote a long

letter to the museum and am waiting on a reply.

There is an old saying.... " Don't believe anything you

hear and only half of what you see. " I remember when

Tim was first diagnosed with mds. A young mother with

a child with ds was overly paranoid and read

everything she could find on ds. I think we all read

all we can, but this mother believed everything she

read would happen to her child. She was petrified that

her child would get cancer and tried very hard to

convince me that it was all of our children's fate. I

had a moment of terror, but then I decided I am going

to enjoy my son and I am going to take one day at a

time.

Kristy

--- Judy Green wrote:

> Hi everyone,

>

> All this reaseach about children with downsyndrome

> does seem to be old news

> and also can be a worry to parents

>

> Doctors i have spoken to know so little about our

> children as it's a

> different form of downs syndrome (mosiac

> downsyndrome)

>

> Lots of our children don't have any affects that are

> similar,or very few,

>

> has had little problems surgery for a blockage

> at birth ok now and

> slight asthma, not to cause her a problem if

> treated.

>

> The best people are the parents who know there kids

> better than any doctors

> i've had advice help etc but the doctors don't

> always know the answers,

>

> Enjoy your child ! after all it's us who know just

> how capable our

> children are and don't worry what may be ,because

> maybe don't always

> happen, so why worry !

>

> Judy mum to (age 9 mds ) who's life is a happy

> one

>

>

> Re: Fw: The Urgent Need for Down's

> Syndrome Research

> > >Date: Mon, 8 Apr 2002 13:02:55 EDT

> > >

> > >In a message dated 4/7/2002 8:21:58 AM Pacific

> Daylight Time,

> > >masanda@... writes:

> > >

> > >

> > > > Down's Syndrome is a progressive degenerative

> disease that gradually

> > > > destroys the health of mind and body. Down's

> Syndrome seems to not be

> > very

> > > > serious when the children are young,

> especially if there are no

> serious

> > > > problems.

> > >

> > >If you ask me... LIFE is a progresive

> degenerative disease... we're ALL

> > >getting a little closer to dying each day!!

> > >

> > >Not to say medical research isn't needed however,

> but I also have a hard

> > time

> > >fathoming that the majority of parents don't

> realize their child has a

> > >degenerative medical condition. You don't just

> wake up the day you get

> the

> > >diagnosis, and KNOW how to be a parent to a

> handicapped child, and KNOW

> > what

> > >to expect for their future and know how you'll

> handle it. So support

> groups

> >

> > >are important when they're young, it leads us to

> a better understanding

> of

> > >what to expect when they get older.

> > >

> > >If you ask me, this is also why we need to be

> more vocal about MDS. I

> know

> > >that my son wasn't getting the typical care that

> is suggested for Downs

> > >children (ie, thyroid testing, etc) because he

> was mosaic, and I recently

> > had

> > >to go to the pediatrician and tell him I don't

> want my child given less

> > >screening because the medical field seems to

> think that because they are

> > >mosaic, they are at a lower risk.

> > >

> > >So there's my 2 cents... ::::wink::::

> > >

> > >Angel,

> > >Mom to , MDS/Hirschsprung's Disease

> >

> > _____

> >

> > Send and receive Hotmail on your mobile device:

> Click Here

> > <http://g.msn.com/1HM505401/14>

> >

> >

> >

[Guest guest]

Dear Kristy, My, that must have been oh, so pleasant for Tim to listen to also! Did you tell the ignorant genetics person that Tim was a living breathing child with MDS? That could have been very embarrassing for the "expert"! What is wrong with people? It is just like the museum did that write up 50 years ago when they opened, and they have never thought of updating it even though they HAVE to know that it is not true in this day!! I think you got to "hear" a dinosaur that day! Barb Martz Re: Fw: The Urgent Need for Down's> Syndrome Research> > >Date: Mon, 8 Apr 2002 13:02:55 EDT> > >> > >> > >> > >> > > > Down's Syndrome is a progressive degenerative> disease that gradually> > > > destroys the health of mind and body. Down's> Syndrome seems to not be> > very> > > > serious when the children are young,> especially if there are no> serious> > > > problems.> > >> > >If you ask me... LIFE is a progresive> degenerative disease... we're ALL> > >getting a little closer to dying each day!!> > >> > >Not to say medical research isn't needed however,> but I also have a hard> > time> > >fathoming that the majority of parents don't> realize their child has a> > >degenerative medical condition. You don't just> wake up the day you get> the> > >diagnosis, and KNOW how to be a parent to a> handicapped child, and KNOW> > what> > >to expect for their future and know how you'll> handle it. So support> groups> >> > >are important when they're young, it leads us to> a better understanding> of> > >what to expect when they get older.> > >> > >If you ask me, this is also why we need to be> more vocal about MDS. I> know> > >that my son wasn't getting the typical care that> is suggested for Downs> > >children (ie, thyroid testing, etc) because he> was mosaic, and I recently> > had> > >to go to the pediatrician and tell him I don't> want my child given less> > >screening because the medical field seems to> think that because they are> > >mosaic, they are at a lower risk.> > >> > >So there's my 2 cents... ::::wink::::> > >> > >Angel,> > >Mom to , MDS/Hirschsprung's Disease> >> > _____> >> > Send and receive Hotmail on your mobile device:> Click Here> > <http://g.msn.com/1HM505401/14>> >> >> >

[Guest guest]

Barb,

Luckly, my son has an IQ of 110! lol He knew that they

were misinformed. He probly knows more about mds than

I do, and we just told him about it last September. I

really had planned to tell this man right there and

then that he was wrong, but we were ushered in to

another room where I was so fortunate enough to watch

them disect a sheep brain! LOL (still trying to get

past that one!) I am still waiting on a reply from the

museum. I also refered them to our web site.

Kristy

--- Martz wrote:

> Dear Kristy,

> My, that must have been oh, so pleasant for Tim

> to listen to also! Did you tell the ignorant

> genetics person that Tim was a living breathing

> child with MDS? That could have been very

> embarrassing for the " expert " ! What is wrong with

> people? It is just like the museum did that write up

> 50 years ago when they opened, and they have never

> thought of updating it even though they HAVE to know

> that it is not true in this day!! I think you got to

> " hear " a dinosaur that day!

>

> Barb Martz

>

>

>

> Re: Fw: The Urgent Need for

> Down's

> > Syndrome Research

> > > >Date: Mon, 8 Apr 2002 13:02:55 EDT

> > > >

> > > >In a message dated 4/7/2002 8:21:58 AM Pacific

> > Daylight Time,

> > > >masanda@... writes:

>

=== message truncated ===

__________________________________________________

[Guest guest]

Kristy, Thanks for not describing the brain disection in detail. I hope you can soon get it out of your head. I have only recently lost enough brain cells to forget most of the frogs and earthworms I had to do in high school and college! By the way, GO TIM! I am so glad he did not take offense, but I would have been very interested to know what that person would have said if Tim himself would have spoken to the genetics speaker! Barb Re: Fw: The Urgent Need for> Down's> > Syndrome Research> > > >Date: Mon, 8 Apr 2002 13:02:55 EDT> > > >> > > >>=== message truncated ===__________________________________________________