Re: Re: Fw: DS Clinical Trials- From Dr Craig Garner

[Guest guest]

so you are in support of research? I am confused now ;-) You are always very negative regarding it, both on here and in private, so sorry if I was confused on that issue,And I never said any of those things about you.... ( the stuff you stated below) Carol in IL AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me. Join our Down Syndrome information group - http://health.groups.yahoo.com/group/DownSyndromeInfoExchange/ Listen to

oldest dd's music http://www.myspace.com/vennamusic----- Original Message ----To: DownSyndromeInfoExchange Sent: Monday, July 7, 2008 9:56:40 PMSubject: Re: [DownSyndromeInfoExchange] Re: Fw: DS Clinical Trials- From Dr Craig Garner

please quote me on where I said that research shouldn't be supported! That is what gets me when this is discussed if anyone thinks differently then they are assumed to not want research or not want their child to learn or grow why is that? Why can't I think differently without being assumed I don't want research and I don't want my child to receive help? I'd also feel the same way if it was about something else going on other than cognition. But I guess I"m just a bad parent who doesn't care right?

In a message dated 7/7/2008 10:53:53 P.M. Eastern Daylight Time, ps1272000yahoo (DOT) com writes:

most people with DS do get benefits though. And, not to blunt, if a person didn't get a med and died, it would cost medicaid less... but not to give a person a drug that would take them OFF medicaid, would be counter productive.Course I do realize we *are* talking about the govt here.... <g>I don't really see that as a valid reason not to support the research though....

Carol in IL

AIM doihavtasay1 GigaTribe doihavtasayMom to seven including , 7 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, and DS.My problem is not how I look. It's how you see me.

Join our Down Syndrome information group -

http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/

Listen to oldest dd's music http://www.myspace. com/vennamusic

Re: [DownSyndromeInfoEx change] Re: Fw: DS Clinical Trials- From Dr Craig Garner

sorry but you are assuming everyone has insurance of some kind and sadly that just isn't always the case. I personally do not have insurance and I know many, many people in the same position I am in. And medicaid doesn't pay for a lot of meds that can be beneficial to people because of the high cost of the meds. I know this because it refused to pay for a needed medicine for my sister when she was on medicaid.

In a message dated 7/7/2008 10:47:47 P.M. Eastern Daylight Time, ps1272000yahoo (DOT) com writes:

I do think insurance would pay, so would Medicaid because it would cost them less in the long run.

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Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hey everyone, I think it is getting a little mean in this latest

exchange......sorry I know I am not the moderator, but I just read all

these emails at once and yikes (!!) I could feel the tension.

Of course we are all doing what *we* think is best for our children.

Some of us may give supplements others not, but at a minimum we need to

have respect for their opinions. I do not think any of us plans to run

out and get the latest *craze* drug to give to our children without

doing research. I do not think you will find one parent on this list who

would say to another from the list that they don't care about their

child. We all care or we would not be on this list in the first place

seeking advice, support, help and encouragement for our children.

What we really need to do is be supportive of one another whatever path

we choose.

" nough said....

Caroline

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[Guest guest]

I agree,

That is what I was trying to say Last week.

Disagree but do it in a respectful way. I would think the list owners would know that

and ask that everyone try and respect what others have to say and disagree in a nice way with out lashing out at each other.

Carol

Subject: Re: [DownSyndromeInfoExchange] Re: Fw: DS Clinical Trials- From Dr Craig GarnerTo: DownSyndromeInfoExchange Date: Monday, July 7, 2008, 11:18 PM

Hey everyone, I think it is getting a little mean in this latest exchange.... ..sorry I know I am not the moderator, but I just read all these emails at once and yikes (!!) I could feel the tension.Of course we are all doing what *we* think is best for our children. Some of us may give supplements others not, but at a minimum we need to have respect for their opinions. I do not think any of us plans to run out and get the latest *craze* drug to give to our children without doing research. I do not think you will find one parent on this list who would say to another from the list that they don't care about their child. We all care or we would not be on this list in the first place seeking advice, support, help and encouragement for our children.What we really need to do is be supportive of one another whatever path we choose."nough said....Caroline> .> >

[Guest guest]

I also want to appoligize for any comment tht was considered rude and out

of line. I read many of the posts but just dont have the time to respond.

Many of you might not know but I am a RN and am currently working on my

BSN. I will graduate in December. My ultimate goal is to get my ARNP in

work with special needs children. My Master's topic in DS.

Marsha, my son is 27 with DS and I am HAPPY to share anything I can with

> others. I am also happy with ANYTHING anyone wants to share with me. So

> anyone who wants to share just let me know. I am in a suburb of Chicago in

> Illinois.

> Shirley

>

> Marsha Scheitlin wrote:

> I do also and I apologize for the use of the word " apathy " . Many

> parents that I know have been very informed with fundraising for the

> Buddy Walk and social groups. Many are much more strong in advocacy

> when it comes to IEP's, etc. My personal interest and focus has

> always been on how I can help my child, not on how I can convince the

> school system and others to value him. For years, I have researched

> this or that trying to find ways to address the cognitive issues. I

> don't understand the lack of interest in doing so. Different strokes

> for different folks. Some of these parents have strengths that I

> don't have. It seems that parents with DS can be very suspicious of

> each other and scared to discuss what we are trying with our kids. I

> often feel more freedom in discussing these things with others than

> with parents of children with DS. It almost seems " taboo " to discuss

> it, swept under the rug. It's probably just a lack of interest..

>

> In my experience, parents of children with Autism are much more

> aggressive in seeking treatment. One gentleman told me that he spent

> $15,000 last summer for his son and that he would do anything for him.

> Maybe I have just ran into the right people, but I have encountered

> this type of attitude various times. Again, this is my opinion.

>

> Marsha

>

>

>>

>>

>> Subject: Re: [DownSyndromeInfoExchange] Re: Fw: DS Clinical Trials-

> From Dr

>> Craig Garner

>> To: DownSyndromeInfoExchange

>> Date: Monday, July 7, 2008, 11:18 PM

>>

>> Hey everyone, I think it is getting a little mean in this latest

>> exchange.... ..sorry I know I am not the moderator, but I just read all

>> these emails at once and yikes (!!) I could feel the tension.

>>

>> Of course we are all doing what *we* think is best for our children.

>> Some of us may give supplements others not, but at a minimum we need to

>> have respect for their opinions. I do not think any of us plans to run

>> out and get the latest *craze* drug to give to our children without

>> doing research. I do not think you will find one parent on this list

> who

>> would say to another from the list that they don't care about their

>> child. We all care or we would not be on this list in the first place

>> seeking advice, support, help and encouragement for our children.

>>

>> What we really need to do is be supportive of one another whatever path

>> we choose.

>>

>> " nough said....

>>

>> Caroline

>>

>> > .

>> >

>> >

>>

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>

>

>

>