Interesting article from the NYTimes....

http://parenting.blogs.nytimes.com/2010/01/11/should-down-syndrome-be-cured/

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Janet (43) and Jeff (43)
Joshua (angel) '85
Sarah-age 21
Jaret-age 4
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)






My Family's Website

Interesting - It sounds like what they are working on would not cure ds, but help with cognitive abilities. I would say no to a cure but if there were a way to prevent so many medical issues that would be something I might consider.

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (almost 2 - ds)
https://www.carepages.com/carepages/MarkEdwardC32708


"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa

Thanks for this article...very interesting. This is just my opinion, but I think they should leave it alone. I didn't like this part:

There are already drugs on the market that boost norepinephrine signaling. They are used to treat depression and A.D.H.D., and Salehi expressed the hope that his findings would soon lead to trials of such drugs on babies with Down syndrome.


My oldest son has ADD/ADHD and he has been on every drug out there for it with no luck with any of them. Yes they would work for awhile, but then they would stop. He is now drug free and we are seeing not so good results with his schooling, but we have a much happier kid. I didn't like what the drugs did to Brandon. They made him a diferent person. Brandon needs to be brandon and we shouldn't change a person by giving them drugs. A person is a person from birth. No drug should change a person.

I just don't think they should be messing with issues like this. If you need meds for health reasons thats one thing but not for this. Just my opinion.

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~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs )

The work being done at Stanford will not "cure" Down syndrome but will help people with DS with their cognition issues. This work is being supported by the Down Syndrome Research and Treatment Foundation, for which our family has done a huge amount of fundraising through the New York City Romp for Research. I don't believe Anna's personality or being are caused by DS but I want to do everything in my power to allow her to be the best Anna she can be and if medication could be developed that would aid her with cognition issues and enable her to lead and independent life I would give them to her. To me, it's no different than giving her glasses to help with her eyesight, hearing aides to help with hearing impairments or thyroid medication if she had low thyroid functioning. I think if I asked Anna, she would want to be as much like her typical friends as possible, including cognitively.

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Mary
Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

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Mary- I agree. Everytime I get frustrated with something Netanel would do, my friends will remind me of some of my other kids would did similar things. As far as the ADHD meds, I had one child who was on meds for a while. Finding the proper dosage is not easy but when you do it really helps. My childs personality was not affected ie:tamed at all. We still argued, his room was still a mess. These are not magic pills. They are meant to keep kids more focused, which it did. If I could have something like this to help my child "focus" & learn better, I would go for it in an instant. I guess my very possitive experience with ADHD meds gives me this perspective.

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Married ,Mommy to 8
girl 24 married with dd & baby boy 3/21/09, boy23 married with baby boy 11/30/08, boy 21, girl 18,girl 16, boy 13, boy 11, Netanel 4 with Down syn

That's probably it. My experience with meds hasn't been good and with that has turned me off to anything like that.

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~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs )

You wanna know how I really feel about it, after 10 years of trying to wrap my head around all of the things that DS has brought to my life, good, bad, and indifferent?
I'm just tired of people manipulating language to screw with my emotions. This is no "cure." It's titled that way to draw your attention to read it.
It's a good article. I liked it - it at least provides several different perspectives on the topic. I still felt emotionally cheated on by the introduction.
It also lumps all people with DS into the same basket. These approaches will help some, and not others.
I'm not pissed, just tired.
to quote Her Majesty Michel,
Namaste.

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Nature goes her own way and all that to us seems an exception is really according to order.
-Goethe

***DISCLAIMER**** The following post is my personal opinion and it is subjuct to change as life goes on..... please feel free to disagree. You won't hurt my feelings ONE BIT! As parents, we have to make the hard decisions in regards to our children's lives until they are able to make the decisions for themselves. *****

i didn't read the full article. I'm lazy that way. However, I have kept up with the research at Stanford. After my experience with Austin on meds this last month I found that his core personality did NOT change. He was still the same curious, mischevious, loving little guy we all know and love. But oh my goodness, hearing his voice saying intelligible words, understanding concepts, giving us full eye contact and attention was life changing for ME... for all of us. I would seriously consider the results of the research... take a hard long look at the long term effects of the meds and discuss with Austin (because I"m sure he'll be close to adulthood before anything is released) this option. The way his face opened up and you could see him absorbing the knowledge was incredible. And this research is promising much more than that.

The bottom line for me is what right do I have to deny Austin the ability to make choices for himself, create a life for himself, and be as independent as possible... just to keep him the way I like him. Shouldn't he have the right (like me) to make his own medical decisions... earn an life-sustaining income, have a career. While this is possible for some individuals with Ds... now. I'm not so sure that's attainable for Austin without the research coming out of Stanford.

I want the best for Austin. I want him to stretch his wings and leave our nest one day... as painful as that will be for me. I want him to have the same chance at life as his siblings. If it takes meds to make it possible ... okay. I don't regard that any different than a diabetic who needs insulin to survive.

The core personality will not change. Unless ... you believe the cognitive delays make the person.

As I said before, I know we won't all agree on this. I'm a firm believer in that nothing is left for chance... God is in control. Just as Austin was born my seventh child at a time they would operate on his heart defect (Tetralogy of Fallot) ... If he' been my 1rst child born 25 years ago, he would have died within 4 days ... they wouldn't have operated on his heart back then. I am glad he may even have an option of benefiting from this new research!

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Keep the Faith, Amy

Mom to Kristin (24) Jessica (22) Rebecca (19 ) Rachel (14) Sarah (12) Hunter (9) andAustin (5) Ds

With my experience of using medications with Mikey, I agree 100% with Amy.

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Tom

Dad to Beth (17) and Mikey (12 - Ds and PDD-NOS)
My Blog - Random Thinking
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Amy - You have a very good point and I agree wholeheartedly - I am so glad that your son is doing so well on his new meds - that's awesome!! I think as each of our children grow how we feel about what would and would not be good for them changes.

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Maureen - Mom to Daniel(21), Brandon(19), Jordan(13)PDD, Thomas(11), Carrie(7), Samuel(4) and Mark (almost 2 - ds)
https://www.carepages.com/carepages/MarkEdwardC32708


"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." Mother Teresa

I totally agree that "cure" is the wrong word, and it was only used to draw interest. I have no experience with ADHD meds or the like, but if I found out they would help with cognition, focus, make speech more intelligible, and ultimately lead to greater independence, without changing who my daughter (or typical son, either, for that matter) inherently IS, I would definitely consider them. I don't view this as any different than giving vitamins, or ginko, or anything else... and think each person has to weigh the pros and cons and make the best decision for THEM and THEIR family... It's a very personal decision, not one to be made lightly, but IMO, nothing wrong with deciding either way...

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Janet (43) and Jeff (43)
Joshua (angel) '85
Sarah-age 21
Jaret-age 4
Jacey-born 2/22/08 (dx w/ Ds 9/10/07)






My Family's Website

Wow, thanks for posting this article. I'm with Mary C on this one.... and I agree that "Cure" is the wrong word. There is no curing T21, but I want to do all I can to give Nova the tools she needs to do things her own way.

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I asked my 27 year old friend with Down syndrome what she thought about this - explained that I know there are things coming that will help cognition in people with DS. In her typical, lovely way she told me that basically people with DS have all different sort of IQ's, and in her opinion, personally her IQ was just fine, so she wouldn't think she would need something like that.

To me the issue isn't would I give her something that would help make her life easier (I would) it is more the question of what would I find appropriate - how much testing has to be done on the drug before I'm assured it is safe for her? How many and what sorts of side effects would be ok.

And too, I often think of what the world would be like if those cognition glitches were lessened for our kids? Would the headlines suddenly read "Down syndrome people cured by new drug?" (yeah, right.) Would the extra cognition make the sting of the prejudice against our kids be even more biting to them personally? Or would the prejudice go away if suddenly a larger part of the population of people with DS could drive, live independently and had an easier time balancing their checking accounts? Would typical people suddenly find it acceptable to date or marry someone with Down syndrome if they had IQ's of 100 vs. 70? Would the treatment be widely and affordably available? Or would there be haves and have nots?

This is the stuff that weighed on me when I read the article...

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violettesmom wrote:

Would typical people suddenly find it acceptable to date or marry someone with Down syndrome if they had IQ's of 100 vs. 70? ...

People with schizophrenia and epilepsy get married these days and have children. So, yes, this is likely to happen in the future for people with DS. A DS person with an IQ of 100 would be a good bet - solid, reliable, cheerful

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