Cure for DS????

[ooginal]

In one of the other posts, I read about an Uno Mas member who ran into someone in public who said to them a cure for DS had been found.... Not long ago, I read a newspaper article in which the author very ignorantly made this announcement when referring to the DS/Aricept study... Having a son who completed this clinical drug study (which is on going) I was shocked to hear how some dummy misconstrued an ongoing study for a cure..... The study is hardly over, the results not in, and the findings have not been announced.
Duke University is heading up the Aricept/DS Study...
Besides our personal experience with Aricept, we are also in contact with two other families that had a child involved in the same study... The bottom line was that all 3 families felt that Aricept did moderately improve their childs cognitive skills. However, it is no miracle drug and certainly not a cure....I'm afraid that the person who wrote that article didn't have nearly enough facts and unwisely and very incorrectly told the WORLD that a cure had been found..... Since taking Aricept, Daniel is more alert and more likely to challenge things that don't seem right to him... He does listen better and we have been surprised and proud to hear him use words and sentences he would not have normally used prior to taking Aricept... Keep in mind that Aricept has not changed Daniel in a very substantial and dramatic way....but, we are happy and grateful for the improvements we have seen.... Aricept... has a number of potential side effects...Danny has experienced several of them...He can be mouthy (smart alec).......Pror to taking Aricept, he was never mouthy and always respectful... For example: 2 hours after taking his very first pill, I asked him where his Mom was, and he said "she's taking a leak"..... He NEVER EVER would have said that prior to popping his Aricept... The other day he was talking to his sister on the phone and called her two boys "Cain and Abel"
He didn't hear that from us - I'll tell you.... I call them Osama and Hussein...but never Cain and Abel....
So, the attitude might have come from me but the choice of words he gets all the credit for.... He has more trouble sleeping since the study...averaging about 2 hours less sleep a day and he complains about weird dreams...when I ask him to tell me about his dreams they don't seem weird to me at all...I just think that the Aricept causes him to remember his dreams after he wakes up.... So, this kind of lets you know where we are with Aricept and why some people out there think a cure has been found for DS...... Bob, Danny's Papa, in South Beach, Oregon

[wrblack]

Cure? Not yet, and I don't see one on the horizon. I'm not sure there will ever be a cure, though I'm planning for Robert to grow up, get an MD specializing in genetics and a PhD in microbiology, and write the book "Causes, treatment, and prevention of trisomies in humans," for which he, of course, should win a Nobel. Still haven't found time to discuss this career plan with him, but hope there's plenty of time, he's not 11 months old yet and should be barely 8 months old.
Unfortunately, the only "cure" medical science can offer at this time is prenatal diagnosis before 24 weeks gestation followed by elective termination of the pregnancy.
But there's some interesting research going on to find efficacious and safe treatments of some of the more troubling effects of trying to live life with that extra 21st chromosome. I think a couple of the more interesting programs are those of Dr. William Mobley at Stanford and Dr. Alberto Costa at the Eleanor Roosevelt Institute of University of Denver. There was a column in the April 26 Denver Post about Dr. Costa, but unfortunately can't find a working link to that now. Here's a link to the Institute, www.nsm.du.edu/eri/lab_costa.html And there's an interesting discussion of the Institute's research at www.mhdsa.org/Research.htm
And here's a link to Dr. Leshin's page describing Dr. Mobley's work, www.ds-health.com/abst/stanford.htm
I, for one, wish these and all like researchers well. I'm not really worried that there won't be anything left for Robert to do 20 or 30 years from now. And, of course, I don't know if he's going to have any interest in my career plan for him. Early days when he was in NICU and still on bubble CPAP, chatting with the obstetrician who had delivered Charlie under similar circumstances four years earlier and discussing this plan, she observed that that might be all well and good but I should still be happy if he grew up happy and healthy and became a ballerina. Quite intelligent, wise, and discerning for a mere obstetrician.
Another Bob, dad to Charlie (Ds) home.earthlink.net/~wrblack/ and Robert (w/out Ds) home.earthlink.net/~wrblack/robertsphotoalbum/

[DereksMom]

Is that 3rd 21st chromosome just supposed to miraculously disappear and our kids will be normal in the blink of an eye??

Hugs

Allison

[christie]

Obviously there is no cure for DS now BUT I for one am for any studies that may hopefully one day find a cure or prevent, just as I am for any studies that will one day elimate cancer, MS, CP, Diabeties (sp) and the list goes on.

K, no bashing but I have to say if there were a cure today for DS would I get rid of Christopher's DS, You bet ya in a heart beat.

CC

[Emilysmom]

Allison~ No, Aricept is certainly not a CURE for Ds and it is incapable of changing anything related to the 21st chromosome. It is widely used in patients with Alzheimer's disease to slow the progression of the disease. This study has indicated that it has positive side effects for persons with Ds......most especially related to speech........increased vocabulary and intelligibility. I've been interested in this study because speech is Emily's biggest delay. She KNOWS so much that she struggles to convey to us. And I see her getting more and more frustrated by trying to get us to understand her words. IF this drug can truly help......and the negative side effects are shown to be few, I might even consider it. But, it will not ever be a CURE for Ds......just something to help our kids achieve their highest potential, I think.
Susan

[Jackie]

We thought about joining this study...Ed gets all sort of professional medical literature on DS...but decided the side effects if she had them...might interfere with what is already a nice life for Emily. I AM interested, though in hearing the results of those in the study...and we have thought about doing it.....but wouldnt do it to look for any miracles...I think most of us would like to improve life for our kids if we could....but I have to be convinced it would enhance Emily's life for HER...not just have benefits that would make me feel better ABOUT her....I think its brave of those parents who opted for the study so we all will have a chance maybe someday at enhancing our kids lives. When it comes to side effects I am referring to the time we tried an anti depressant with Em in her adolsescence and it made her edgy...her hands shake...and affected her sleep...it just wasnt worth it...and we finally decided her withdrawn and negative attitudes were just a delayed function of going thru puberty....and I think we were right.

Jackie mom to Emily 24