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Post by PaigesMom on Apr 20, 2011 18:06:23 GMT -5
Chris - beginning of puberty. Trust me on this one.....
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Post by PaigesMom on Feb 6, 2010 23:42:11 GMT -5
Hi Kathy - if you click on my screen name PaigesMom (it's blue), you'll see right at the top of the next screen "send personal message". It's almost like email. Then after you login, right at the top right hand corner you will see "messages"...click on that and it will bring you back to the message box. Paige was diagnosed when she was 7 ish, but probably had it long before that. Also, benign hypermobility joint syndrome - symptoms are very similar to JRA - hard to differentiate, also check "Down's arthritis" - not a great politically correct term, but that's what the medical profession calls it.
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Post by PaigesMom on Feb 6, 2010 16:15:03 GMT -5
Hi Kathy - yes, my daughter also has DS and polyarticular JRA. She was diagnosed 11/08. You can reply to this thread or pm me and I can try and be of some help to you. THANKS Bob for bumping these - I knew something was up somewhere when I went to the general forum and saw my original post bumped.
Debbie
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Post by PaigesMom on Aug 19, 2009 14:16:44 GMT -5
Hi Guys - thanks again. Chris, thank you..... That being said, I think there is alot of confusion about my question to you all. This has nothing to do with HGH - at all. I am not considering giving her HGH. This is about delaying puberty so SHE continues to make her own HGH. Once girls get their period, they only have about another 1-2 inches of growth. The doctor was suggesting that I DELAY puberty because:
A. She will grow taller B. She may not be emotinally ready for it....
I hope that clears up and does not cause more confusion!!!
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Post by PaigesMom on Aug 18, 2009 12:00:41 GMT -5
Hello and thank you all for your comments.
Carolyn - I am not concerned about her height. In fact, I never gave it a second thought until the endocrinologist said something about it. They are under the impression that she will have a more healthful and productive life if she is taller. According to them 4'7" tall as an adult is not healthy, even for a person who has DS and will be generally shorter. This all new to me and I'm trying to process it and figure it all out!
Kristin - now that is just the opposite of what mine told me. He said he would not do growth hormones, but delay puberty instead. He said growth hormones have alot of nasty side effects and health risks, so better to allow her to use her own growth hormones to grow.
A. - I'll send you an email.....
Thanks again!!!!
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Post by PaigesMom on Aug 16, 2009 22:41:49 GMT -5
I am very interested in hearing all of your opinions on this, as I weigh it over in my own mind. The deal is, I do nothing, or use Lupron to DELAY puberty and allow her own growth hormone to allow her to continue to grow until 4'10 and then take her off so she goes thru puberty and hits an adult height of 4'11 or 5'.
I understand height is not the end of the world, however my physicians are saying for health reasons (obesity) and to be able to participate in sports, etc., they feel strongly I should give her the best shot to get to 4'11".
Thanks!
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Post by PaigesMom on Aug 13, 2009 20:17:32 GMT -5
Hello...couple of questions for moms of older kids!
First - how tall is your post-puberty daughter?
Second - did any doctor ever tell or suggest to you that you use the drug Lupron to delay puberty to allow more time for growth?
Third - if any doctor did suggest that or would suggest that, would you consider it.
If your child is 4'8" or 4'9" - do you think it affects their life?
Thanks for everyone's response....in advance....
Debbie
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Post by PaigesMom on Jul 28, 2009 8:11:03 GMT -5
I think the ARC of the United States also changed it's name to just that, and removed the mental retardation portion and replaced it with intellectual and developmental disabilities. I think they still refer to people with mental retardation, as a medical diagnosis though. I'm pretty much with everyone else on this. It does not offend me as long as it is used in the correct context.
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Post by PaigesMom on Feb 24, 2009 14:13:09 GMT -5
Jackie/Jesse:
Do you think this book is appropriate for parents of younger kids too? Or is it more geared towards adults?
Debbie
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Post by PaigesMom on Feb 13, 2009 11:10:08 GMT -5
Jackie - what is the error on the blank page? Can you google the error message? Do you use Internet Explorer - is it an IE error or a Facebook error?
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Post by PaigesMom on Feb 12, 2009 12:04:56 GMT -5
Did you get a Window's upgrade - you know those automatic updates thingy's before you left, last time you logged off?? I can't stand those things, they always give me problems.
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Post by PaigesMom on Jan 28, 2009 16:16:55 GMT -5
Aww, so sorry to hear of your loss. Toby is at peace...
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Post by PaigesMom on Jan 28, 2009 16:15:15 GMT -5
Prayers....
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Post by PaigesMom on Jan 28, 2009 16:13:55 GMT -5
Wish you guys lived closer, I'd have her come display at our Buddy Walk!
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Post by PaigesMom on Jan 18, 2009 16:21:12 GMT -5
A. is really right on that one - we get the wash hands, flush, wipe thing here, but some days there's alot of prompting that goes on with that - Paige did you wash your hands, "yes mommy" or "oops, I forgot".....but I get that w/my typical son too. And wipe properly, wellll on both accounts too......LOL....however, I get what you are saying Jennifer, and I'm still going to stick with letter "C".
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