Just saying Hello

Libby - posted on 11/09/2009 ( 4 moms have responded )

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Hi everyone!!It is so nice to have a place to come to whenever you have a question or need support about our daughters.My youngest daughter Shelley (5) was diagnosed with Turner Syndrome in August '08.It was actually a total shock but relief at the same time.Shelley has always had a few features that just seemed different.Such as her swollen feet to name one thing.When I took Shelley in for a yearly well check see saw a different peditrician that day.She asked me if I had ever heard of it.My first reaction was "OH NO A SYNDROME??!!?"She reaasured me everything will be ok and that Shelley will have a normal life.The most devastating thing she said was Shelley will never be able to have children.That did break my heart.So,we did the blood test and yep classic Turner Syndrome.That was folllowed by many specialist visits.She is now taking Nutropin injections daily for her growth.Tomorrow she will be seeing the endocrinologist for the 3rd time can't wait to see what and if any results from the growth hormone she has.So I consider it such a blessing for this.I know when Shelley gets older she will ask ALOT of questions but right now she doesn't even care.She doesn't look or feel different.Shelley has such a laid back personality I think she will be fine.So that's my story thanks for letting me share!

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Libby - posted on 01/18/2010

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That is so true Danielle.I have been told by alot of specialists that for Turner's Syndrome to be picked up at such an early age is very rare.Good for you for being on top of your daughter's health.Going through this with Shelley has opened my eyes with doctors and now I ask MANY questions!!

Danielle - posted on 12/19/2009

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That's fab news! My daughter is 2 1/2 and on the high line for Turner girls but low on normal scale, because we're tall. You're so lucky to have had a good paediatrician! Mine was soo clueless and when I kept going to him about concerns he called me paranoid-in a jokey way. So I got rid and the new one did a bloodtest after some nagging, and voila! It's nothing (until) they're older to be overly concerned about is there? But I have been reading up on behavioral traits and sleep probs, and it's really common in TS girls and we're not even made aware unless we research.

Michelle - posted on 11/28/2009

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WOW... that is great! Congrats! =)
My oldest daughter isn't growing quite as fast as my youngest. They actually had to lower her dose so she didn't grow too fast! It upsets Morgan a little that her little sister is catching up with her, but I've explained that all people are different shapes and sizes, no matter what their age or condition. She seemed to accept that, I just hate to see them upset. Hope your daughter continues to have success with GH!

Libby - posted on 11/14/2009

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update:Shelley went to the Endocrinologist and since May '09 she has grown 1.6 inches!!May is when we started the hormone therapy.So since her first visist in January '09 she has grown 2.6 inches!!Yaaaay Shelley!!

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