Special Needs

Turner's Syndrome

Does anyone know anything about this?  We went in for DD's 9 month appt. last night and her pedi referred us to a geneticist for further testing as he thinks she is showing several of the symptoms.  I'm reading the info he gave us and freaking out over the risks for heart and kidney disease.  Obviously we'll get more info when we meet with the specialist, but does anyone know what kind of extra care she would need or what happens after diagnosis?  I'm praying she won't have it, but trying to prepare for the worst.  Thank you so much.
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Re: Turner's Syndrome

  • I posted to you on 6-12 but wasn't sure if you'd see it since that board moves so fast.  I have turner's syndrome and while it does have it's challenges I have had no serious issues beyond the infertility thing.

    Feel free to ask any questions or pm me.

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  • I don't know anything about Turner's syndrome, but try not to google yourself sick over it!  Checking for a diagnosis is hard, but try to keep positive!!  You're in my thoughts and prayers!

    She's definitely a cutie!!!

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  • My DD is 3.5 yrs old and she was diagnosed with TS at birth.  She has heart defects and has had a couple surgeries for the heart issues.  The initial diagnosis was pretty devastating, so I can relate to what you're feeling.

    I'm wondering what features your ped noticed?  Your DD is adorable.  Hang in there.  PM me if you have any questions or if you just want to talk. 

    DD1
  • The main feature that set off a red flag is that she has very swollen feet and hands (the hands to a lesser degree - I know there is a technical term for this, but I forget it).  This has been present since birth.  Her size has been a concern as well...she isn't evenon the growth charts.  At her appt. on Thursday, he said he noticed that she has a broader chest with wide spaced nipples and lower set ears and hairline.  But, he did say that these features are very subtle (except the swollen feet and size) so we're hoping these are just her natural features and don't necessarily mean something is wrong.

    We had the bloodwork done on Saturday...we should know the results in 7-10 days, so I'm just trying to remain calm until we know for sure. 

     

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  • I?m glad that your doctor suggested the bloodwork to be certain.  My DD has all of the features you?ve mentioned, except for the low hairline. 

     

    I hope you get good news.  I?ll keep my fingers crossed for you, hang in there.

    DD1
  • With regard to the swelling in the hands and feet, has your DD been seen by anyone knowledgable in the management of lymphedema (which is common with Turney's Syndrome)?  My DS has lymphedema and we have had a difficult time getting to the right resources but have finally found Drs and therapists that we like.
  • My niece has Turner's Sydrome, but had major heart issues at birth requring surgery. She is a very normal 12 year old! So don't worry too much about it. I know easier said than done.
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