Connections » General Discussion

1-year-old with a radial club hand

(4 posts)

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  1. Yshin
    Member

    Hi, I've looked around on the net to see what kind of support groups there are before but this is the first time I actually post anything...

    I have a 14 months old baby girl who was born with a radial club hand. She's already had the first surgery (radialization) in Feb/09 and is scheduled to undergo another one this fall to create a thumb. (Her club hand is Type IV with no radial bone/no thumb)

    My questions are 1) Should she be receiving occupational therapy at this time? She's wearing a splint most of the time during the day and always at night but her fingers still seem to be stiff (I massage her fingers after her bath and try to exercise them a little but she resists quite a bit and I'm not sure how effective this is.) 2) Have you or your child had policization? How was the progress afterwards?

    I understand that every child is different but would still like to hear about your experiences. I don't know anybody with this condition and doctors seem to have varying opinions about 1)...

    Thank you,

    Yuki

    Posted 4 years ago #

  2. Dr. Wint
    Moderator

    Yuki,

    Often fingers in this situation can be stiff. First the radialization or centralization can increase the tension on the muscles and tendons to the fingers. As the hand/wrist/forearm "straightens" it effectively lengthens with respect to the tendons causing increaed tension and stiffness. Second the fingers may just be stiffer to start with. Radial club hand is really radial hypoplasia and with a hypoplastic or missing thumb the fingers themselves may be hypoplastic too. What you are doing for her fingers should be adequate, formal ot is unlikley to add anything at this time. But you may want to talk to your surgeon or even see an ot one or two times who is experienced with this type of hand to learn what exactly is acceptable to do on your own. You likely can passively flex and extend them on your own but remember the stiffness may not be fully correctable.

    Posted 4 years ago #

  3. Yshin
    Member

    Thank you Dr. Wint! I'll follow your advice and talk to our OT.

    Posted 4 years ago #

  4. ceaton
    Member

    Dear Yuki,

    My name is Caroline Eaton and I am a patient of Dr. Dror Paley. He is one of the world's most experienced surgeons specializing in deformity correction. I want to direct you to his new orthopedic educational site where he discusses the advances that that he has made in the treatment of Radial Club Hand. www.limblengtheningdoc.org

    I did not discover Dr. Paley until I was 25, but my life has changed drastically ever since. His surgical skills are unmatched. I will be having my fourth surgery by him this summer. Please feel free to contact me at ce@lengthening.us if you have any questions.

    Posted 4 years ago #

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