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Thread: Beautiful Taylor

  1. #1
    Join Date
    May 2005
    Posts
    3

    Beautiful Taylor

    I have a 9 month old little girl named Taylor who has just been diagnosed with infantile scoliosis. She has a 37 degree left thoracic curve. We are scared to death and just trying to get as much information as possible. I have been following this forum and it has been very helpful. I am trying to get more information on casting. We too have been told to wait and see.
    Are there any books or videos on this type of treatment that I can obtain?

    Very grateful for your help. Prayers are appreciated.
    Annie

  2. #2
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    Hi Annie

    I'd write lots more (I'm an infantile scoliosis baby who's all growed up :-), so I've got lots to say and lots of comforting words of wisdom), but it's very late in Australia and I should be in bed :-)

    Here's a couple of things that might be of assistance to you

    http://www.infantilescoliosis.org

    There is a video on Infantile Scoliosis called

    :INFANTILE SCOLIOIS - A NEW DIRECTION.

    which outlines the casting method pionerred by Min Mehta....I'm not sure how you get a hold of it (i know we can get it through our national association in Australia, but I don't know how to in other countries) but someone else could probably help you their

    Regards and Best wishes

    Alison

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Annie,

    Welcome. The website Alison posted will give you more info. Also, Heather (website owner) has a video she can send you about the casting method used. another place to find other parents with this casting experience is a Yahoo list infantile_scoliosis.

    Good luck and take a few deep breaths. Do you research. Everything is overwhelming right now, but you will get an emotional handle on her situation very soon, I promise.

    My best!
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  4. #4
    Join Date
    May 2005
    Posts
    3
    Thank you both!!

    I have been trying to get my hands on a copy of this video. Serial casting seems like the best solution. I am so surprised the orthopedic guys in the US are not more comfortable with it. We live in Philadelphia. We have been to Children's Hospital of Philadelphia, as well as AI Dupont Children's Hospital in Wilmington, DE. Next stop, Shriner's Hospital of Philadelphia. I am desperately hoping this will resolve itself but I want to be totally prepared if not. Shriner's seems to be the only place they are willing to do the casting. Everyone else keeps talking about bracing.

    I would love to hear your experiences. This site has been wonderful. I have gained so much knowledge from all of you. Any other words of wisdom or direction, I would be grateful. Our new house motto "grow straight, not bent!!". Created by my 4 year old, Hope.

    Thanks again! Annie

  5. #5
    Mary Lou Guest
    Annie,

    Since you live in Philly, have you thought about contacting anyone at the Penn State Hershey Medical Center in Hershey, PA? I'm not sure if they deal with infantile scoliosis or not, but the reason I suggest calling them, is that one of the options we were given for my daughter who was 12 at the time, was to cast her for six weeks (I know this is a little different than what you are talking about but it never hurts to ask) and then brace her in order to try and avoid surgery. If possible, ask for information about Dr. Lee Segal. Here's the main hospital number-(717) 531-8521 and ask for pediatric orthopedics.

    I just called Hershey and they told me to give you Dr. Segal's e-mail address and that way you can tell him what's going on with your little one and ask him any questions you have. He is an awesome man! His address is: lsegal@psu.edu. Let me know how you make out.

    Mary Lou
    Last edited by Mary Lou; 05-25-2005 at 10:46 AM.

  6. #6
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    If you didn't already know, Dr. Sanders at Shriners in Erie is one of the docs doing this form of casting on infants/young children. Since you are in the area (within reason) it may not hurt to contact his office and talk with someone about Taylor. Good luck!
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  7. #7
    Join Date
    May 2005
    Posts
    3
    Again, many many thanks for the advice.

    I have been praying for guidance and I think you both may be giving it to me.

    I just found out her RAVD is 32. I was not expecting that. I am desperate to make this all ok for this beautiful child. I am going to email the Dr Segal at Hershey and I will most definately check with Dr. Sanders.

    Thank you again for your kindness. It means more than I could ever tell you.

    Sincerely, Annie

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