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Thread: New here and kindly asks for help

  1. #1
    Join Date
    Aug 2007
    Posts
    1

    New here and kindly asks for help

    Hi everybody,

    I have mother of Anna Marie who is 2 years old right now, and has congenital scoliosis. I am so happy that I found this web page and the forum, beacuse I am from Estonia, so far from US and our country is tiny little spot in nothern Europe with 1,5 million inhabitants. So You can imagine that the diagnosis congenital scoliosis is really rare in our country and the knowledge about the diagnosis is very small. We have only one surgeon who perfoms spinal operations in children's hospital, but he has not performed a surgery to a child who is under age 10 .
    I would really like to have second opinion about my child's condition in some other hospital and in some other country, where the congenital scoliosis is treated successfully earlier. US is too far but I am sure that also in Europe, there are children's hospitals and doctors who are very familiar with the diagnosis
    I would be very grateful and happy if You could help me in finding those doctors and the place where I could find the right answer to my child.
    Thank You for reading and understanding,

    With best regards,

    Elis

  2. #2
    Join Date
    Oct 2007
    Posts
    99
    Hi Elis,

    I personally can't help you, but many here can. People may not see your post here. Post again...go to the "parents and family" section. Then go to "idiopathic", then go to "infantile". You can read a ton of information. Post your situation again there. Believe me, you are absolutely not alone!! Others have walked this path and have a lot of valuable information for you. There are many docs and facilities that can help your child!!

    I wish I could help you more, but my situation is different from yours and I wouldn't feel right about offering my advice when I am not travelling that exact same path.

    Best to you,
    Stephanie
    Mom to Michela ~age 12 ~VBS @ age 9 - 12/19/07 26* to 1*
    10/8/08 ~ curve is immeasurable!!
    07/16/09 ~ a few degrees overcorrected... being monitored
    12/28/09 ~ 14* overcorrected to the right
    2/23/10 ~ 12* overcorrected
    3/12/10 ~ Boston Brace at night to prevent further overcorrection. In brace corrects to -8*

  3. #3
    Join Date
    Oct 2007
    Posts
    99

    Smile

    Hi again,

    when you go to the infantile section of idiopathic scoliosis look at the post named..."Doctors who cast infant/young children for progressive infantile idiopathic scoliosis." It has a long list of very prominent doctors who can help your daughter!! Phone numbers and everything. Thanks to Celia!! Who took the time to compile this list.

    As I said, many here will help you.

    Best,
    Stephanie
    Mom to Michela ~age 12 ~VBS @ age 9 - 12/19/07 26* to 1*
    10/8/08 ~ curve is immeasurable!!
    07/16/09 ~ a few degrees overcorrected... being monitored
    12/28/09 ~ 14* overcorrected to the right
    2/23/10 ~ 12* overcorrected
    3/12/10 ~ Boston Brace at night to prevent further overcorrection. In brace corrects to -8*

  4. #4
    Join Date
    Mar 2004
    Posts
    1,140
    Aww....thanks Stephanie!

    Very few doctors refer to early onset scoliosis as congenital meaning the child was born with scoliosis but actually when the term congenital is used it refers to structural vertebral anomalies which unfortunately can't be corrected with casts. Often times what happens with congenital scoliosis is a watch a wait scenario and hopefully everything stays balanced and surgery is avoided but unfortunately that's not always the case especially when it's detected at an early age. Congenital scoliosis is so varied and can affect any part of the vertebral column that it's difficult to say which surgical approach will work best.

    I would suggest checking out the veptr site:

    www.veptr.com

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

  5. #5
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,801
    You can find a list of specialists here:

    http://www.srs.org/directory/directory.asp

  6. #6
    Join Date
    Aug 2004
    Posts
    152
    Here's another forum specializing in infants.

    http://www.infantilescoliosis.org/

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