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Thread: Suggestions and experiences for Juvenile Scoliosis

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  1. #1
    Join Date
    Feb 2015
    Posts
    3

    Suggestions and experiences for Juvenile Scoliosis

    Hi all

    I am a father with 6 years old girl who was diagnosed with idiopathic scoliosis in march 2014. On June the orthopedist measured the angle and it was 20 degree. We were told just to wait and we scheduled the next visit on beginning of January. On January the curve was worsen to 25 degree and our orthopedist said that our daughter should wear a brace. On that moment was like we were the most unlucky people in the world. While we were driving back home we were without words. The problem is that we don't have orthopedist specialized in scoliosis in Albania so had to go in Greece. We ordered the brace in Ioannina and we arranged the visit with orthotist after two weeks. After almost one month we went in Greece to put the brace on and this day was even worse. Our daughter couldn't even breathe. She was walking like a robot. It was like a bad dream that would not never ended. The first two days were nightmare. She was crying,complaining. She could not sleep the whole night. After the first week things start to change. She started to get used with her new white friend. Now she has got some callus on the rib region where the brace tight her more. She feel some pain on axilla and hip region as well. Today is one of our happiest day. We performed an X-ray after 20 days wearing the brace and the correction was great,close to 0 degree.

    I am posting this because i need advises from other parents that have children diagnosed with JIS. How the scoliosis goes on with the years.
    Please help me your experiences.

    Dajl father of Ajl 6 yrs old
    diagnosed with JIS 20* on March 2014
    08/01/2015 thoracic 25 degrees
    05/02/2015 Boston-Cheneau 18 hours
    28/02/2015 X-ray with brace closed to 0*
    next scheduled x-ray w/o brace will be in 6 month

  2. #2
    Join Date
    Feb 2015
    Posts
    3

    Smile There is great improvement after six month in Brace

    X-ray taken six month after wearing brace.

    Dajl father of Ajl 6 yrs old
    diagnosed with JIS 20* on March 2014
    08/01/2015 thoracic 25 degrees
    05/02/2015 Boston-Cheneau 18 hours
    28/02/2015 X-ray with brace closed to 0*
    next scheduled x-ray w/o brace will be in 6 month

    24/07/2015 x-RAY taken 49 OOB, thoracic 13*, :-))
    next scheduled x-ray w/o brace will be in on 1year.
    In the mean time we have to visit the orthotist to check the brace.
    Height: 127cm
    Weight:25kg

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Hi Dajl,

    I am glad you posted about your daughter and I am sorry she and your family are dealing with this.

    There are not many parents on here with children who have JIS. I am guessing that's why nobody responded. My daughters had AIS which is very different so I don't know much about JIS.

    It is my understanding that JIS can respond to bracing but may not.

    Do you mean the in-brace x-ray is now 13* and the OOB is 49? Did you attach the x-ray to your post? What do the orthopedic doctors say about that? Do they have any other treatments besides brace?

    It must be hard having to travel to Greece from Albania for treatment. You are a wonderful father. :-)

    Good luck.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #4
    Join Date
    Feb 2015
    Posts
    3

    Improvent on JIS still go on

    Hi Poka1

    Thank you for your reply. I just see it now because i was not checking the website since nobody was not giving any suggestion.
    Last week we performed the x-ray which is one year after the last one. The doctor in Greece told us that till 7 years girls grow up fast and we had to perform an x-ray every 6 years. After 7 years the growth slow down and the x-ray should be taken every year.

    This time our daughter stayed 50 hours OOB(out of brace),performed an X-RAY, there was great improvement, 6 degree without brace.

    Replying to your questions,
    - 49 OOB means before performing the x-ray she didn't wear brace for 48 hours. Yes, out of brace it was 13*. Yes, i attached it and i will attach even the x-ray taken this year.
    - there is not any good orthopedic here that have experience on scoliosis. We don't have even orthotist.
    - our doctor in Athens said that except brace it is surgery as well but we will speak for that if the situation will precipitate.

    How is your daughter? I suppose it should be easier for your daughter since she is done with the growing, i mean she is not growing as before.

    Cheers.


    06/07/2016 x-RAY taken 50 hours OOB, thoracic 6*, :-))
    next scheduled x-ray w/o brace will be in on 1year.
    In Septmenber we will make a new brace.
    Height: 134cm
    Weight:26.5kg

  5. #5
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Hi Dalj,

    Yes I misunderstood. Your daughter seems to be responding to the brace or is improving on her own even though she is wearing a brace. There is a child mentioned on this group who has a similar JIS curve as your daughter's and the curve is resolving on its own... no brace and no physical therapy.

    I have two daughters. One was fused in 2008 and the other in 2009. They have normal lives and are in college.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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