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Thread: My son

  1. #1
    Join Date
    Apr 2007
    Posts
    2

    My son

    Dear everybody!

    Im so glad, that i found this forum - not because your children has problems to, just because i know now, that im not allone with the problems of my son. The doctors in our contry - i dont think i can trust them, they realey dont know much about it, and as i read here, there are doctors who can help.

    I was in 34 week of pregnancy and my gynekologist sad that maybe is a polyhidramium in the placenta of the fetus, i went to the universty hospital and they established coarctation of aorta and one kidney. Alex was born 4 weeks lather, the heart was ok, the kidney is working ok.

    At age 4 mounth i noticted a bump on the back - i rusht to the pediatric and she sayd - dont worry, it will passt. Well i tried not to worry about one month, than we went to a frend, who is a doc - the x ray reveld scoliosis
    (6 month 40 degree Thorax 11). And the internet helpt me to understand the correlation.
    After that we had 2 chekups- 10 month 40 degree, and now 15 month 46 degree (the first time that he was standing by taking the x ray).

    I asked the doc if the neck is ok - it seemt to me, that it is short - hemivertebra 3 and 4, but the axis is straight.
    He prescribt a brace, for 5 month and than chekup, if wouldt it be worse than surgery. I dont..........


    From the age 11 month i noticed that hes metopic sutur on the forehead is comming bigger. It s like he had a bump. The ortopedic said - nothing special.

    I have enough of "dont worry..."

    I realy need a doctor, like Camilla is repeating hole the time, who would look him completly, not just the spine...

    Please help me, please answer to my request, is there any clinic in Europe- near Austria perhaps, if ther are not, im willing to take my boy to the USA.

    Dear Camilla, the Shriner hospital - would they hospitalize a little boy from EU??

    I couldnt find any correlation between the scoliosis and metopic suture on the net. Have anywhone a clue??????


    Many thanks for your help in advance

    Sorry for my english

  2. #2
    Join Date
    Aug 2006
    Posts
    369
    I do not have any answers for you but I am sure you will get plently of info here. I want to say keep going, keep searching, do not be complacent and just go with the doctors. If I had done that my daughter would most definatly need surgery.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  3. #3
    Join Date
    Jan 2007
    Location
    Ontario, Canada
    Posts
    140
    Consider Paris, France
    My sons doctor came from there and he is excellent but now practising in Canada. I believe he did his training in the childrens hospital in Paris and I believe they are very big there for scoliosis. I have no idea how easy it is to get in to see them but might be worth a try. Good luck to you and Alex. And keep searching for the best treatment.
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

  4. #4
    Join Date
    Jan 2007
    Posts
    65

    Doctors

    Akire,

    I'm sure that you can find suitable doctors in Europe, but you will probably have to do some research on your own. There are many people here from the UK who seem to have had good doctors.

    Regarding Shriners, I have no doubt they would accept your son and treat him if this is what you wish. The Shriners we use always has many patients from other countries and so I'm sure this would not be a problem. You can investigate more about Shriners and how to apply for services at www.shrinershq.org.

    Hope this is helpful.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  5. #5
    Join Date
    Apr 2007
    Posts
    2

    dear

    Many thanks for your quick replay and good wishis.

    Scoliboymom - you have now in may the surgery? If i dont ask to much - what is the correct problem, have your child other abnormalitis - kidney missing etc. If you dont answer, i understend.

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