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Thread: 5-month old baby with Idiopathic Scoliosis

  1. #1
    Join Date
    May 2005
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    3

    5-month old baby with Idiopathic Scoliosis

    Hi,

    I have been reading this Forum for the last weeks trying to get as much information as possible about scoliosis. When my daughter was 2 month old we went to the Pediatrician and I mentioned to him that I though my daughter was always leaning toward one side only. He looked at her and said there was nothing to worry about. For the next visit, 2 months later, I went again with the same story and the doctor again said there was nothing wrong with her. So I went directly to an orthopedic specialist who took x-rays and confirmed that Nikole indeed had idiopathic scoliosis. He measured a Cobbs Angle of 20 degrees. He said we shouldn't do anything and to come back in 3 months. During this last month I noticed that it was getting worse and that even though the curvature did not seem to increase, the ribs were "moving" as if the spine was rotating. So I went back to the doctor and he took another x-ray and measured 20 degrees again.

    I feel something has to be done. I am very concerned about the forget about it and come back in 3 months approach. Even though the measurements are the same a month later I am still convinced it got worse. I also asked him about the RVAD value and he said I shouldn't worry about that. From what I have been reading about Dr. Mehta's work, the RVAD is a very important measure to determine if it's going better or something needs to be done immediately.

    Sorry for the long post but I want to know what you think my wife and I should do.


    Thanks.


    Carlos

  2. #2
    Join Date
    Mar 2004
    Posts
    1,140
    Hi Carlos,

    Most scoliotic curves in the infantile group resolve without treatment - I've read numbers as high as 90 %. Even though 20 degrees doesn't appear to be severe - in a small baby 20 degrees can quickly progress IF it's the progressive variety. At this point you don't know the RVAD which is a very important number and if your daughter's curve is progressive, whether it's the malignant progressive variety or the benign progressive. Malignant progressive simply means that the curve is rigid and inflexible and benign is the opposite. You could do a side bending test on your daughter to see if the curve disappears. According to Dr. Metha, if a child has malignant progressive scoliosis, casting will work if the curve is caught below the 25 degree mark. If I were you, I would INSIST on the RVAD measurement for both x-rays to determine whether the RVAD is increasing. It's quite possible that the RVAD is in fact increasing despite the fact that the curve still measures 20 degrees. If your doctor refuses to give you this measurement, I would seek out a second opinion.




    Celia
    Last edited by Celia; 05-04-2005 at 06:08 PM.

  3. #3
    Join Date
    May 2005
    Posts
    3
    Thanks for your quick reply!

    I think my daughter has the benign type because the curve disappears when she bends to the opposite side. I also can with a little pressure "straighten" her spine when I am holding her.... and that is the reason I think if it is progressing a cast could stop this from getting worse. I will definetele seek a second opinion. I live in the Washington DC Area. Do you recommend anybody in particular? I really want to talk to somebody that is familiar with this. The doctor we went to see also mentioned that 94% of the cases get resolved on their own..... but from what I am reading most cases of infantile scoliosis are boys and the curve bends to the left. My daughter's curve goes to the right. No matter how I see it I am very very uncomfortable waiting to see what happens.


    Thanks again!



    Carlos

  4. #4
    Join Date
    Mar 2004
    Posts
    1,140
    Hi Carlos,

    I can understand your concern. I wouldn't worry too much about a right sided curve - it's not unheard of. I went into the SRS website and I found the following doctors in your area:

    Laurel C. Blakemore, MD
    Children's National Medical Center
    734-936-5780
    111 Michigan Avenue NW
    Washington DC 20010
    Adolescent, Juvenile/Infantile

    William C. Lauerman, MD
    Georgetown University Hospital
    (202) 444-7455
    Dept of Ortho Surgery
    S/B 3800 Reservior Road, NW
    Washington DC 20007
    Adolescent, Adult Scoliosis, Aging Spine, Juvenile/Infantile





    Celia

  5. #5
    Join Date
    Apr 2005
    Location
    houston,texas
    Posts
    11

    Carlos

    CARLOS,
    You sound like such a loving and concerned parent,your family is lucky to have you. You can apply or be sent an application by looking up Shriners on the internet. You can always get a second opionon and most insurance co. will cover it. The Dr.'s diag. my daughter at birth w/ scoliosis and said " you have to have a big enough baby to work with". So, now at 15mo. w/ a 67 degree curve ( + or - 3 degrees ) she will be wearing a brace for 3mo. Let me know if I can help w/ any ?'s, concerns, or if you need to talk or someone to listen. Take care.
    Megan
    megangilbride1@yahoo.com

  6. #6
    Join Date
    Mar 2005
    Location
    Kannapolis, North Carolina, near Charlotte
    Posts
    373
    I agree to contact Shriners. It takes a while to get an appointment with them, but they are free and you may decide like we did to switch to them for treatment. If so, you want to have plenty of time to get that first appointment early as possible. We went to an orthopaedic surgeon, decided on treatment, and then went to Shriners for a second oppinion. We decided to switch to Shriners for treatment, and are now waiting our turn in line. At one time, I debated looking at Shriners right away, but people convinced me to get a second oppinion anyway, and I'm glad I sent the application as early as I did. Wish you the best! Kris

  7. #7
    Join Date
    May 2005
    Posts
    3
    We went to another doctor for a second opinion and this time he measured the Cobbs angle and the RVAD. He also suggested to wait for now because she is too small and if needed he recommends serial casting.

    This doctor explained everything and had a complete different attitude. At least I know that he will do serial casting if necessary.

    Using the same x-rays the Cobbs angle measured 25 and the RVAD 5. The other doctor measured 20...... go figure.


    Waiting without doing anything is what is driving me crazy.... but I guess is the only option right now.

    These forums are great! I learned a lot and it is great to have people to talk to that understand what your concerns are!


    Carlos.

  8. #8
    Join Date
    May 2005
    Posts
    18

    Smile

    Carlos

    Your second dr. seems to know what they are doing which is great! In my experience (growing up with Ms Mehta as my Dr.) I believe that the RVAD measure is great as Ms Mehta used it for me on quite a number of occasions and so far nothing has ever been mentioned about surgery. (19 years and no surgery wow). Serial casting may come into play here in your daughters case but don't worry I was serial casted as a baby and child.
    Unfortunately waiting is the only option at the mo mainly due to age, and for visual purposes.
    Although serial casting amy sound like an awful thing at first once you see the results its well worth it and your dr wouldn't serial cast your daughter if it wasn't necessary.

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