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Thread: New Here - In Michigan - need help

  1. #1
    Join Date
    Feb 2009
    Posts
    1

    New Here - In Michigan - need help

    Hello everyone! First I want to say how happy I am to have found
    this group. I have heard nothing but good things so I'm glad to be a
    part of it. Now, onto my situation. My 8 month daughter was just
    diagnosed with infantile scoliosis on Friday. Originally we were
    told her degree was 18, but after luckily getting into see a
    pediatric orthopaedic yesterday her degree is really in the 30's. He
    said the original xray wasn't a good one. Anyways, to our shock
    about discovering this and then being told it was a lot worse than we
    had thought I need help. I've been researching like crazy. I've
    been told that thus far her's is idiopathic and progressive. Her
    RVAD was 26. The dr we saw yesterday is through Beaumont in Royal
    Oak, MI. He's scheduled an MRI for her next Friday to rule out
    anything else. I did like him and he was very informative,
    compassionate, etc. We have another appt for another opinion with a
    dr at U of M in Ann Arbor, MI through Mott's. I also have 2 more
    appts set up for a Dr at Providence in Novi, Mi and a dr at
    Children's in Detroit, Mi. All of them are pediatric orthopaedics.
    I guess my concern is do I try to go to one of the dr's associated
    with a children's hosp since they specialize in children specifically
    or do I go with the one we saw yesterday associated with Beaumont?
    So, I wanted to know if anyone out there is from Michigan and who've
    they've seen and had good luck with. The good thing is the dr we saw
    yesterday with Beaumont follows the Mehta Method. He's an aggressive
    dr and said that as long as her MRI comes back normal next week which
    he suspects it will, he'll go ahead and start casting her. I was
    glad to hear that after all the research I've done. Of course I'm
    scared, nervous, emotional. All I do is cry. I know many of you
    have been there or are there too, so I want advice, info and help.
    Please if anyone has any info on any michigan dr's I'd greatly
    appreciate it along with any other help. This is all happening so
    fast, which I guess is a good thing considering I've heard it
    sometimes takes months to get into dr's, then months of observation.
    Thank you in advance for all your time and help. I greatly
    appreciate it! I hope to get to know you and your stories for we are
    here to help and lean on eachother.

    Thanks,
    Elizabeth

  2. #2
    Join Date
    Oct 2008
    Posts
    299
    Hi Elizabeth,

    I just read your post and wanted to respond even though I cannot help you specifically regarding infantile scoliosis (my daugher was 6 when diagnosed) or Michigan doctors (there likely will be some out there who can so hang in there). You brought back all my memories of the first couple weeks of my daugher's diagnosis when I cried every single day. It's grief, and it's expected. It will also pass, not that you won't still cry sometimes, but you will move on to dealing with what you've been handed. It sounds like you already are doing a very good job of that. As for which doctor to choose I would look carefully at which specialize in infantile scoliosis, and see a fair amount of infant patients. You want someone who not only knows it from a technical, medical perspective but also sees cases regularly in the real world.

    In addition, I have come to believe that a good orthotist will be at least as valuable to your child as your doctor. If you have choices, ask your doctor who is the best.

    Best of luck making your choices,

    Chris
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  3. #3
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome Elizabeth,

    I noticed you also posted on the Infantile Scoliosis yahoo group list. That place will give you more details and experiences dealing with infantile scoliosis than here. There are many good people here, just not many who have infants currently under treatment for infantile scoliosis.

    Try not to worry about too many details until she's had the MRI next week. Make sure they will be doing a FULL spine MRI. I would contact a PEDIATRIC neuroSURGEON (not neurologist) and ask them to read the MRI scan (not just the radiologist's report). This will give you a thorough result. Peace of mind means a lot.

    Best wishes.
    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 2009
    Location
    Midwest
    Posts
    31
    Hi June,
    Please send me a private message and check yours. I have the most fabulous pediatric orthopedic in Novi. I hope he is the doctor your are going to see.

    sls

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