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new at this: 5 year-old son w/ scoliosis

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  • #16
    We go to Shriners in Erie

    hi kim,

    first time posting on your thread, but i wanted to say welcome. it's great that you are comfortable with dr. albanese -- believe me, sometimes that can be one of the biggest hurdles! on that note, i also wanted to put in a good word for erie shriners. my son lucas who is now 3 1/2 yrs old was diagnosed with infantile scoliosis at 18 mos. we live north of boston so we first went to children's hospital in boston (15 min car ride) for 1 yr while we gave bracing a try. anyway, we ended up going to dr. sanders in erie because besides bracing, he also does serial plaster casting for scoliosis. lucas has been in multiple casts for 1 yr. i don't have any experience with bracing with dr. sanders, but he is a wonderful doctor and of course, shriners is free for kids with any orthopaedic problem. this would solve your dilemma with the health insurance. just to give you more options. also, it is always good to get a second opinion when it comes to dealing with your child's health. you don't necessarily need to go there, you could just send your records to dr. sanders to get a second opinion.

    best of luck,
    deshea

    Originally posted by Kim T
    Would Alex have to be followed by a Shriners doctor to get his brace through them? Just don't want to have to go through another long trip, evaluation, etc. if not necessary. Plus Mike, Alex, and I are just getting comfortable w/ Dr. Albanese and would rather not switch to a doctor even further away from home--2+ hours to Syracuse, NY is long enough w/ a 5-year-old in the car. I think the closest Shriners is in Erie, PA and that's about 3 1/2--4 hours from our home.
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

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    • #17
      update: rescheduled MRI

      Well, had to reschedule Alex's MRI for November 2nd as Alex caught a cold/flu the second week of Kindergarten and they can't do the sedation of he's really stuffy, coughing, feverish. Fun, fun... So the wait continues.
      I'm getting aggravated as our local hospital will only do this particular study on Wednesdays, so they schedule way out. By the time we get the MRI done we'll have to repeat the x-rays anyway to find out if the curve has progressed since his first x-rays in July! I know scoliosis is not life-threatening, but I'm just worried there may be an underlying cause we don't know about and this is taking FOREVER just to have the testing done.

      Anyway, just wanted to let ya' all know the latest. Bye!

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