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Thread: New, questions about Shriners hospital

  1. #1
    Join Date
    Mar 2009
    Posts
    1

    New, questions about Shriners hospital

    Hey everyone! I had a couple questions I hope someone can answer. We noticed my sons back around 9 months. He had his first X-Ray in November, and it showed he had a 31 degree curve, RVAD 20. We were sent to primary Children's orthopedic section, and the dr. said we should wait 3 months to see if it progresses or not. Well, we waited, and just went back last week and it progressed to 40 degrees RVAD 60. He then told us we should wait another 6 months??! My son is 16 months now, and isn't walking yet, he said we should wait a half a year to see if walking fixes it. I just don't feel right about this, so I found on here that people had been to shriners. When we called Shriners hospital in SLC they said we needed to fill out an application and they would let us know in a couple weeks if they would accept my son.
    So my questions, is it hard to get in to Shriners? How bad does the curve have to be for them to cast a child? And can learning to walk really correct his spine, especially when it's progressing? Thanks!!
    Last edited by ambchalise; 03-24-2009 at 11:20 AM.

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi ambchalise,

    I'm sorry to hear your little one has scoliosis. I have lots of questions running through my head! If I knew the answers to the questions, I'd feel better about helping. My son is treated at PCMC in SLC. He has had excellent care from Day 1 (literally - he was diagnosed with scoli in-utero). I'm curious about the doc you are seeing... would you mind emailing me, or PM'ing me with his/her name?

    That said, Shriners is a great facility. Actually it is exception for infantile scoliosis. You are in THE best place to get the right care for him (if he has idiopathic scoliosis with no other medical conditions that may influence treatment for scoliosis - back to my many questions in my head, wondering about his overall health). Call Shriners back and speak with the Care Coordinator directly (I think her name is Angie?) and ask how soon your son could be seen by the docs at Shriners. Dr. D'Astous is the lead doc for treating infantile scoliosis. Try to make an appt with him. My Braydon sees docs at Shriners for his leg length difference, and we have had exceptional care there, too.

    Back to your son. You mentioned he is not walking yet. Scoliosis, alone, is not a reason for him to not be walking. That's why I wonder about other - possibly underlying - conditions that may be affecting his scoliosis.

    I'll save the rest of my questions for later

    I'd be happy to send you my phone number, if you need someone to talk with. My email is boulderfam @ hotmail.com (without spaces).

    My best!
    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/

  3. #3
    Join Date
    Feb 2008
    Posts
    6
    Hi there! Max will be getting his first cast on Tuesday at Chicago and he is also 18 months old. I would love to talk to you! I am so nervous, like you I hate to see him uncomfortable, hence why we decided against bracing. Hope to hear from you soon!

  4. #4
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,762
    Quote Originally Posted by ambchalise View Post
    My son is 16 months now, and isn't walking yet, he said we should wait a half a year to see if walking fixes it. I just don't feel right about this, so I found on here that people had been to shriners.
    Hi and welcome,

    I would not feel right about this either. My son was diagosed when he was just a little older than your son. My pediatrician was unconcerned as well. But as soon as we saw an ortho, we realized it was something that required treatment, sooner rather than later.

    While I'm not trying to alarm you, but please don't wait to see if walking will "fix" it. Follow your instincts - they are correct.

    Carmell gave you some great advice. I have heard great things about Dr. D'Astous. There is also another website dedicated to infantile scoliosis, with an emphasis on casting - and parents there have children who are being treated by Dr. D'Astous.

    The site is www.infantilescoliosis.org.

    Best of luck and please keep us posted.
    mariaf305@yahoo.com
    Mom to David, age 16, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding in mid 20's)
    Under the care of Dr. Randal Betz since 2004
    http://www.spineandscoliosis.com/the...dal-r-betz-md/

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz jcerrone@spineandscoliosis.com or (609) 912-1500

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