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1 yr old diagnosis w/ hemivertebrae ??

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  • 1 yr old diagnosis w/ hemivertebrae ??

    What is this and what does it mean? My 18 mo old was xrayed yesterday and we were told he has 1 vertebrae that was only partially formed which in turn is causing a curvature in my son's spine. They are going to refer us to an orthopedic doctor but we are awaiting insurance approvals. Is there anything anyone can tell us about this? Or important questions we should ask on our first appt? My son is an ex 29 week preemie so he gets Physical Therapy already, but we're curious what things may be affected by this and if there are any precautions we should take.

    Any information would be helpful.

    Thanks!

  • #2
    Welcome to the list. A PEDIATRIC orthopedist should be following your son's scoliosis. He will likely have regular checkups with the ortho every 3-4 months until he's 3, then every six months after that. The ortho will be able to tell you the details about having a hemivertebrae, especially what the specifics are for your son. Each patient is very different. Some with single hemivertebrae issues go on to never need intervention surgery. Other's require surgery at an early age to prevent further progression of the curve.

    I don't think you'll have your questions answered until you meet the ortho. Write down a list of questions that are specific questions you have for your son. The doc should take the time to answer your questions and validate your worries and concerns. Scoliosis is a long term deal. Many scoliosis patients lead very full lives and only think about their scoliosis when it's time for another checkup. It is very important to have 100% confidence in your ortho.

    The PT will actually be a good thing for him. My son had a PT who worked with scoliosis patients. She gave me some great suggestions for exercises to do to keep that weak side (concave side) of his body strong. The stronger your long side/back muscles and abdominal muscles are, the less pain and stress you'll have on your back.

    Bracing for congenital scoliosis is a non-issue, typically. A brace will not "fix" something that nature didn't form right to begin with. Sometimes other medical issues influence how strong or how weak a person's spine is... for example, children with spina bifida tend to have weaker spines than other kids, just because of their medical issues. Someone with neuromuscular disease will have more issues as well. My children are basically healthy, they just have very different scoliosis issues where one requires invasive surgery to keep him healthy and strong.

    I hope you can get some good answers from the ortho that you see. Try to take this one step at a time and continue to enjoy him. He will do great, I'm sure!

    Carmell
    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/

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    • #3
      Thank you Carmel

      Ironically I just got a call from Regional Center and they discontinued my sons PT and changed him to OT only, but my caseworker said the Ortho can re-request the issuance of my sons weekly PT in addition to the OT. I'm going to try to wait patiently for our Ortho appt. and see what he says. Thankfully our PT is a friend of ours and may even come to the appt. with me to ask questions and be sure she at least gives me some exercises to help with what the Ortho recommends.

      Thank you, and I'm sure I'll ask more as I learn more.

      Thanks

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      • #4
        Sounds like things are moving in the right direction for you. It will be very good to have your PT friend go to your appt with you - two heads are ALWAYS better than one. Like I said, try to take one step at a time. You'll do great. If you have any other questions or feel like sharing, let us know. Feel free to email me too... boulderfam@hotmail.com

        Again, my best to you!
        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/

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