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  • Questions for 1st ortho visit

    My 4 year old daughter has recently been diagnosised with scoliosis. Her 1st appointment with an orthopedic surgeon is next week. What kinds of questions should we ask? And what do we want to make sure we learn in the first visit?

    Her X-rays show a curvature of 21 degrees at the top of the back and 15 at the bottom. There is also a -3 written on the neck portion of the X-ray. I am still not familiar with the proper terms of what all this means.

    When the pediatrion first announced she had scoliosis I took the news well. But as time gets closer for the 1st visit and now that I have viewed the X-rays I am not doing so well. What are some ways to deal with the stress? Can anyone recommend some good books on scoliosis?

    Thank you for any help you can give to a newbie.

    Susan

  • #2
    Hi Susan,

    Welcome to the board. I hope your appointment with the ortho goes well. Make sure the doc is a PEDIATRIC orthopedist who has experience with very young children and scoliosis. This is very important.

    Also, remember that there is a +/- 5 degree margin of error when reading a scoliosis measurement, even when the same person does the measuring. The numbers you were given are general numbers, don't get set on numbers.

    Ask questions that are specific to your daughter. You will need to know if the scoliosis is congenital (meaning is there at least one vertebrae that is not formed correctly) or idiopathic (meaning the bones of the spine are formed correctly, but are curved). Ask what the docs experience in treating scoliosis in very young children is. Is the doc willing to discuss options? Does your daughter have any other medical issues that would comlicate the scoliosis (i.e., neuromuscular disease, kidney issues, heart issues, GI issues, etc.)?

    I have some exercises that young children can do to help keep their trunk/body muscles strong. Having strong muscles can help keep her active and flexible. Make sure you get permission before doing any new exercises (disclaimer we all know already...).

    Good luck and keep asking questions. The most important step is to have 100% confidence in the doctor treating your daughter. Make sure your doctor answers your questions satisfactorily. Each scoliosis patient is unique and has unique circumstances. They need to be treated uniquely.

    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/

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    • #3
      Thank you for your response. The ortho surgeon that we are seeing is a pediatric ortho. We are going out of our HMO plan because they do not have any pediatric ortho specialists. The HMO approved coverage of this doctor within a day.

      There was an article in our local paper about the specialist. He was one of the past presidents of the Scoliosis Research Foundation and was listed as a pioneer of more aggresive scoliosis treatments and early detection. So I do feel confident in this doctor. I also love my daughter's pediatrition who recommended this specialist.

      My daughter, Amanda, has had no other major health problems. The only reason we found out she had scoliosis is because in December she caught the flu, became dehydrated, was in the hospital and lost a lot of weight. Because of the weight lose we could see her bones and her back just didn't look right to my husband and I. So in March at her 4 year check up I mentioned it to the doctor and he could tell too. He ordered X-rays and it turned out to be scoliosis.

      That's our whole story so far.

      Thank you for reading and any replies would be greatly appriciated.

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      • #4
        I forgot to mention that when I picked up Amanda's X-rays I looked at them. I noticed that her hips were not even. Is this common in scoliosis.

        Again I wanted to thank you for your post because I didn't know the difference between the two phrases.

        We see the doc on 6-30. I will keep you updated.

        Susan

        Comment


        • #5
          Hi again, Susan,

          Yes, uneven hips are common with scoliosis, especially when the curves are not well balanced. Does she limp? Sometimes uneven hips cause the legs to appear different lengths, which results in limping. Braydon's hips were very uneven prior to his rod placement surgery at age 6. Since then, his hips have been evened out, his spine is well balanced (head and pelvis are well aligned) and his lungs have more room to breathe. We also found out that he has a 4cm leg length difference when his hips are level. He wears a lift added to his shoe, and you would never know the difference - no limping at all.

          This is something I would bring up with the ortho. I'm glad you have confidence in the doctors involved with Amanda - that's a huge plus.

          Write down your questions, in priority order. The doc may not have time to answer all of them, but at least the most important ones will be addressed. Good luck on the 30th! I'll be anxious to hear what they say.
          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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