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Thread: 6 yr old son diagnosed, lots of questions

  1. #1
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    6 yr old son diagnosed, lots of questions

    Hello everyone. At my son's 6 yr check up 3 weeks ago, his doctor was concerned about his back and sent us for x-rays. It turns out he has scoliosis. I'm not sure if it is Idiopathic yet as we haven't been able to get in with the specialist yet, but we have an appointment later in the month. I tried to move it up but they weren't able to.

    I do know that in the lumbar region is curve is 23 degrees and in the thoracic region it is 37 degrees. From everything I read, bracing doesn't seem to help at this age.

    I was wondering if anyone can help me form a list of questions to ask the doctor. Also, what should I expect this visit? I already have copies of his x-rays to take.

    And if anyone knows a way to help a child through this, please let me know. He is very stressed for some reason. He did draw a picture and labeled it his scoliosis book. He drew himself with a snake-like back, and he drew a fort and slide that were also "crooked." He has also been diagnosing his stuffed animals.

    Any information you can give me would help a lot! Thanks!

  2. #2
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    Hi LadyRex,

    First, I am sorry to hear of your son's diagnosis and I remember all too well that feeling of being punched in the stomach when first hearing the news. Fortunately, though, scoliosis is a treatable condition - and many of us have walked in your shoes and are more than willing to help you through this journey.

    My first bit of advice would be to see not only a pediatric orthopedic surgeon, but one who specializes in juvenile scoliosis and sees a good number of young children such as your son, not just teenagers. I can't stress this enough, as there are many challenges unique to early-onset scoliosis.

    It might also be hard to find lots of parents of boys with scoliosis, but we are out there

    You might also want to get more than one opinion. Shriners Hospitals for Children are often good choices as they see a large number of scoliosis patients, many of them juveniles.

    Please feel free to e-mail me as well with any questions, etc. My e-mail address, as well as a some info on my son, are in my signature.

    Best of luck to you and your son and please keep us posted.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  3. #3
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    Hi LadyRex,

    My daughter was also diagnosed when she was technically 6 (although she was only a few weeks shy of 7). Maria's description of a "punched in the stomach" feeling is appropriate for how I felt too!

    I second Maria's advice to find a pediatric orthopedic surgeon who first of all specializes in scoliosis and who has a concentration of juvenile scoliosis patients as well. You'd want your orthopedic surgeon to be a member of the scoliosis research society since members devote at least 20% (although I'd want someone who spends a lot more than that) of their practice to scoliosis treatment and other requirements. You can go to their website ( http://srs.execinc.com/edibo/PublicDirectory ) and see a list of members- there is the option to search by geographic location or specialty. I also would recommend meeting with at least a couple orthopedic surgeons. It seems every dr. has their own take on scoliosis and its treatment. Even if the doctors recommend the same course of treatment, you are likely to learn new things at each appointment. We met with 3 doctors and had a good conversation with the physicians assistant at 2 different shriners hospitals and we learned something meaningful and new with every one of those meetings. While you are waiting for this first appointment, do a little research into a second opinion and get that appointment scheduled also. I'd try to find someone very experienced even if it means driving a few hours to get there (you might not go with this person, but it is worth paying and traveling to at least hear the thoughts of the best scoli minds)

    When you have the appointment they will review and remeasure the xrays (one of ours wanted to take another set of xrays since the ones that had been taken didn't have my daughters' entire spine). They perform an exam of your son...checking reflexes in various parts of his body, have him bend over to see his spine, look for cafe au laut marks, etc. They will ask questions about family history, does he have pain, etc. Given your son's young age, they will probably recommend that he get an MRI so they can rule out certain other items that can cause scoliosis. If they don't recommend it, I would ask them about it.

    My daughters' curves were smaller than your son's curves so we had a different opinion on what we should do with each doctor. I'm guessing every doctor will recommend bracing in some form but they may vary on what kind of brace, how long it should be worn, etc. Unfortunately there aren't many studies that focus on the JUVENILE ideopathic scoliosis patient, so its hard to know what to expect from bracing. However, ANECDOTALLY, it seems to me that some of these younger patients seems more likely to have success in reducing their curve with bracing. Perhaps because their spines are more flexible? What I don't know is if these curve reductions will hold during the adolescent growth spurt - once again, not many studies aimed at this age group and the people I anecdotally know had curve reductions still haven't finished growing so we don't know what the ultimate outcome might be despite short term success.

    There is a lot of information on these boards, if you have a chance, try to read through them as well as other websites like the scoliosis research society. As you read you will naturally come up with a list of questions...i believe that the more you know going into the appointment, the more meaningful information you will get out of it.

    How to help your son through it? hmm . For us, the hardest part of it all was telling my daughter that she was going to be wearing a back brace. When she was initially diagnosed, we explained to her that in fact very few people are totally symetrical. For some people their eyes are shaped a little differently or a persons dominant arm might be larger than their other arm, etc etc. With spines many many people have curves - most people don't find out because the "asymetry" is so small...it was just that our daughters was a little bigger. I think it's great that your son is diagnosing his animals - a great way for him to work out his feelings. He sounds very clever. Does he realize that some sort of treatment may be coming yet? We had to break that news to our daughter in stages. First we got through all the appointments and then started talking about what was going to happen. in stages. basically the older she got the more we told her.

    Good luck to you! Let us know how your appointment with the specialist goes.

    p.s. if you tell us the area you live in people might be able to recommend a doctor in that area
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  4. #4
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    Sep 2005
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    I am very sorry for your son's diagnosis. My daughter was also diagnosed early, at age 5. Her scoliosis was not idiopathic as you can see in my signature. I would make sure that your son is given an MRI to rule out other causes for the curve. It should be a full spine MRI. Not just one or two sections.

    Learn as much as you can prior to your doctor visit so you will know what questions you want to ask. Do not be worried about getting second and third opinions as it is important to see how different doctors would handle the case.

    Take deep breaths and one day at a time. It is long journey that is ahead of you, but as Maria said it is treatable.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

  5. #5
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    Quote Originally Posted by jillw View Post
    p.s. if you tell us the area you live in people might be able to recommend a doctor in that area
    Great point, Jill.

    LadyRex - Many of us here are already seeing doctors who specialize in juvenile scoliosis and whom we are very happy with. That might be a good place to start. Again, there is a HUGE difference, IMHO, between seeing a pediatric orthopedic surgeon and once who sees a large number of young children, not just the typical scoliosis patient (largely teenage girls).

    I know this because my son's former ortho fell into the first category and his current doctor(s) (Dr. Betz and his team at Shriners Hospital for Children in Philadelphia) probably see more juvenile cases than just about anybody.

    The difference is tremendous. I suppose because when a doctor sees mostly older kids, they may not be up on the latest and best treatment methods for treating juvenile cases.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  6. #6
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    Quote Originally Posted by mariaf View Post
    Great point, Jill.

    LadyRex - Many of us here are already seeing doctors who specialize in juvenile scoliosis and whom we are very happy with. That might be a good place to start. Again, there is a HUGE difference, IMHO, between seeing a pediatric orthopedic surgeon and once who sees a large number of young children, not just the typical scoliosis patient (largely teenage girls).

    I know this because my son's former ortho fell into the first category and his current doctor(s) (Dr. Betz and his team at Shriners Hospital for Children in Philadelphia) probably see more juvenile cases than just about anybody.

    The difference is tremendous. I suppose because when a doctor sees mostly older kids, they may not be up on the latest and best treatment methods for treating juvenile cases.
    You know I think we might have seen some evidence for what you are saying...

    Remember that Dr. Hey blog entry I posted a while back with him saying/implying that most juvenile cases are successfully treated for something like that. Apparently that isn't the case (I have no idea) or should have had a different nuance or something. I think Celia Vogel actually called him on it and he edited the post. He did not back down much as I recall but did edit the post.

    The point is that he sees all kinds of patients, kids, adults, etc. I have to wonder how many JIS cases he has treated if his statement was not correct.

    Last, I think JIS hasn't been studied nearly as much as AIS in terms of conservative treatment approaches. I would not be shocked if it was eventually shown that bracing has a higher and detectable rate of success than in the AIS crowd. That said, even if/when that is ever shown, I would still go with VBS if my kid qualified because it seems like a much, MUCH easier treatment and can't have a worse track record than bracing.
    Last edited by Pooka1; 10-09-2010 at 12:41 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #7
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    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #8
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    Oct 2010
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    Thank you everyone. I am an hour from Lousiville. We are going to the Norton Leatherman Spine Center in Louisville. I think they see patients of all ages. We are also in the process of applying for the shriner's hospital in Lexington, Ky. That one will be a bit more of a drive, but I feel worth it.

    For now we do have the one appointment and we're filling out paperwork and referrals for the others. So now we wait, read, and wait!

  9. #9
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    Quote Originally Posted by Pooka1 View Post
    The point is that he sees all kinds of patients, kids, adults, etc. I have to wonder how many JIS cases he has treated if his statement was not correct.
    Exactly. If a surgeon sees a wide range of patients, mostly AIS cases, adults, etc. - then how much time and focus do they actually spend on learning all of the nuances of JIS?
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  10. #10
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    Quote Originally Posted by Pooka1 View Post
    Last, I think JIS hasn't been studied nearly as much as AIS in terms of conservative treatment approaches.
    I think JIS hasn't been studied nearly as much as AIS, period

    But I get what you are saying - that the treatment methods for aggressive curves in juveniles have consisted largely of things like growing rods, etc.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

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