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  • Thanks, Sharon
    from Boston, MA, USA

    9 y.o. daughter
    07/08 - diagnosed with L23
    10/08 - wait and see: L25
    11/08 - Spinecor: L15
    01/09 - Spinecor: L15
    06/09 - Spinecor: L14
    11/09 - Spinecor: L14
    04/10 (Out-of-brace): L30-T30
    08/10 - out of Spinecor
    01/11 (Out-of-brace): L42-T30
    02/11 - Rigo-Cheneau and Schroth

    Comment


    • Thanks so much everyone!

      Thank you for all your support... Halle's xray results came back and her curve is now 40 degrees... I am so sad right now... We will be going to The Hospital for Sick Children in Toronto now, so once we get in there she will be out of the Spinecor Brace... I will keep her wearing it until they get us in though.

      Thanks again everyone
      Marlowe mom to Halle (age 11)
      Diagnosed January 11/08
      In Spinecor Brace for 2 1/2 years

      In the Cheneau Brace for 10 months
      Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

      Surgery Scheduled at Sick Kids for May 16, 2011


      http://hallesscoliosis.blogspot.com/

      Comment


      • I only did 24 hours out of the brace before her xray but I think it might be 48 hours..
        Marlowe mom to Halle (age 11)
        Diagnosed January 11/08
        In Spinecor Brace for 2 1/2 years

        In the Cheneau Brace for 10 months
        Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

        Surgery Scheduled at Sick Kids for May 16, 2011


        http://hallesscoliosis.blogspot.com/

        Comment


        • Originally posted by MJB View Post
          I only did 24 hours out of the brace before her xray but I think it might be 48 hours..
          Thanks, I also thought at least 24 hours
          from Boston, MA, USA

          9 y.o. daughter
          07/08 - diagnosed with L23
          10/08 - wait and see: L25
          11/08 - Spinecor: L15
          01/09 - Spinecor: L15
          06/09 - Spinecor: L14
          11/09 - Spinecor: L14
          04/10 (Out-of-brace): L30-T30
          08/10 - out of Spinecor
          01/11 (Out-of-brace): L42-T30
          02/11 - Rigo-Cheneau and Schroth

          Comment


          • Well I emailed Dr. Rivard to let him know that I did an out of brace Xray, he seems like he's not happy about that... here is my e-mail to him, his e-mail to me (keep in mind he doesn't speak good english, so he doesn't write it well either) and then my response to him after that...

            Good afternoon,


            My daughter Halle had an appointment at your office on March 1. We were thrown off with her new xray saying that her curve had now progressed (in brace) to 23 degrees. We felt very strongly about finding out what her true curve is (out of brace) so we took her to our family doctor and he sent her for an xray (24 hours out of brace) and her results came back with her curve now at 40 degrees.



            Please let me know if a curve this high is even able to be treated with Spinecor, or if we should be looking into a Rigid brace now, we don't want to wait until it's too late or have it get worse.



            Thank you,

            Marlowe


            He responded basically saying that he wants to talk to us about his view on out of brace xrays before a stable correction has been obtained...


            My response....

            Hi Dr. Rivard,

            I understand that you have a procedure with the out of brace X-rays but I also have a responsibility to make the best choices for my child before it's too late.

            When she was first braced she was at 32T out of brace and 8T in brace, going up to 23T in brace was quite discouraging, when I see other mothers on Scoliosis message boards talking about their children in Spinecor always decreasing and some holding at 1 degree or 4 degrees. I haven't seen any others increasing on there, other than 1 girl and she ended up needing surgery because the Spinecor brace wasn't good for her curve.

            My daughter has been in her brace for 2 years, when we started we were told that after 2 years she would have an out of brace xray, it's been 2 years and no such thing has happened and it doesn't seem like it will anytime soon. I cannot wait around until she gets worse and gets older and have her spine calcify in a bad position, if she's going to need surgery I want to make sure it's done at the best age.

            I understand that you have a certain way that you treat your patients, but I needed to get a second opinion because she is not getting better in the Spinecor, she is getting worse and in order to get that second opinion I needed an out of brace xray for her.

            Please let me know if Spinecor works for curves that are 40 degrees and up, because on the Spinecor website it states in almost every paragraph that it's best for curves under 30 degrees and not as successful with curves above that.

            I am sorry I went against your professional opinion but as a parent, I had to know what I'm dealing with here, this is my daughters life, my daughters future and it's in my hands, I must make the best choices for her.


            Marlowe
            Last edited by MJB; 03-09-2010, 03:22 PM.
            Marlowe mom to Halle (age 11)
            Diagnosed January 11/08
            In Spinecor Brace for 2 1/2 years

            In the Cheneau Brace for 10 months
            Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

            Surgery Scheduled at Sick Kids for May 16, 2011


            http://hallesscoliosis.blogspot.com/

            Comment


            • Your letters are so good. So on point and honest. That is a great example of how to how advocate for your child.

              But I am not sure it is fair to post his email to you publicly. Maybe you should just paraphrase and not quote it? It doesn't really say much but still. People have a reasonable expectation that emails will not be posted publicly I think.

              Best of luck.
              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."

              Comment


              • It's sad that he is trying to talk you out of doing out-of-brace X-rays - it's really none of his business, it's not like you tell your child to stop wearing the brace

                I have a concern with SpineCor at the moment as well and I will be doing out-of-brace X-ray and will discuss it with a regular doctor

                My purpose with the SpineCor was to have it long enough to move Bella from JIS to AIS. She'll be 11 soon, which should be considered an AIS case

                I hope that everything will be Ok with your child!!!! I really do!
                from Boston, MA, USA

                9 y.o. daughter
                07/08 - diagnosed with L23
                10/08 - wait and see: L25
                11/08 - Spinecor: L15
                01/09 - Spinecor: L15
                06/09 - Spinecor: L14
                11/09 - Spinecor: L14
                04/10 (Out-of-brace): L30-T30
                08/10 - out of Spinecor
                01/11 (Out-of-brace): L42-T30
                02/11 - Rigo-Cheneau and Schroth

                Comment


                • Originally posted by Pooka1 View Post
                  Your letters are so good. So on point and honest. That is a great example of how to how advocate for your child.

                  But I am not sure it is fair to post his email to you publicly. Maybe you should just paraphrase and not quote it? It doesn't really say much but still. People have a reasonable expectation that emails will not be posted publicly I think.

                  Best of luck.
                  You are right... I will change it... he has responded to me and is being very helpful.
                  Marlowe mom to Halle (age 11)
                  Diagnosed January 11/08
                  In Spinecor Brace for 2 1/2 years

                  In the Cheneau Brace for 10 months
                  Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

                  Surgery Scheduled at Sick Kids for May 16, 2011


                  http://hallesscoliosis.blogspot.com/

                  Comment


                  • he said that he is going to send me a bunch of literature on juvenile scoliosis and he also mentioned that I will not find a rigid brace that will do better than Spinecor (which he has the right to say, that's how he feels as a professional)... he said that the percentage of scoliosis patients requiring surgery is much higher when it starts as juvenile... he said he understands my wanting to get a second opinion...

                    I sent him a response...

                    Thank you very much for your response Dr. Rivard. We need as much information as possible and would appreciate anything you can provide us with. We would prefer not to put her in a rigid brace because she will be very uncomfortable and she will develop muscle atrophy.

                    Anything that you can send us to help us make the best possible decision for her would be very greatly appreciated. Please do send us that information. We are very happy with her treatment that she has been given but very scared that the outcome may not be what we had hoped for. If there is still hope for her in the Spinecor Brace then we would really like to continue, right now we are just very scared and don't know which route to take.

                    Thank you,

                    Marlowe
                    Marlowe mom to Halle (age 11)
                    Diagnosed January 11/08
                    In Spinecor Brace for 2 1/2 years

                    In the Cheneau Brace for 10 months
                    Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

                    Surgery Scheduled at Sick Kids for May 16, 2011


                    http://hallesscoliosis.blogspot.com/

                    Comment


                    • Originally posted by BellasMom View Post

                      My purpose with the SpineCor was to have it long enough to move Bella from JIS to AIS. She'll be 11 soon, which should be considered an AIS case
                      Hi MJB,

                      I'm really sorry to hear that your daughter's curve has increased so much. I certainly understand your heartbreak and frustration at this point, and you are doing a great job advocating for your daughter.

                      BellasMom,

                      I just wanted to point out, your daughter will always be considered JIS--she does not become an AIS patient past a certain age. The classifications of JIS or AIS are made based on age at onset.

                      Good luck, and please do let us know how things are going.
                      Last edited by leahdragonfly; 03-09-2010, 09:26 PM. Reason: corrections
                      Gayle, age 50
                      Oct 2010 fusion T8-sacrum w/ pelvic fixation
                      Feb 2012 lumbar revision for broken rods @ L2-3-4
                      Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                      mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                      2010 VBS Dr Luhmann Shriners St Louis
                      2017 curves stable/skeletely mature

                      also mom of Torrey, 12 y/o son, 16* T, stable

                      Comment


                      • Hi Gayle;

                        I think you are mixing me up with MJB

                        I don't know Bella's out-of-brace measurements yet, I just noticed something that I'd like to get checked-out

                        By moving from JIS to AIS I meant that different treatments are appropriate at different ages with the same measurements

                        If by some miracle SpineCor held Bella's curve in place, then with the same measurements, but being 1.5 older, different course of treatment could be offered by her doctor

                        Now, all that's left is for miracle to occur and to show us the same L23 as in Nov, 08
                        from Boston, MA, USA

                        9 y.o. daughter
                        07/08 - diagnosed with L23
                        10/08 - wait and see: L25
                        11/08 - Spinecor: L15
                        01/09 - Spinecor: L15
                        06/09 - Spinecor: L14
                        11/09 - Spinecor: L14
                        04/10 (Out-of-brace): L30-T30
                        08/10 - out of Spinecor
                        01/11 (Out-of-brace): L42-T30
                        02/11 - Rigo-Cheneau and Schroth

                        Comment


                        • Originally posted by BellasMom View Post
                          It's sad that he is trying to talk you out of doing out-of-brace X-rays - it's really none of his business..
                          I can't improve on that line, Bellas Mom - it's perfect!

                          MJB - I'm sorry to hear what you are going through and the tough decisions you are facing. My heart goes out to you.

                          I don't know how Dr. Rivard can say, with certainty, that you won't find a rigid brace that will do better than Spinecor. I'm not saying you will or you won't, but he can't know that with any certainty.

                          Have you gotten other opinions regarding your daughter's case? I know you went for the OOB x-ray, but have you seen a pediatric orthopedic specialist, not necessarily regarding Spinecor, but to assess the situation for you?

                          My honest opinion is that you need to ask someone OTHER than Dr. Rivard if Spinecor is likely to help a 40 degree curve in a child your daughter's age.

                          I hope you don't mind my candor - I really do hope you find the best treatment for your daughter and I know that you will. Just keep following your instincts
                          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/

                          Comment


                          • Originally posted by mariaf View Post
                            I can't improve on that line, Bellas Mom - it's perfect!

                            MJB - I'm sorry to hear what you are going through and the tough decisions you are facing. My heart goes out to you.

                            I don't know how Dr. Rivard can say, with certainty, that you won't find a rigid brace that will do better than Spinecor. I'm not saying you will or you won't, but he can't know that with any certainty.

                            Have you gotten other opinions regarding your daughter's case? I know you went for the OOB x-ray, but have you seen a pediatric orthopedic specialist, not necessarily regarding Spinecor, but to assess the situation for you?

                            My honest opinion is that you need to ask someone OTHER than Dr. Rivard if Spinecor is likely to help a 40 degree curve in a child your daughter's age.

                            I hope you don't mind my candor - I really do hope you find the best treatment for your daughter and I know that you will. Just keep following your instincts
                            Thanks for your response! We have been referred to an orthopaedic specialist at one of the best hospitals in Canada, I think that it may take a couple months to get in there because there is always a waiting list but we are going to definitely make sure we get another opinion... this hospital we are going to does not support the Spinecor brace, so we will hear what they have to say in regards to everything. I am anxious to get this appointment.
                            Marlowe mom to Halle (age 11)
                            Diagnosed January 11/08
                            In Spinecor Brace for 2 1/2 years

                            In the Cheneau Brace for 10 months
                            Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

                            Surgery Scheduled at Sick Kids for May 16, 2011


                            http://hallesscoliosis.blogspot.com/

                            Comment


                            • Scoliosis being hereditery..

                              I am pregnant right now with baby #2... I am so worried that this child will end up getting Scoliosis too... How many of you have had more than one child with Scoliosis?

                              DH's sister has mild Scoliosis and we think that it must have been hereditery and that's why Halle got it, his sister did not require any bracing though, only a 15 degree curve.
                              Marlowe mom to Halle (age 11)
                              Diagnosed January 11/08
                              In Spinecor Brace for 2 1/2 years

                              In the Cheneau Brace for 10 months
                              Being treated at Sick Kids Hospital - Dr. Reinhard Zeller

                              Surgery Scheduled at Sick Kids for May 16, 2011


                              http://hallesscoliosis.blogspot.com/

                              Comment


                              • Dear Marlowe;

                                First of - congrats on your pregnancy!!!!!

                                Second - I really hope that you'll be able to get your DD to the doctor sooner than in 2 months

                                Keep us posted
                                from Boston, MA, USA

                                9 y.o. daughter
                                07/08 - diagnosed with L23
                                10/08 - wait and see: L25
                                11/08 - Spinecor: L15
                                01/09 - Spinecor: L15
                                06/09 - Spinecor: L14
                                11/09 - Spinecor: L14
                                04/10 (Out-of-brace): L30-T30
                                08/10 - out of Spinecor
                                01/11 (Out-of-brace): L42-T30
                                02/11 - Rigo-Cheneau and Schroth

                                Comment

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