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7 year old son

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  • #31
    ken,

    i'm so glad that you found a doctor locally that you feel comfortable with. my husband felt the same way about dr. goldberg at nemc, the few times we met him. maybe they just train orthos to have a better bed-side manner there!

    i am very, very interested in the fact that dr. braun is curious about the spinecor. it would be great if someone in boston would prescribe and fit it.

    in the meantime, i understand that it is important to try and get your son's curves to stop progressing. getting the tlso so that at least his curve won't get worse (crossing fingers) and then think about all the options out there. i know that at nemc they are much more conservative in their bracing and even take x-rays in the brace to make sure that the brace is fitting correctly.

    how is your son taking it?

    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

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    • #32
      He seems to be doing fine. He is very curious as to what it is going to feel like, look like etc. He seems okay with the concept and has told some close friends. We'll see how he does on Thurs

      K

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      • #33
        I agree with Gerbo regarding "a hell of a change!"... did dr. Braun give you an adequate explanation why the previous x-ray showed the curve decrease from 25 to 15 degrees and the latest x-ray shows the curve at 35 degrees??? I hope your son takes well with actually having to wear the rigid brace. I read somewhere that boys have a harder time with rigid braces and compliance in your son's case might be a real issue. Anyway....I hope everything goes well.



        *****

        Canadian eh
        Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

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        • #34
          He was honest in that he didnt know specifically about the change. He did mention that Ben grew over an inch in the last 8 weeks and that the measurements are +/- 5 degrees but was adamant that there was no time to wait.

          The measurements are what is truly throwing me. I might give him a call

          K

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          • #35
            Has your son ever had an MRI of his spine to make sure there are no underlying conditions that could be causing his scoliosis? If not I would ask (push if necessary) his surgeon for a full spine MRI (including the base of the skull) and have it read by a pediatric neuroSURGEON. Just make sure everything is A OK.
            Good luck to your son with his new boston brace. Hope the transition into it is not too hard.

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            • #36
              Who Did Revision?

              Hi Mandy,

              I noticed that you live in California like I do, and wanted to know who did your revision surgery?


              Leslie

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              • #37
                Leslie,
                I had Dr. David Siambanes do my surgery. He works out of the Haider Spine Center in Riverside. I can give you more information on him if you would like.
                Mandy

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                • #38
                  Mom of 5 yr old boy - 25 degree curve

                  This is my first forum, not generally something I have the time to do!! Since having my suspicions confirmed I have been searching for insight on his diagnosis. I have insisted on P.T., but am coming up against the ins. co. after only a few months of treatment. The "Specialists" have told us to "watch and wait" I am trying to find someone that personally or medically back up my contention that the right therapy can be beneficial. Also, I am trying to find a physician who is willing to consider and research the spinecor brace if bracing is indicated for my son. Next appt is next wk!! Been reading everyone's comments they have been comforting!!






                  Originally posted by cherylplinder
                  I agree with everyone else that has spoken. My daughter had an 18 degree curve for about 3 years (from about 7 to 10 years old.) Our ortho considered 25 degrees to be the magic bracing number so he wouldn't brace her. She grew about an inch and her curve progressed 20 degrees in a few months to 38 degrees in January of this year. The Boston brace did not correct her curve at all in brace; so she was only in it for a month. Our ortho thought about the Milwaukee. I opted for Spinecor in MOntreal. She is doing very well in the Spinecor so far. She has grown several inches and her curve has decreased at every appointment. January she was 38T/27L out of brace and 31T/19L in brace at her initial fitting. In April, she was 23T/22L in brace. In August, she was 20T/18L in brace . I still have my fingers crossed. With a 38 degree curve at the age of 10, she had a 100% chance of surgery according to the doctors at Shriners and the literature. She has been in the brace for 10 months now. Her last check up was 2 months ago. She looks great!

                  This brace is very comfortable. It took very little to adjust to it. Rachel HATED the Boston brace. It was very uncomfortable for her although some children do not seem to mind it.

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                  • #39
                    Ken,

                    I would get a second opinion and have all the x-rays remeasured. This kind of wild fluctuation is not normal and the only logical explanation is that the doctor made a serious mistake and should have braced your son four months ago. Assuming the previous x-ray was really around 25 degrees and not 15 degrees as Dr. Braun suggested and the current x-ray shows a curve of 35, that's a 10 degree jump in 4 months. Given that your son's curve is progressing at such a rapid pace, if you are considering the Spinecor brace I would do it sooner than later because once your son's curve hits 40 degrees or more the Spinecor will no longer be an option. I would contact Dr. Rivard and Dr. Coillard ASAP and not wait for your doctor to educate himself and the orthotics staff on the merits of this brace.



                    **

                    Canadian eh
                    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

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                    • #40
                      agree, need to move!

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                      • #41
                        Thanks to everyone. It is great to log on and see all the replies knowing there are other going through the same things we are.

                        Ben had an MRI and everything was normal (thank god). Dr Braun was our second opinion took an xray and we all decided to wait the 4 months and see what happened. As I mentioned we were all shocked but I do know that the measuring is not an exact science. Am I being naive in thinking that this could just have happened? I have a call into the Doctor and will discuss this based upon my concerns and all of your helpful information. It is great knowing that he will actually return my call today.

                        Thanks again. Ben and I have decided to keep a journal and maybe we can share it with you when he gets a bit more comfortable.

                        Best to everyone

                        Ken

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                        • #42
                          Hey everyone:

                          Ben received his brace on Thursday. I have never been more proud of him. After being poked and prodded for 4+ hours he wore the brace home with no complaints. He was supposed to start slowly but he won't take the thing off. Wore it 21 hours yesterday. He says its already starting to feel like its a part of him. He is an incredibly sensitive kid so the fact that he is being so strong is great. I am sure he will have a meltdown at some point and explained to him that it is fine. I am certainly taking my cue from him and feel pretty good about things. We went out yesterday and bought some cool new jeans that will fit over it.

                          My observations.

                          1. The brace ended up being a lot smaller than I thought
                          2. With his winter clothes on you can't even tell he's wearing it
                          3. Seems to be a lot more comfortable when he lays down, he still can't find a comfortable spot to sit in

                          The best news is that without the brace the last measurement was 35% and with the brace it decreased to 8%. Doctor thought it was phenomenal.

                          He enjoys when I hit him in the chest. Thinks he's indestructable.

                          He had told his best friend at school that he was getting it so when he showed up on Friday (without the brace on) his friend leaned over and punched him in the stomach expecting to feel the brace. Must have been funny when Ben was crumpled over laughing.

                          Any help in good sitting positions would be appreciated. Also, he is getting red on the hips and bums any idea how to handle that.

                          Thanks for all the support

                          Ken

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                          • #43
                            Red spots

                            Ken,

                            Glad to read that the brace is helping so much. It sounds like you have a lot to be proud of. It's hard for these little guys having to deal with so much grown up stuff so soon. I laughed at the indestructible comment. I remember Spencer's school principal thinking that Spencer's TLSO brace was to protect his frail little body and he had a hard time believing when I told him it was all therapuetic (gives you a lot of confidence in public education, eh?). Anyway, I actually miss having his brace on now that he is fused because Spencer is so floppy that the brace gave us handles to pick him up without pulling his arms out of socket. Sigh.

                            Anyway, red spots are a sign the brace is not fitting correctly and probably needs some adjustments. You need to watch for red spots and get the brace adjusted soon because you can have breakdown in the skin and develop sores that are similar to bed sores. Can be very painful.

                            Hope this is helpful. By the way, what kind of brace does he have?
                            Last edited by Spencer's Dad; 02-12-2007, 11:47 AM.
                            Spencer's Dad

                            11 year old boy with PMD Luekodystrophy
                            Nonambulatory, nonverbal, nonweight bearing
                            VRO and Pemberton hip reconstruction at age 5
                            Nissen fundo at at age 7
                            Subdermal spinal drug pump at age 9
                            Complete Spinal Fusion Jan. 9, 2007 at age 10.
                            118 degree curve before surgery - less than 25 after!!

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                            • #44
                              Hi Spencer's Dad:

                              Thanks for the info, we have an appt pretty soon with the orthotist so hopefully he can make the corrections.

                              Ben has a basic TLSO brace

                              Ken

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                              • #45
                                Hello,
                                I am glad to hear that the brace is working out so far. I have a 9 year old son with S-shaped idiopathic scoliosis diagnosed about 1 1/2 years ago. He has had his Boston brace for a little over a year and will get a new one fitted in about six weeks. It is working - I can see that his spine is straigter and the in and out of brace xrays show that also. He wears it between 18 - 23 hours a day, most days about 21 hours, I am guessing.

                                He can take it off when he exercises, if he wants to, but often it is less trouble to leave it on, especially at school. So, he runs it it, plays basketball, tag, PE, ice skates, roller blades. etc. For league basketball practices and games, he takes it off. For skiing, and now snowboarding, he does not wear it. He is very physically active, with or without his brace.

                                For boys, their clothing hardly shows the brace. He does wear elastic waist sweat pants and shorts, because he finds it easier to adjust and pull down his brace shirt than with jeans. He always wears the white brace shirts under his regular T-shirt. In summertime, he often just wears his brace without a T-shirt, for casual wear.

                                The first week was very tiring for Robert - especially walking around with it. But then his body seemed to get used to it. He found it the easiest to wear when he was sleeping. If the red marks look raw, and do not go away when the brace is off, it probably needs to be looked at by the "brace guy". They are usually good about making adjustments.

                                Good luck with it. Please ask if you have any questions (jzalog@yahoo.com).

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