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  • 7 year old son

    My seven year old son was just diagnosed by his pediatrician with 20 degree double curve scoliosis. Of course the wait to see a qualified orthopedist is over a month. I have spent the last hours researching all the sites I could find and this seems to be a great forum. Can someone please let me know what to expect in the coming months, years. My son is very active (as he says "sports is his life"). Will scoliosis have an effect on his ability to play sports? Does it stunt growth? W

    Any information would be great. Thank you and best to you and your families

    Ken

  • #2
    Welcome Ken,

    I, too, have a 7 year old son named David. (He also loves sports.) However, he was diagnosed when he was much younger. If you read some of my posts and check my signature you will see some information regarding David. I would be happy to answer any questions and help in any way I can. I know that a month is a long time to wait but try to hang in there and see what the ortho says before you start thinking about scenarios that may never play out. (Easier said than done, I know!)

    Even though it was a good thing that the pediatrician caught the scoliosis, the ortho will be your expert on this. Please find one that you trust. Depending on which part of the country you live in, you can probably find some good recommendations right on this forum.

    If you prefer to e-mail me privately, please feel free to do so. My address is mariaf305@yahoo.com.

    Good luck....we're all in this together!
    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


    • #3
      Hi Maria

      Maria:

      Thank you very much. You raise some valid points. I know it makes sense to wait for what the orthopedist says but unfortunately I am a bit of a worry wart (actually a big worry wart). Luckily we are in the Boston area and will be referred to Children's Hospital so I am sure we will get an orthopedist who at least has the training and knowledge to help us.

      I may take you up on your offer and bug you privately. I spend so much time "playing around" on the internet it is nice to know that it has a purpose and I can join a forum with people having similar experiences.

      Best of Luck to David and I hope to speak with you soon. I can always be reached at badbeat1000@yahoo.com

      Ken

      Comment


      • #4
        Hi Ken,

        Ditto what Maria said. Scoliosis is a general term and you need to have information from a PEDIATRIC orthopedist who specializes in treating kids with similar conditions. There is a good team of docs at Boston. My suggestion is to write down you questions, in priority order, that are specific to your son's situation. Scoliosis is not common in very young children. This makes getting all the facts straight more important. My son was born with congenital scoliosis and has had multiple surgeries to support his spine and ribs/lung. He is very active. His ONLY restrictions are no full contact sports (no football) and no trampoline. He snowboards, hikes, rides his bike, digs in the dirt, and many other things active 11yr old boys do. If you saw him on the street, you would never guess what his little spine looks like. My point is that in the beginning you are in the information gathering stage. As time goes on, your son will lead a very full and active life. Children with scoliosis do better when they are more physically fit - their trunk muscles support the spine better and if surgery is ever needed, the body heals better when physically fit. Things like that.

        I'd be happy to share our experiences with you too. My email is boulderfam@hotmail.com We'll be anxious to hear what the docs in Boston have to say. I met Dr. Emans once. Very kind and very knowledgeable. I would trust my child's life to him. Dr. Hedequist is also a specialist in very young children with scoliosis. I believe you are in good hands. If, however, you come away from your appointment and feel more anxiety than when you went in, there are other great options for second (and third, and more) opinions in your area. One step at a time.

        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/

        Comment


        • #5
          Ken,

          I'm sure I speak for myself, Carmell and everyone on the forum when I say that we are more than happy to help

          take care,
          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


          • #6
            ken,

            i also live in the boston area. my son lucas who is almost 5 was diagnosed with infantile scoliosis at the age of 18 mos so i have a bit of a different perspective than you, but i wanted to reach out and let you know that i could possibly help if you need a second or third opinion in this area (which i highly recommend even though you are going to children's). in all likelihood at your appointment, they will recommend other x-rays to be taken - front, side, and possibly bending or laying down to see how flexible your son's curve is). i'm not as certain they will recommend this, but i would push for an mri.

            i know that it will be a long month, but definitely write down your questions as carmell mentioned since these appointments are usually so quick so you do need to be prepared.

            welcome,
            deshea

            mom to lucas (almost 5 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o; spinal detethering due to a tight/fatty filum at 22 months; tlso and charleston/bending brace from 18 mos to 2 1/2 yrs old at children's boston, ma; serial plaster casting from 2 1/2 yrs old until june of this year at shriners in erie, pa; now in a spinecor brace at 18o/14o from montreal; next appointment in jan 2007. of course, the future is uncertain, but as always we are laughing and enjoying life!) and ruby (2 yrs old and a handful!)
            north of boston, ma
            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

            Comment


            • #7
              Thank you

              A big thank you to everyone on this forum for the kind words and support. We had a great weekend and are going to wait until our appointment with the ortho so we can find out more information. I appreciate all of the informaton from all of you and everyone else on this website. I have read through most of the posts and feel better and more knowlegeable. Will update as soon as I have more information and will be in touch with everyone.

              Take care and god bless

              Ken

              Comment


              • #8
                Hi Desheah

                Just found out that my son's appointment is with Dr. Hedequist. I believe that he is your doctor too. Can you tell me a bit about him. Do you find him knowledgeable? Would you recommend him?

                Thanks again

                Ken

                Comment


                • #9
                  ken,

                  if you don't mind, i will send you a private message.

                  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

                  Comment


                  • #10
                    Thanks

                    That would be great. Not sure how these forums work, sorry if I overstepped by asking you in the public forum

                    Ken

                    Comment


                    • #11
                      Diagnosis confirmed

                      Just following up. My son was seen by Dr. Hedequist on Friday at Children's Hospital in Boston. He confirmed the scoliosis diagnosis with a 20 degree S curve and recommended bracing in a Boston Brace for 18 hours a day. Also need a follow up MRI schedule in 6 weeks. While we figured the diagnosis would be confirmed we were truly hoping for a different treatment. As you can imagine my 7 year old is very upset and has been crying for days. He told me he doesnt want to be "different".

                      My wife and I have explained that this is no different than wearing glasses or braces on your teeth. You have a problem and the brace is designed to help you. He is heartened by the fact that this will have no affect (hopefully) on all his sport activitites.

                      Not knowing if he is going to be wearing this for 6 months or 10 years is incredbily frightening. Things seem to be moving sooooo fast. Within hours of seeing the Ped ortho he was getting fitted for his brace.

                      Any suggestions on how to deal with EVERYTHING. One of my concerns is, are we doing the right thing. We have no baseline to suggest that the curve is even growing (I understand that it most likely is). Is a nightime brace an alternative. How about Spinecor. Everyone seems to rave about it but does it really help as much as TLSO brace. My head is spinning.

                      I have a call into the doctors in Montreal and awaiting a response. Thank you all for your support. Any information or advice would be much appreciated.

                      Ken

                      Comment


                      • #12
                        I'm glad you have a call in to Montreal. Please check-out the Spinecor thread under Bracing on this site. They are having wonderful results especially with younger children and smaller curves. Your son is the perfect age to potentially correct his curve with Spinecor, not just keep it from getting bigger. My daughter has had both kinds of braces and as far as playing sports and compliance the Spinecor wins hands down. The best thing about it is that the soft tissues are being corrected as the child moves wearing the brace so the muscles, tendons, liagaments are being re-educated into proper posture. In order to hold the spine straight these things have to be strong. A hard brace does not accomplish this - in fact, just the opposite happens. The Spinecor is much more comfortable and does not show under clothes. This might not be a big issue because you have a young boy but it is a huge issue with girls.

                        Take heart - this will begin to sort itself out and not be so confusing. We all just want to do the very best for our children and I"m sure all of us on the forum can remember the fear and challenge of making these kinds of decisions. My biggest regret is not finding Spinecor when my daughter was first diagnosed 4 years ago - at that point we could have had real correction, now we are looking at just stabilizing. God bless.

                        Comment


                        • #13
                          Spinecor

                          Hi Ken

                          My daughter is 7 and in spinecor. I HIGHLY recommend it. My husband and I call the brace a "no-brainer" I am going to send you a private message with my e-mail. Perhaps we should speak by phone. I live in CT I am no expert but I just went thru what you are dealing with and can share our experiences!!!

                          Christine
                          from CT, USA
                          6 year old daughter diagnosed 7/06 33* T9

                          Spinecor 8/06 - 8/2012
                          8/06 11* 3/07 5*-8/07 8*-2/08 3*
                          10/08 1* 4/09 Still holding @ 1*
                          10/09 11* OOB 4/10 Negative 6*
                          10/2011 Neg.11* IB 11yrs old 0 rotation
                          4/2012 12* OOB 0 rotation
                          8/2012 18* OOB for 2 weeks. TSLO night time
                          2/2013 8* OOB 3 days TSLO nightime
                          3/2014 8* Out of Brace permanently

                          Comment


                          • #14
                            Ken,

                            I agree with Christine and Lorie. The best time to take advantage of the spincecor brace is when your son's curve is still low, I don't think this brace is intended for larger curves. Scoliosis has a mind of it's own and you never know when there will be a sudden jump in numbers so if you do intend to go with the spinecor brace I would do it sooner rather than later It's also my understanding that due to the male anatomy, boys don't have half the problems girls do with the crotch straps. Am I right Deshea ???

                            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

                            Comment


                            • #15
                              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.
                              Last edited by cherylplinder; 10-17-2006, 01:20 AM.
                              God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

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