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  • New to Forum, 5 yr.old w/Scoliosis

    Hi Everyone, I'm so glad to have found this site. Our 5y.o. was diagnosed with idiopathic scoliosis about three months ago here at Dallas Scottish Rite. She has a 49 degree and 40 degree curve from mid to lower back in a backward S shape. She receives her first brace in 2 weeks and I'm very concerned about the transition with this.

    Also, she is being tested for Prader-Willi syndrome. Although it is sad to have her diagnosed it is also a relief to know why so many of the random, unrelated probems she has exist.

    Please help me with any suggestions or advice. I feel overwhelmed and stressed. It's hard raising a special needs child, but I'm thankful to God for the answers He is providing.

    Thanks,
    Laura
    Laura
    mom to Tori, 5y.o., 49 & 40 degree curves in mid to lower back
    mom to Will, 2 y.o., straight back

  • #2
    Hi Laura - Welcome.

    You are not alone. There are several families here who have special needs kids AND they have scoliosis. Your daughter is very young. She has a lot of growing left to do. Hopefully the docs at Scottish Rite will give you the best options/recommendations for her. There are new technologies to treat scoliosis in young children. Maybe one of these techniques will work for her and her multiple medical issues. Is she adjusting to the brace? Sometimes its harder than its worth.

    Good luck and keep us posted.
    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


    • #3
      I wonder if she would be a candidate for vetebral stapling? Usually the maximum curve is 45 degrees, but I know they did a 51 degree curve because it was so flexible. Sometimes overweight children can not be braced as successfully. I am just assuming that with the syndrome you describe, weight is an issue.

      Another technique useful in large curves in young children is casting. One friend of mine says she has seen many chubby children cast successfully. Salt Lake City does casting, but more than one Shriners does, I think. Do a NSF forum search on casting and I am sure there is a list of docs that do that. Casting sometimes provides permanent correction of curves whereas the goal of bracing is to hold the curve.

      Research your options on your own. Docs tend to have their favorite treatments in their list of options and there are sometimes more effective treatments out there.

      In infantile scoliosis, casting can reduce a 50-60 degree curve to the 20's.
      I wonder as large as your daughter's curve is if it has been unrecognized for a number of years. The five year old spine is still very flexible and there is a lot of growth left. Growth can be used as a corrective force with casting.
      Do a search on casting on this forum and you will see many success stories. My friend, Celia Vogel, has a daughter that was cast from 3 to 5 years of age, I think and reduced her curve from the 50's or 60's to the 20's. The Spinecor brade has her curve at 1 degree.

      Another treatment that is an option when bracing, casting, and stapling are exhausted is VEPTR rods which stabilize the curve until growth is finished.


      Keep your chin up! There is a lot of help and support here! And God is always good!

      Hugs!
      Cheryl
      Last edited by cherylplinder; 01-15-2008, 09:10 PM.
      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.

      Comment


      • #4
        Thanks

        All the info. and direction is so very helpful. Yes, weight is an issue. We've just stablized her weight in the last three months with thyroid medicine and she grew also! I want to buy as much time as possible so that she can grow. I happened to feel a bulging place on her lower back about 6 months ago. That's how we discovered the scoliosis. Thanks again. I'll keep you posted.

        Laura
        Laura
        mom to Tori, 5y.o., 49 & 40 degree curves in mid to lower back
        mom to Will, 2 y.o., straight back

        Comment


        • #5
          Hi Laura,

          Welcome!

          Cheryl mentioned many good alternatives to bracing. I am most familiar (see my signature) with vertebral body stapling (VBS). My son was 5 when he had it done at Shriners in Philadelphia (Dr. Betz and his team there are THE BEST) and I believe Cheryl was referring to a young boy (4) who I told her about who had a 51 degree curve "stapled" a few days after David. At your son's age, and with so much growth left to do, a 49 degree curve would NOT automatically disqualify him for the VBS. My guess is that the main factor would be how flexible his curve was. If you are interested in this option, you can contact Janet Cerrone at 800-281-4050 or janetcerrone@comcast.net for more information. You can also feel free to e-mail me as well. There's also a VBS support group you can join if interested.

          Casting has also yielded some very good results - while a lot of the kids who are casted are infants and very young children, I do not know enough about it to say whether 5 would be too old for this to be a viable option. Also, if you say your are not sure how the brace would be tolerated then I don't know if casting would be ideal.

          The VEPTR is another option but it involves multiple surgeries, and is more invasive than VBS. However, it is a great option for some kids (particularly those who, for one reason or another, are not good candidates for other forms of treatment). It allows the child to grow and, as I said, has been a Godsend for some.

          I don't know where you live, but I would be happy to find out - if you are interested - which of the Shriners Hospitals (I've learned much about their system in the past 4 years and they are wonderful folks as well) perform VBS and which perform casting or VEPTR - whichever option(s) you might be interested in. Again, my personal experience has been with the Shriners Hospital in Philadelphia and the care there is second to none (we live in NYC and have good insurance but still travel to Philly because we feel that's where David will get the best care).

          Best of luck to you!
          Last edited by mariaf; 01-16-2008, 10:54 AM.
          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
            The Vepter

            Hi, I am new to the forum, but not new to the scoliosis world. My son was diagnosed with scoliosis at 12 months. We seen many doctors who gave us many opinions. We started out with bracing at Hershey medical Center in Hershey PA with no results then the doctor sent us to a hospital in Ohio and they wanted to put my son in a halo, which we were very much against. Finally our Dr. at Hershey said he knew of a doctor at Shriners in Philadelphia that might be able to help us. By this time our sons curve was 68 degrees and progressing. Dr. Betz at Shriners saw us a few months later and decided to try bracing also which didn't yield any results. At 22 months his curve was now at a 95 degree curve and we opted for the Vepter surgery (titanium rib surgery). Finally we had success. My son Quinten's curve went from a 95degree curve pre surgery to a 35 degree post surgery. We have had several expansions done and a second rod placement for a second curve which was a 98 degree curve pre surgery and post surgery it stands at a 45 degree curve. I know those curves sound very pronounced but there are children out there with curves in the 105-125 range. If you are looking aat the Vepter surgery, we have had great results with it and I know that is what I would do again. It what has saved my sons life and kept him out of a wheelchair. My son also has Neurofibromatosis which causes his bones to be soft, so he gets great benefits from the Vepter. There are many conditions that go along with the Neurofibromatosis but we thank the Lord that the only conditions our son has is the scoliosis and a minor heart condition. My son is soon scheduled for a replacement of the one rod. We have had two placements , one rod replaced and 6 or 7 expansions already done. If you are considering the Vepter and have any questions I would be happy to answer what I can. Good luck in your search for the best options.

            Comment


            • #7
              Hi Laura,

              I have been on SpineKIDS for a few months and finally got my account set up here. I also have a 5 year old daughter that has been diagnosed with scoliosis. She just got her brace yesterday and - so far - is doing well with it. I'm afraid that there is going to be a period where the "novelty" wears off and she starts to hate it, but for now we're thrilled that she is not fighting us with it. She has a Boston brace, and may need to get a diagonal shoulder strap with it after her next x-ray in four weeks. How is your daughter doing? Have you come across any "tips" along the way that you wish you would have known earlier?

              I hope things are progressing well for your family, and I'm glad to see that you have faith in God to help you handle whatever comes along!

              ~ Stacy ~

              Comment


              • #8
                Please look into Scoliosis Correction treatments

                My daughter was 6 yrs old when she was diagnosed with Adolescent Idiopathic Scoliosis. When her curve went to 20 degrees, her orthopaedic prescribed a brace. We thought there had to be something better than the brace. We found a site about Scoliosis Correction treatments. We felt we had to try it. It has worked for my daughter. Her curve is now 6 degrees!!! This was confirmed by her orthopaedic, who is not the doctor giving her the Scoliosis Correction treatments. A consultation for this treatment is usually free. I would encourage you to take a look at it. You can find more information about the correction treatment at www.scoliosiscorrectioncenter.com and to find a provider close to you visit www.clear-institute.com and click in as a patient and look for providers near you or something to that affect.

                Comment


                • #9
                  Gloria,

                  I'm sorry to be skeptical but I have never heard of a "scoliosis correction treatment". My son was diagnosed in 2000 and for the past 8 years I have read and researched a TON, and have spoken to many doctors, PA's, nurses, etc. as well as to probably close to a hundred parents.

                  As far as I (or any of these people) know, there is no treatment or therapy to correct scoliosis. Can you offer any proof that this "treatment" works? (other than from those who perform these treatments).

                  Again, I'm sorry to be skeptical but I'd hate to see anyone get their hopes up - or worse get ripped off - or even worse, forego a viable treatment option to look into this.

                  Thanks in advance for your reply.
                  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


                  • #10
                    [QUOTE=gloria1987]My daughter was 6 yrs old when she was diagnosed with Adolescent Idiopathic Scoliosis. When her curve went to 20 degrees, her orthopaedic prescribed a brace. We thought there had to be something better than the brace. We found a site about Scoliosis Correction treatments. We felt we had to try it. It has worked for my daughter. Her curve is now 6 degrees!!!



                    I, like Maria, have to comment about the above post. Idiopathic scoliosis in a 6 y/o is NOT AIS, it is juvenile idiopathic scoliosis. Also, I believe the more commonly accepted standard of care for bracing is 25-40 degree curves, not a 20 degree curve.

                    We were told at our Shriner's consults, (one with Dr Betz in Philly, the other in Portland with Dr D'Amato) for our 6 year old daughter with a 26 degree curve, that a few juvenile idiopathic curves are non-progressive, and if they are braced they will reduce quickly. I too would be extremely skeptical about some website promising correction.

                    Also, casting was mentioned above. We were told both by Dr Betz and Dr D'Amato that casting was an option available to us for our daughter.

                    Gayle
                    Last edited by leahdragonfly; 04-29-2008, 08:55 AM. Reason: incomplete comments
                    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


                    • #11
                      There is a thread elsewhere on this forum where several members express their frustration with CLEAR.

                      http://img5.glowfoto.com/images/2008...958193242T.jpg

                      I would also be skeptical about the "Scoliosis Correction Center". With any treatment, first find out what the basis is, and whether it makes sense. This Dr Hersh states that his treatment starts with the cervical spine, and he apparently puts the patient in a traction chair.

                      This sounds backwards to me in two ways. It makes more sense to start at the pelvis, the spine's foundation. That is where the Schroth method begins, and works upward. And traction is a passive technique. You aren't going to make permanent improvements with traction. Several chiropractors did that sort of thing with me and it was a waste of time and money. Chiropractic did help short-term with pain management, but physiotherapy helped long-term with the pain.

                      Maria, I am surprised that you think no corrections can be made. Have you these Before-During-After photos of Schroth patients? The 24-year-old woman's case was so bad that surgeons probably wouldn't have tried to correct it (due do impaired lung function), but the Schroth clinic managed to make significant improvement.

                      http://www.glowfoto.com/static_image.../img4/glowfoto

                      http://img5.glowfoto.com/images/2008...958193242T.jpg

                      These are dramatic, but not anomalous cases.

                      Comment


                      • #12
                        Schroth method

                        I spent thousands of dollars taking my son to learn the exercises for the schroth method. I bought all the supplies the belt, the pads the bars, the mirrors. Yes there is very noticeable improvement in his spine for all of 5 minutes after he completes a session (it was so wonderful to see his back so straight after he sat up. I cried) then he stands up and there comes the wave in his back again and the hump. So don't be fooled by before and after pics anywhere. We are now scheduled for surgery after many different braces and exercise programs. Atleast the bracing did give him more time for growth.
                        Last edited by terri watkins; 05-08-2008, 11:25 PM.

                        Comment


                        • #13
                          Thanks for posting that, Terri!

                          You may have saved someone a lot of money AND even more importantly prevented them from having false hopes which, as in your case, were quickly dashed. It's a shame that some folks in this world look to profit in that way - by praying on parents willing to do anything for their kids.

                          Bottom line - if there was a non-surgical way to cure scoliosis there would be nobody having surgery!

                          However, much like Santa Claus and the tooth fairy, a quick fix like that for scoliosis just doesn't exist - much as I wish it did.
                          Last edited by mariaf; 05-10-2008, 08:09 AM.
                          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


                          • #14
                            Terri, where did you have the Schroth therapy? Scoliosis Solutions? I am surprised that it had no effect. It is successful holding or improving the posture and abnormal curves in most cases, and surgery is seldom thought necessary. I know personal cases myself, and there is a significant clinical literature on this.

                            Maria, nobody purports that exercise therapy is a quick fix. It is a gradual, lifelong process.

                            Surgery is the quick fix. But surgery merely replaces one pathology, the twisted spine, with another -- the partially fused or fixed spine. Quite a few post-ops have to go back for more, just read the sad stories in the Revision section.

                            Any physiotherapy depends heavily on the individual's initiative. I fully accept responsibility for my own health.

                            I don't know where your contempt comes from. You cannot have done much reading about Schroth principles and practices. The clinic in Germany would not have been operating since 1961, now with 200 patients at a time, if there were not real substance to it.
                            Last edited by Writer; 05-09-2008, 04:29 PM.

                            Comment


                            • #15
                              Schroth method

                              We went to Maryland to learn the exercises from a lady that was there from Barcelona who was specifically trained in the schroth method. I know I have met others using the schroth method and their curves have continued to progress as well (they are also in brace 23 hrs a day with the only hr or so free of the brace is spent doing the exercises) Talk about quality of life. It doesn't matter where you go to learn the method as long as you have qualified people training you in it. Or oh, I see they must travel abroad for the cure to really kick in... is that it? Well we surely would have gone the extra mile if someone like you would have given us a money back guarantee ... I don't doubt that anything can happen and it may work for some, everyone is different. I appreciated the glimmer of hope I felt at the time. But, that is all it was.
                              I also revisited a site promoting the schroth method and this was stated on there from a physician: A consultant spinal deformity surgeon at the National Orthopaedic Hospital, Stanmore, Middlesex, Sean Molloy refers some of his patients for postural exercises with NHS physiotherapists.

                              Techniques such as scoliotherapy may have a place in helping patients who fall into a treatment grey area, he said.

                              'This method would be a good addition for well-motivated patients with a certain type of curve, for which surgery is not necessarily the answer,' he said. 'But a progressive curve which also has a bony deformity will need surgery.'

                              Some patients in their teens want an operation to flatten the rib hump and normalise their appearance, he says, but added: 'Surgery is not a cosmetic procedure - the aim is to stabilise the spine to prevent serious mechanical problems with posture and movement in later life.'

                              Mr Molloy is taking part in a Europe-wide initiative, the Scoliosis Deformity Study Group, which is developing a database on the outcome of different types of treatment for the condition.

                              He said: 'As orthopaedic surgeons, we welcome anything that helps to educate and support patients, providing it does not delay surgery for those who need it.'

                              I guess my son just didn't fall into the grey treatment area as his curve was very progressive. But, as he states don't delay surgery if you or your child need it and please don't stay in a denial stage so long that you cause your child irreversible danger.
                              Last edited by terri watkins; 05-10-2008, 04:21 AM.

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