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scoliosis, osteoporosis only 11 yrs old.

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  • scoliosis, osteoporosis only 11 yrs old.

    hello,
    I have posted on here before about my 11 year old daughter who has a 43 degree upper and a 35 degree lower. At that time she was going to be braced for a short period to allow for more growth before surgery since she is a risser 0. At that visit the doctor noticed her bones didnt look quite right and suspected osteopenia which is a pre-cursor to osteporosis. I took her to manhattan where there is a special dexa scan for children to measure bone density. In the interum the boston brace was made. on the day we were to pick it up I find out that my daughter has osteoporosis measuring a 3.5 which apparently is quite serious. Needless to say she can not wear the brace due to the possibility of verterbrae or rib fractures. We are now undergoing extensive testing with an endocrinlogist to try and find the underlying factor. The orthopedist suggests not doing anything at this time other then dealing with the osteoporosis and he will see her every two months to check the curve progression which has been very fast this past year surgery could be at any time as he doesnt want the curve to get to much worse. I feel like I am going to lose it and I dont know which way is up anymore any words of wisdom would be greatly appreciated.

    Many thanks,
    Linda

  • #2
    Hi Linda...

    Wow, I never knew that osteoporosis could affect children, although I had heard of osteogenesis imperfecta. You may have already found all of this, but here are a few links to helpful information:

    http://www.osteo.org/newfile.asp?doc...TML+Fact+Sheet
    http://www.noah-health.org/en/bjm/os.../children.html
    http://www.hmc.psu.edu/childrens/hea...teoporosis.htm
    http://www.vh.org/pediatric/patient/...eoporosis.html

    I hope that there's some treatment to stop the progression of the osteoporosis.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

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    • #3
      Linda,

      I was so hoping that you would see my post. You have been a tremendous help to me in the past as well. Thank you for the links I read them all and there is alot of information on them. I am so scared for her. it is bad enough having to face scolioisis surgery and now with this on top of it. It seems from the articles that the main thing now is to find the source of the decrease in the bone mass.

      Many thanks,
      Linda

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      • #4
        Hi Linda,

        I'm sorry to hear the latest news that your daughter has osteoporosis. I hope your ortho has experience dealing with patients (children) who have other medical issues, like osteoporosis. It's very important to have someone who knows what they are doing. Did they plan the scoliosis surgery before the osteoporosis was diagnosed? If so, maybe another meeting with the ortho to discuss options and plan of action would be appropriate, and hopefully give you peace of mind. I would be asking lots of questions about how the osteo would effect the fusion and device placement. Her curves are not horrendous, and maybe her body has just gone through a growth spurt, meaning the scoliosis will slow down in its progression... I'll keep my fingers crossed for this. She is very young to be having fusion surgery for scoliosis in a typical situation, and to add the osteoporosis means her situation is even more complicated. Have you considered getting more opinions?

        I'm thinking out loud, mostly. Please keep us posted and let us know how things go. Good luck with the testing to determine what's causing the osteo. We'll be thinking of you.
        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/

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        • #5
          bone density

          Hello!

          I read your post and noted "bone density." Stickler Snydrome is a syndrome which is a bone density issue and scoliosis occurs also. I know so little about, and I'm sorry for even mentioning it; but I have heard of the syndrome. Has that been discussed, or possibly it's not even an issue. Again, I'm sorry for bringing more to the table for you. But . . . . . I quess it's sorta rare.

          I'll be looking for your posts, hope you find your answers soon.

          pat

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          • #6
            Dear Pat and Carmell,

            Pat, thank you for the info believe me I want to research all the possibilities I did look up stickler syndrome at this time she doesnt appear to have any of the other symptoms that are described but I have written it down to pass it by the endocrinologist when I see him on Feb. 7.

            Carmell,
            My orthos original plan was to brace amanda to hopefully stop further progression until she grew some more. When the osteo came into play I did have a brief phone conversation with him and that was when he suggested that at this time she should just be monitored. Basically I was told that due to the location of the curve and the fact that it went from a 12 to a 43 in 2 years that progression is inevitable. I am seeing Dr. Lonner who is at scoliosis associates in NYC. I do have the utmost of confidence in him. He said that he has done surgery on others with poor bone density and I believe he said that screws were used and there were a few other differences. I am seeing him in early march, at that time I will have a list of questions for him If you think of anything I should ask him besides the obvious please let me know. I see from your post that you have had many issues with your children how do you deal with it. Sometimes I get so overwhelmed with fear of the unknown that I cant take it.

            I want to thank you all for your kind words, and your thoughts and I will post again as information becomes available.

            God bless,
            Linda

            Comment


            • #7
              Hi Linda,

              Thanks for the details. The part about putting screws into the bone structure is what I would be concerned about with young children, especially with the osteo issue now playing a part. There is a relatively new procedure where titanium rods are placed to support a curved spine, but they are not attached to the bone with screws or anything invasive into the bone material. I wonder about this for her... but then again, I wonder if the type of attachment done would not be condusive to the osteo situation... interesting... something to look into for sure.

              Maybe some of the obvious questions to be asking would include getting information on her long term prognosis. Will invasive fusion surgery now cause a problem later? Will her body recover well from such an invasive procedure? Does she need to have more time to allow the bone structure and skeletal frame to mature? What other options can we look into? etc.

              You mentioned my children and their multiple issues... my daughter is a typical teenage girl with idiopathic scoliosis. She also has hypothyroidism which has been well-controlled with medication. My middle child is my "healthy" one. He is 14 and just had his tonsils removed 2 days before Christmas (2 weeks ago today actually). He gets "ignored" sometimes because he doesn't have any "issues"... LOL Good thing he has a good, even-tempered personality. My youngest (Braydon, age 9) was born with multiple birth defects, mostly orthopedic and structural problems. If you saw him on the street today, you would never guess what his little body has been through. We have been fortunate to benefit from medical technology. He is active and healthy and loves life. Without medical technology today, he would likely be sickly and wheelchair bound and maybe even worse. I count my blessings everyday. I'm not any stronger, emotionally, than any other parent. I do what everyone else would do - try to give my children the best care possible. Sometimes that means traveling away from your comfort zone. We went to Texas 3 years ago to see if they could help Braydon, because our local docs didn't have the technology. Thankfully they were able to help him. Now, our local docs have this technology and are even training new docs all the time. Nice to know someone cares. That helps a lot.

              Sorry to ramble on and on... I sincerely wish you the best. Please let us know what the endocrinologist thinks about your daughter. It will be interesting to hear. Good luck with everything else too!
              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/

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              • #8
                Carmell,

                Your children are very fortunate to have such a great mom and one who is so informed about so many things. Thank you for the list of questions I will write them down. Even though the scolioisis issue is old news the rest of it is so new to me and therefore very confusing at this point and as you mention they kind of do affect each other. I will post again when i know something new.

                Best wishes and many thanks.
                Linda

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                • #9
                  Dear lin,
                  I am so sorry you have to deal with yet another issue besides the scoliosis. I don't know how Carmel does it either.
                  I will be watching for your posts and praying for your daughter.
                  I don't have any input except to say that I really understand all the emotions you are going through like most moms here.
                  Good Luck and stay strong, the Dr's will find a way i'm sure.
                  mamakay
                  now 16 yr old daughter
                  with worsen 65 degree upper curve
                  surgery Nov 3, 04

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                  • #10
                    mamakay.

                    thank you so much. The kind words and support on this forum are priceless to me. I will keep everyone updated as I get the info I am so desperately in need of.

                    God bless all of you and your families,
                    Linda

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