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New Here-Daughter with Severe Scoliosis

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  • New Here-Daughter with Severe Scoliosis

    Our dear daughter was adopted last year. She is 4 years old and has severe scoliosis--her curve is over 100 degrees. She has been wearing a TLSO brace to help her with her balance. I have a question regarding growing rods for those who have had them placed. Did it help your son or daughter with weight gain???

    Also, would you share your experiences with growing rods or VEPTR. Our daughter is very thin, and he doesn't think she would be able to support the VEPTR rods and is leaning towards the growing rods.

    Thank you for your responses.

  • #2
    Hello and welcome.

    I'm sorry about your daughter's diagnosis.

    We have a few people here with experience in this but it is only a very few. I hope they see your post. Because there are so few posters here who have mentioned VEPTR and growing rods, I think you might want to try to find a forum that has many more folks with experience with this. I hope you stay here also but I'm just saying it's a very few people. Though few, these people could probably point you towards other sites with more people posting about these issues. I am guessing they must exist only based on the slow traffic here.

    Last, The Shiners Hospitals, in Philadelphia and elsewhere, have some top shelf guys in dealing with these types of pediatric cases. It couldn't hurt to get an opinion from them.

    Good 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."

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    • #3
      casting

      I recently read of a treatment for very young children with scoliosis that involves body casting. Don't remember who it was, but is was from a google search. It sounded amazing and gave long term results. Kids didn't need surgery. Maybe it is worth searching for?

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      • #4
        Hi,

        I believe that site you are referring to can be found by going to www.infantilescoliosis.org - from there if you click on "links" there is a link to the C.A.S.T. discussion group.

        Best of luck to you!
        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/

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        • #5
          Hi There,

          I am also in a group for (mostly) parents of kids with congenital scoliosis. I don't know if your daughter's scoliosis is congenital or not, but you might want to check out this group, regardless. There are many parents on there who's kids have growing rods, VEPTRs and they've also had many other surgeries and procedures to improve the quality of their kids' lives.

          Here is a link to it: congenitalscoliosissupport@yahoogroups.com
          Since I'm not the most tech-savvy person, so my kids tell me, I think you'll have to paste the link into your browser because it's not a real link.

          Good luck and I hope you find the answers and treatments your daughter needs. I'm sure you will.
          Laurie

          Mother of Alexander & Zachary:
          Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
          Zach is 13 years old and very energetic.

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          • #6
            Website

            Try Veptr.com for an in depth forum on the VEPTR rods.

            Comment


            • #7
              when Ben was 4 he had a 38 degree curvature, he was small for his age & we were still searching for a diagnosis to his physical/behavioral/mental situation-

              we put Ben on a nutritional drink 2 X day as he was too little & not recieving proper nutrients & kids vitamins were not sufficient

              since then Ben was diagnosed with a rare syndrome called SMS (Smith Magenis Syndrome) , over 3 years had tried 3 TLSO body braces to slow down or stop his curvature (did not work - he is 10 yrs old & has a curvature of 96 degrees) & now needs to have surgery to put in titanium rods -
              my husband is still upset that Ben would be put in pain & has not totally given the go ahead as he loves our little guy & doesn't want to hurt him

              anyway the main reason for my post was to suggest that your little one be placed on the nutritional drink (pediasure, boost or thrive are good examples) they come in many flavors & it is amazing how much bone denisty & strength Ben has now - he still has 1 or 2 drinks a day depending on his food intake - just a thought
              good luck, Nancy

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              • #8
                Tests?

                Hi Nancy,
                My son, Andrew is small and it was suggested that he start protein drinks. I am wondering what tests your little one had that showed that he had increased bone density and strength. I would love to get him tested now and then later on after several months. Thanks for any info!

                Patti

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                • #9
                  Hello Patti,
                  I never had testing done - it is a long story but it was a very difficult time as doctors were not believing our son had a medical condition & we were taking matters into our own hands -my son has a syndrome & has a difficult time swallowing food, so his diet was very limited & we was severely concerned with his small stature - alot of the 3 yr olds were much bigger than my Ben when he was 4 & he was not progressing
                  I went to our pharmacist & spoke to her about my boy being on vitamins & she suggested the nutritional drink as he would get a recommented daily intake of vitamins, proteins & minerals & he could swallow it.
                  Then she asked if I had medical insurance - I had Bens' Dr. fill out a prescription & he has been on them since - when the geneticist saw Ben (now 10) a few months ago he was very happy with Ben & his structure (except the scoliosis). Ben is very strong both in his upper body & his legs but we did not do density testing.
                  Hope this helps a bit - I have learned that if I want something done for my son I have to ask/enforce it! but I always do it in the most polite & respectful manner so the professionals don't cuss/run when they see us coming LOL -- hoped to talk again soon - Nancy
                  Last edited by nancystreasures; 08-07-2009, 08:19 PM.

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