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  1. #1
    Join Date
    Dec 2011
    Location
    Southwest, VA
    Posts
    5

    She has it at age 7

    Hi all - I''m new. Just a month ago I took my healthy happy girly daughter (7) in for a checkup, did the bend over thing, doc sent us for an x-ray (which I was sure was a waist), and there I stood in the x-ray room with utter disbelief on my face. (Trying all the while to be OK with my daughter there by my side.) No one in our family has ever had this and I don't know anyone who does. I even had to look up the word SCOLIOSIS to make sure I was pronouncing it correctly. We went to a specialist and have an MRI scheduled right after Christmas to rule out "tethered cord". She has 2 curves both between 20-30 degrees. I've done LOTS of reading to get ahead of my steep learning curve (mostly from the web). Wow-lots of scary stuff! I keep telling myself that folks don't post the good news stories.

    It's been really tough finding information, like how serious is 20-30 curves for her age, does this always get worse, why can't I find any good "children" books to read her. Through this first stage, I've been disappointed in the lack of information the doctors have provided us. Even for my daughter - she would be so in the dark if I didn't do my "homework". Why didn't the doc have a special little book to give HER. I've got her to start a little scrap book. It simply starts, my name is , , , and I am 7. Then each page adds a little about what she did. Like her x-ray page and her first doc apt. I'm going to let her take a camera to the MRI to take pictures. Right now she seams okay with it all-but she doesn't know what "could" be in her future. I look at web photos and read the brace stories and feel just sick for her.

    But for now-she is still a happy, healthy, girly girl who can't wait till Santa comes to town.

  2. #2
    Join Date
    Oct 2008
    Posts
    299
    Hi Kat,

    I would say we are one of the "good stories". Search my screen name and you can see my posts about my daughter's experience so far. She was diagnosed at almost 7. Even when she was wearing a full-time brace, it was OK for us. Everyone's experience is different, not set in stone. Please feel free to PM me. I am happy to help you with any questions you may have that I can answer. Chris
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  3. #3
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162

    you will get through this

    Hi Kat,

    My daughter was also diagnosed very young, at her 6 y/o well-child check-up. I had scoliosis as a teen so it wasn't completely foreign, but I also had a hard time finding information about the young children. If you haven't been given an official name, it is juvenile scoliosis.

    My daughter, like "G" in the above post, is also doing great. She will turn 10 in January and her curve is quite stable and minimal. We chose surgery because bracing was difficult emotionally at our house, but the Chris's daughter has had wonderful success with her brace, and now wears it only at night I believe. In fact, G (in the post above), and my Leah are now in basically the same place and close in age, although we have both travelled different treatment paths. Chris even kindly send me some brace shirts several years ago, and Leah still wears them nightly as jammies. We made sure surgery was a very positive event for Leah, and she remembers it without stress. For her it was a small price to pay to be rid of her brace. Each family will decide which treatment course seems most reasonable and acceptable, and with your help, your daughter will be just fine.

    I originally told Leah that she had a curvy spine, because at age 6, there was no reading material that was suitable for her. She later confided in me that she was afraid that her back was curved like a pretzel, so I drew a picture of about how curved it was. She was greatly relieved. After that I made sure she got to see each x-ray and have it explained to her, so she would not worry unduly. The worrying part was my part of the deal, and I sure did plenty of it!

    I would be careful to be as honest and truthful with your daughter as possible, while realizing that her questions may need just simple answers. If she needs a brace, she doesn't necessarily need to know it could be for years to come. She needs to know that for now the doctor thinks she needs to wear a brace (if it comes to that). She can know that it may be for several years, but at this age she can not comprehend the part of being skeletally mature, etc. I was careful to tell Leah that once she was done growing (with an example of a family friend she knew who was 14) that she wouldn't need to worry about a brace. I would also be very careful if she needs a brace to not make any promises or scary statements that the brace will prevent surgery. I know other parents who held out the fear of surgery as a way to increase compliance with the brace, then if the child progressed to a point of needing surgery, they were then unnecessarily terrified of it. I would try to stay very positive and in the moment when explaining things to her and answering her questions.

    Scoliosis in a 7 y/o is not common, so I would try to find the best orthopedic surgeon who sees many cases of juvenile scoliosis in young children. You may have to travel for this. Most of the Shriner's Hospital for Children are experts in pediatric scoliosis, so that would be a good place to start for a second opinion. We live in Oregon, but there were really no specialists here who saw lots of young JIS cases. We never dreamed we would travel across country for the best care, but we did end up traveling to Shriners Philadelphia, and later Leah had surgery at Shriner's St Louis, because these doctors were very familiar with juvenile scoliosis.

    Your beautiful, happy, healthy little girly girl is still happy and healthy and beautiful, and with your help she will get through scoliosis. I know Leah hates talking about doctor's appointments and boring x-rays, so I don't spend much time mentioning those things to her. I try not to look at her back more often than once between doctor's visits because I don't want to make her unduly concerned about her back.

    Please also feel free to PM me with any questions or if I can help you in any way. We are here for you.
    Last edited by leahdragonfly; 12-15-2011 at 05:13 PM.
    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

  4. #4
    Join Date
    Nov 2010
    Location
    British Columbia
    Posts
    918
    Quote Originally Posted by leahdragonfly View Post
    Hi Kat,

    My daughter was also diagnosed very young, at her 6 y/o well-child check-up. I had scoliosis as a teen so it wasn't completely foreign, but I also had a hard time finding information about the young children. If you haven't been given an official name, it is juvenile scoliosis.

    My daughter, like "G" in the above post, is also doing great. She will turn 10 in January and her curve is quite stable and minimal. We chose surgery because bracing was difficult emotionally at our house, but the child in the post above has had wonderful success with her brace, and now wears it only at night I believe. In fact, G (in the post above), and my Leah are now in basically the same place and close in age, although we have both travelled different treatment paths.
    Gayle, I've never quite understood the whole VBS procedure. Is it permanent, or is other surgery needed in the future when the child is at maturity? Perhaps you can explain. Thanks.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



    http://tinyurl.com/Elias-Before
    http://tinyurl.com/Elias-After

  5. #5
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,162
    Quote Originally Posted by Elisa View Post
    Gayle, I've never quite understood the whole VBS procedure. Is it permanent, or is other surgery needed in the future when the child is at maturity? Perhaps you can explain. Thanks.
    Hi Elisa,

    VBS is minimally invasive, non-fusion treatment for growing children with moderate (under about 30-35 degrees) curves. It involves placing shape-memory alloy staples across the growth plates of the curved part of the spine. These staples exert a pressure on the growth plates with the intention of slowing down the abnormal overgrowth of one side of the vertebrae. The procedure, in the appropriately chosen child, is meant to be a stand-alone procedure that harnesses the growth of the spine and prevents progression. It is like an internal brace, basically. It does not result in fusion, but the staples are generally left in permanently. The procedure does not harm the discs or limit growth. There are other non-fusion procedures, namely tethering, that are also being developed.

    Kat, sorry, I didn't mean to hijack your thread. VBS is certainly not the choice for everyone, although for us it was great. Bracing is also very commonplace especially for the juvenile scoliosis kids, and I have heard of a number of children your daughter's age who have had a lot of success with bracing. I would imagine that would be the first line treatment if her curves are closer to 25+. As long as her MRI is clear, has your doctor given you any treatment options yet?

    Good luck,
    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

  6. #6
    Join Date
    Oct 2008
    Posts
    299

    Couple more things

    Hi Kat, I would also advise you to take what you see on the internet with a grain of salt. When I have looked at photos of the type of brace my daughter has, they look NOTHING like her brace, which is very streamlined, with lots of giant holes in it. Sometimes the information is just too "high level", meaning it's trying to capture too much with one photo or one paragraph, and sometimes it's just plain wrong. I did exactly the same thing you are doing when I learned of G's diagnosis so I understand (we all do) how tempting it is to try to read everything about all the types of braces, growing rods, all the way to fusion. Try and take it one step at a time.

    20-30 degrees is a big range. 20*, maybe your doc says wait and see. 30*, likely brace range. Personally, I think juvenile scoli is a double-edged sword. On the one hand, there is more time for things to go wrong, for the curve to progress; on the other hand, younger children seem to have a flexibility that allows for a greater potential for stabilization or improvement, and remaining growth can be your ally. Try and breathe. As Gayle said, you will get through this, both the initial shock as well as the coming months and years. Chris
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  7. #7
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,903
    Hi Kat,

    Just to avoid confusion, Gayle meant non-fusion surgery. VBS = vertebral body stapling and in appropriate patients, removes the need for wearing a brace. The goal is to avoid fusion surgery with bracing or VBS surgery.

    Quote Originally Posted by leahdragonfly View Post
    We chose surgery because bracing was difficult emotionally at our house,
    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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