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Thread: She has it at age 7

  1. #1
    Join Date
    Dec 2011
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    Southwest, VA
    Posts
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    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
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    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 04:13 PM.
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  4. #4
    Join Date
    Nov 2010
    Location
    British Columbia
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    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
    NC
    Posts
    8,901
    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."

  6. #6
    Join Date
    Jan 2008
    Location
    Oregon
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    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 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  7. #7
    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

  8. #8
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Kat,

    You've gotten some very good advice so far like waiting for the MRI results and then getting all of the treatment options from your doctor, which probably will include, as Gayle mentioned, bracing as a first line of defense against curve progression. Other options (like VBS for example) would probably not even be on the table unless the curve was closer to 30 - and even then, you would probably be wise to give bracing a try first. And while I would not minimize the challenges of bracing because I have been there, some children adjust easier than expected and respond well to bracing in terms of holding the curve, which is definitely what you want to do - to keep the curve where it is and prevent progression, which is the aim of bracing.

    As was touched on above, it is extremely important to see a pediatric orthopedic surgeon who specializes not only in scoliosis but in JUVENILE cases. Some doctors treat mainly typical, teenage scoliosis patients - and the two conditions (JIS and AIS) are totally different animals.

    A good place to find a doctor specialized in scoliosis in younger kids is Shriners hospitals. Not sure if you have one near you, but my son has been going to the one in Philidalphia for almost 8 years and we can't say enough good things about the staff there. You should also get more than one opinion if you want, or if you're not satisfied with the plan of action proposed by the first specialist you see. In our case, for example, even though we were seeing a 'well-respected' ortho in NY, she did not specailize in JIS and so there were treatment optoins we didn't even know existed until we saw Dr. Betz (arguably one of the top scoli docs in the country) and his team at Shriners in Philly.

    Please feel free to e-mail me (e-mail address is in my signature) if you like and best of luck to you!
    Last edited by mariaf; 12-17-2011 at 11:22 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/

  9. #9
    Join Date
    Dec 2011
    Location
    Southwest, VA
    Posts
    5

    Thanks

    Thank to you all. Your advice and encouragement is very helpful.

  10. #10
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi Kat,

    I am pretty sure a camera will not be allowed near the MRI since it contains metal. If you call ahead to the MRI facility you can ask, that way your daughter won't be disappointed if she can't bring it in.

    Have you prepared her for what the MRI will be like? Some preparation ahead of time can go a long way in easing her through this, such as preparing her for laying perfectly still in the small tube, and for the variety of very loud strange noises (jack-hammer is one that comes to mind) that the MRI makes. Some anticipatory playing with her favorite stuffed animal or doll may make it easier for her.
    Gayle, age 49
    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)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  11. #11
    Join Date
    Dec 2011
    Location
    Southwest, VA
    Posts
    5

    MRI Heads up

    Thanks for the MRI heads up. My hubby had one on his leg recently and he shared the sounds and lying very still experience with her. I even pulled a picture up on the web and showed her what the machine looks like so she would know what it was. I explained that it would be "taking a picture" and wouldn't touch her or hurt at all . They have decided to sedate her as they expect it will take about an hour and they said they just can't see a 7 year old (even a good one) lying still for that long. I think that will be best. Although I'm unsure about how they will sedate - IV/GAS/PILL. I'm guessing IV - I plan to call the hospital to find more about that this week. An IV will be new to her - but she'll survive this small infraction.

    We've been making fun/adventurous of all her experiences so far. With excitement we'll say, "Today we get to meet your new special doctor - Yeah". And "Wow-how special it is that you get to have an MRI. Not many little girls get to do that. I can't wait to see what it will look like." So hopefully this will be more like an adventure and less like a nightmare. I'll explain to her about the camera/machine issues. We'll see what they let us do. Maybe we'll just take her photo with the nurse before the "event". This will be good to tell her so she won't be disappointed. THANKS.

  12. #12
    Join Date
    Oct 2008
    Posts
    299
    G was sedated with gas. Very easy. Only thing is they can't eat prior to sedation so try to get an early appointment--G's wasn't until the afternoon because they had to squeeze her in and she was starving...that was the hardest part of it for her.
    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

  13. #13
    Join Date
    Dec 2011
    Location
    Southwest, VA
    Posts
    5

    Mri

    Oh that's good news. I sure hope it's by gas. We have an appointment first thing in the morning so we are set to go.

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