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Thread: New to this and looking for advice

  1. #1
    Join Date
    Nov 2010
    Posts
    2

    New to this and looking for advice

    Hi I'm new here. I have a six year old daughter who found out in June she has Scoliosis. Her Dr. took x-rays and told us to set up an appointment with a pedi ortho. She had her ortho appointment last week. They told us she should be braced because she has a 21 degree curve on the top and a 25 degree curve on the bottom. We go and have her fitted for her brace next week. We are all a little scard expecially Ashlyn. Everything seemed to happen so fast. Does anyone have any advice on how I can help prepare Ashlyn for whats to come? Thank You

  2. #2
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Momo,

    I’m sorry to hear of your daughter’s diagnosis. There is nothing that can prepare us for this sort of thing, but we do what we have to do as parents, and you will be amazed at how strong your are

    My other advice would be to take things as they come, one day at a time, and try not to ‘project’ too much about what the future might hold because none of us really know what is to come, good or bad.

    I would also make sure that the pediatric ortho you are seeing is familiar with JUVENILE scoliosis and does not just treat mainly adolescent scoliosis, because the two are very different. A lot of orthos (including our former ortho) are 'pediatric' orthos, but do not necessarily see a lot of very young children with scoliosis. Rather, their practice might consist of the more common scoliosis cases (teens and pre-teens).

    My son was braced full time when he was younger, for about three and a half years, so I have some experience with bracing. Please feel free to ask me anything. If you like, you can also e-mail me (my address is in my signature).

    Best of luck to you and please keep us posted!
    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/

  3. #3
    Join Date
    Oct 2008
    Posts
    299
    Hi there, my daughter was braced full-time for about 15 months when she was 7-8. She was part-time before that and is part-time now. She adjusted to all of it and handled it amazingly well. She really surprised me. Just be there for her and try to help her not be afraid. It's not fun wearing a brace but it's not the end of the world. She'll adjust and you will too, and you will soon know so much more and it won't seem so overwhelming. You'll find a new normal. Feel free to post any questions or PM.
    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

  4. #4
    Join Date
    Oct 2009
    Posts
    89

    Understanding Braces

    Momo

    My daughter is 9, first diagnosed at 7 with a 23 degree curve. It was recommended to not brace, and just watch it. Very quickly, while still 7, it increased to 36 deg. So, bracing right now is a very good idea, to be safe.

    There are many options around bracing: full-time vs part-time

    And there are hard braces and at least one soft brace:

    hard braces:
    Providence
    Charleston
    Boston
    Chenea

    soft brace:
    SpineCor

    It would be good to read about these braces so you can ask the doctor questions about them. My daughter wears a SpineCor brace and Boston brace. I know that when she was fitted for the Boston brace I read the Boston brace manual before we went. It was helpful in coming up with a bunch of questions to ask the doctor and orthotist, especially around how it fits and how to care for it and her.

    Here is a good link to these manuals:

    http://www.srs.org/professionals/bracing_manuals/

    And Maria's comments about juvenile vs adolescent scoliosis is very important. Most studies, and often doctor recommendations, are based on adolescents (10 yrs. and older). There are almost no brace studies for juveniles (6-9 yrs old).

    The good news for juveniles is that there may be the potential for some curve reduction. The primary goal of bracing is to stop the curve progressions. But there have been many cases of the curve being reduced with juveniles.

    To try and get some curve reduction, in-brace curve reduction is very important. I have heard that a 20% in-brace reduction will not stop a curve from progressing, a 40% in-brace reduction will stop it, and more than 40% is required for any potential curve reduction. Of course this will vary by child. I mention this only so you can have this discussion with the doctor and orthotist and get their recommendation.

    When my daughter was fitted for her Boston brace she was about 30 deg out of brace and about 13 deg in brace.

    My daughter was 8 when she got the Boston brace. It was not easy. It took time. I was with her all the time. There are moments of tears (for both of us). I held her a lot through all of it.

    And she may need some larger clothes to go over the brace, so you can have fun shopping for some new clothes!

    Please let me know if you have any additional questions.

    Mike
    Last edited by michael1960; 11-27-2010 at 06:16 AM.

  5. #5
    Join Date
    Nov 2010
    Location
    San Diego, CA
    Posts
    104
    momo,

    welcome to the forum. my daughter and i are just a few months ahead of you, she has recently just started wearing a TLSO. i agree with all of the other's advice for you. I'd add some prep for your daughter for the day she gets her body mold taken at the first appt with the orthotist: she will have to wear a body stocking, two actually, and have her body wrapped up like a cast but she will only be in it until it dries, about 5 minutes then it will be removed along with one body stocking which will stick to it. then she can get dressed! another word of advice is to find the most experienced orthotist in your area to go to, someone with experience working with children and scoliosis! the brace maker is an artist in a way, and a skilled technician. you want the best! your daughter will probably be able to choose the color or designs for on her brace. my daughter enjoyed that part. hope that helps, contact me any time.
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  6. #6
    Join Date
    Oct 2008
    Posts
    299
    Just FYI, not everyone plaster casts their braces now. Some are "off the rack," and ordered based on measurements then modified to the child with heat molding, padding and trimming. Others use CAD/CAM technology that involves scanning the body image into a computer and modeling based on that image. My dd has had an "off the rack" (Providence) and the rest were CAD/CAM. May want to ask in advance what your orthotist has in mind. And I agree completely that you want the most skilled orthotist you can find. It is an art. I believe it can make a huge difference, though there are many who would not agree with that.
    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
    May 2010
    Posts
    49
    My daughter also had computer scanning done to fit her for the brace - no plaster needed. Here's are a couple of pictures of it being done:

  8. #8
    Join Date
    Nov 2010
    Posts
    2

    Thanks for the advice

    Thank you to everyone for your advice it is very helpfull. The docter that my daughter is seeing is very good she does have experience with Juvenile Scoliosis which is a plus, and she knows alot about Ashlyns medical history. Ashlyn had trigger thumb on both hands when she was born and this docter is the one who did the surgery for her. Ashlyn is starting to feel better about getting her brace. We bought her a note book and every nite we sit down and she tells me how she is feeling and I wright it down for her, then she will draw a picture to show how she feels. She is excited that she will be able to pick out the color of her brace, and all we do now is take things day by day and hope for the best. Thanks again to all of you and we will keep you all posted. Tammy

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