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Thread: Four Year Old in Providence Brace

  1. #1
    Join Date
    Jun 2005
    Posts
    4

    Four Year Old in Providence Brace

    Hi -

    I am hoping someone out there can offer some advice.
    My daughter (now age 4) has been monitored for ideopathic
    scoliosis since age 2. At that time, she compalined that her
    back hurt. Her Pediatrician dismissed it to nothing more than
    just a toddler trying to get her mom's attention. After a few
    months of consistent complaints, I forced my Pediatrician to
    do an xray. The xray revealed an very minimal 12 degree
    curve. It was explained that the curve would not be causing pain.
    Just to be safe, we took her to a Pediatric Orthopedic who began
    watching her for the next two years. During this time, the curve
    progressed from 12 to 15 to 18 to 24. This is where we are now.
    She is four years old, and has a 24 degree curve. She was recently
    fit for a Providence brace and is wearing it at night. We have
    been told that she will likely be wearing this for the next 10 - 12 years.

    I know most individuals are diagnosed with scoliosis as adolescents, but is
    there anyone out there who has experience with being braced for a long period of time?

    My daughter was the youngest patient in the Orthopedics practice
    to ever be braced for ideopatic scoliosis, so I have not been able to get any experienced advice in that regard.

    Any advice would be helpful.

    Thanks.

  2. #2
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Welcome to the board.

    Scoliosis in infants and young children is rare, but not unheardof. If your daughter is the youngest in the ortho's practice, I'd be getting another opinion from a pediatric orthopedist who specializes in scoliosis in young children. Yes, there are a handful of these specialists out there.

    You mentioned that you had her checked because of back pain. Back pain in young children is not common either. Maybe it would be a good idea for you to find a doc who will help you figure out the source of the pain (a moderate curve of 24 degrees shouldn't be causing pain). There may be something more involved going on that is contributing to the scoliosis.

    Has your daughter had a full spine MRI to rule out any spinal cord anomalies? With the pain you mentioned, and the progressing scoliosis, it wouldn't be a bad idea. Hopefully you can find a pediatric neurosurgeon to read the scan to rule out any problems.

    There is a good email list for parents with young children who have infantile scoliosis - you can find the group in the Yahoo listing under "infantile_scoliosis". Also, you can read about other small children with infantile scoliosis at http://www.infantilescoliosis.org

    Good luck and keep us poste.
    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/

  3. #3
    Join Date
    Jun 2005
    Posts
    9
    I'm sorry to hear about your daughter.
    You should explore your other options with braces, do some research. What the doctor says is not necessarily the only option. Often doctors do not mention better alternatives because they might be more expensive or just not publicized.
    My doctor told me to get a Boston brace, but my mom did some research and found Spinecor which is much more effective and more acceptable to the patient. I'm not sure if Spinecor will treat infantile, but I would check.
    Best of luck,
    Bonnie

    Bonnie, age 13, S curves of just under 30 degrees. Has been wearing Spinecor brace 20 hours a day for 1 year, should get it off May next year. The brace has been very effective.

  4. #4
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,794
    Alyssasmommy...

    I'm with Carmell. I'd encourage you to push for an MRI. Back pain in young children is fairly uncommon, and can be a symptom of other problems. I know that I've read that an MRI should be ordered for young children with scoliosis who complain of back pain, but for the life of me, I can't remember where.

    Regards,
    Linda

  5. #5
    Join Date
    Jun 2005
    Posts
    4
    Thanks for the input, but I guess I should have been more clear.

    The back pain was just the "insignificant" reason we
    found out about the scoliosis when we did. She has not complained about
    any back pain in about 18 months. (Roughly just after they
    found the 12 degree curve). Since any ideopathic curve is
    uncommon in young ones, we did an MRI and a CT to rule out
    any tumors or abnormal fluid in the spinal column that could have
    been causing a curve. All of which came back negative. (Thankfully).

    Also, after the brace therapy was recomended, I took her to a second pediatric orthopedic for a second opinion, who concurred. After that, I got her approved as a Shriner's patient, and went to see what they had
    to say. Shriners also concurred with the diagnosis and treatment plan.
    After all of that, we opted to switch her treatment to Shriners as they have
    more experience in dealing with the younger patients. The initial pediatric orthopedic that made the diagnosis was great, and she had several young patients who were braced, they just had other underlying medical problems driving the scoliosis.

    In any event, we are now on a every four month treatment plan with Shriners.

    I was just mainly wondering if any of you out there had experience in dealing with the brace on such a young child. It is so hard to get her to understand why she has to do this, I know why, and if she were 13 I could explain it, but since she is only four, it is a challenge.

    Thanks in advance for your advice.

  6. #6
    Join Date
    Jun 2005
    Posts
    9
    Well, you could draw pictures for her. That might make it easier for her to understand. I would draw and tell her that her back is curvy when it is supposed to be straight, then draw a picture of how the brace pushes her back in to straighten it. That might be simpler for a four year old.
    I would remind her that if she wears her brace, her problem will be fixed.
    Good luck, hope that helps.
    Bonnie, age 13, S curves of just under 30 degrees. Has been wearing Spinecor brace 20 hours a day for 1 year, should get it off May next year. The brace has been very effective.

  7. #7
    Join Date
    Jun 2005
    Location
    Manitoba, Canada
    Posts
    73

    Thumbs up Good idea!

    Drawing pictures always helps.
    In fact, that's how I keep my daughter AND my fiance informed about what's going on.

    It's hard for some people to understand, especially when they've never heard of scoliosis. I work at a hospital and have had to explain it many times to the people I work with.. and the pictures are always the thing that finally makes them nod and go "Ah! I get it!"
    Age 28
    diagnosed at age 12
    wore a boston brace until age 14
    No surgery, was on "wait and watch" till recently. Got a SpineCor (Jan 27th) to help ease the pain.
    T-curve 73 degrees with severe rotation (curves to the right)
    L-curve 45 degrees with slightly less severe rotation than my T-curve (curves to the left)

    1994 - 5'10" - T-?/L-? (i forget what they really were)
    2006 - 5' 4" - T-56/L-40
    2008/09 - 5' 4" - T-73/L-45

  8. #8
    Join Date
    May 2005
    Location
    UK
    Posts
    26
    Hi

    My daughter has also recently been given a brace. She is nearly 4 yrs old. Her scoliosis was also diagnosed at 2 yrs, but was only 25 degree curve then. Recently it increased to 45 degrees (hence brace).
    Anyway she loathes the brace, and started telling me she didn't like me anymore, every time I put it on. So I explained that she was a bit like the sunflower she had grown in the garden, that when it started to grow a bit "wonky" we had to put something beside it to straighten it up!
    I was also advised to build up her tolerance to it by starting off on first day with 15 minutes, next day 30 minutes etc. She is up to 3 hours now, still doesn't like it, but has stopped crying and fighting me when it's time to put it on. She has also found "sitting" unconfortable, and it seemed that the brace is actually too long at the back, her physio agreed, so it is going to be altered this week.
    I noticed a newspaper pic of a woman in a brace and pointed it out to her. She was absolutely fascinated, and strangely it seemed to cheer her up. Maybe showing pics of other kids in braces might help (knowing you're not the only one etc).
    I have also found that my daughter has a tendency to just lie around on the sofa moping when the brace goes on, so I try and keep her active with a trp to the park or something like that.
    Decorating brace with stickers seems to help as well!
    Hope this is useful!

  9. #9
    Join Date
    Feb 2004
    Location
    Perth, Western Australia, Australia
    Posts
    299
    Just an idea, could you and your daughter 'make' a brace for one of her dolls or Teddies out of plastic milk cartons, velcro and thumb tacks (or something similar). I've seen similar things done to help to explain to young children in hospitals why they need a procedure or an operation done.

    I like the idea of explaining it like the growth of a flower / sunflower growth. Mum said I asked her one day "why do I have to wear a brace and Suzanne (my sister) doesn't". She said she stopped the car, turned around and explained, using her finger, You're spine looks like this (bent finger), and we are trying to get it to look like this (straight finger) and the brace is helping you become all nice and straight. Mum said I was satisfied with that :-)

    Alison

  10. #10
    Join Date
    Jun 2005
    Posts
    4
    Thanks everyone for your encouraging words. I will definately have to
    try to make her one for her dolls, as the other morning she was putting
    her brace on her baby doll (well you can imagine what that looked like!).

    Anyway, it is nice to know she is not alone. So many people get so shocked
    when I mention that she has scoliosis -- they just think of it as a teenage
    disorder.

    Cheers and Love,

    Denise

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