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Thread: Our 7 yrs old daughter has scoliosis, looking ofr others in the same situation

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  1. #1
    Join Date
    Jun 2010
    Posts
    23

    Our 7 yrs old daughter has scoliosis, looking ofr others in the same situation

    Hi
    I am new here and our daughter was just diagnosed with scoliosis this past March, from x-rays. We got into a scoliosis speacialist in Edmonton Alberta Canada and her doctor is Dr.Hedden.
    He wanted her in a Boston brace, due to her young age and double curves. Her upper right curve was 28 degrees and her lower left one was 19 degrees.
    He said he considers anything in young children espeacially, over 25 degrees should be braced.
    He is not very partial to the wait and watch approach and we as her parents tend to agree with this.
    So this past June 9th she got her new Boston brace, which she is going to have to wear 22-23 hrs a day till she stops growing. If I start to think ahead long term it becomes very daunting and scary.
    So far its not her favorite thing but seems to be managaing. We are up to 13 hrs in it however this is with her sleeping threw the night in it. She seems to do way better at sleeping in it than wearing it while awake. It seems to be more bother some and uncomfortable to her in the day hrs.
    I really do feel for her but I can only stand by and watch and be as supportive and loving as possible. She is not in any way embarrassed by it so far. She has even taken it to her grade 2 class for show and tell and has told her class about her scoliosis and that next yr she has to wear it to school. I truly hope she feels the same way when this time comes.
    Her dad and I try to keep it all positive and keep our worries and such to ourselves.
    She was quite excited to get to pick a leopard skin patten for her brace, which she calls "Cleo"
    she loves going to see the speacialists and seems to be for the most part happy.
    Though she has a red mark on one of her pressure points which is a bit tender and bothersome during the day to her. We have just recently been able to adjust the bottom strap of the brace all the way but not quite there on the upper one which squeezes her rig cage area. We were told to take it slow and follow the schedual of wearing it to wein her slowly into it.
    I cannot see the day she will actually be comfortable and not ask to take it off after a couple hrs wear in the day. Breaks my heart but onward we must go.
    By the way my husband also had scoliosis as a 12 yrs old, so our daughter inherited her scoliosis. He actually ended up getting his back fused at 13 yrs. So fingers crossed all goes well for her.
    I was wondering if there wereany other 7 yr olds with scoliosis out there that my daughter could maybe relate with.
    Sorry this was soooo long.

  2. #2
    Join Date
    Oct 2008
    Posts
    299
    Hi Mommycat, my daughter was diagnosed at age 6, a few months before her 7th birthday. That was 2 years ago (almost exactly). She is finishing 2d grade this year, so is in the same general age group as your daughter. We have had a very good experience and outcome so far with bracing. My daughter does not wear a Boston brace, she wears a Rigo-Cheneau brace. She wore it full time for 15 months and now wears it part-time. We are big fans of the Rigo-Cheneau and are very happy with the results she has gotten with it. I have a thread in juvenile, entitled "Rigo-Cheneau update for G" or something similar. That said, though the brace my daughter wears is different, much of the day to day experience of full-time brace wear is the same and I would be happy to answer any questions you or your daughter have regarding bracing in general, as well as any other questions you may have. The first few weeks are the hardest and it sounds like your daughter is adapting well.

    Chris
    Last edited by mamandcrm; 06-20-2010 at 08:20 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

  3. #3
    Join Date
    Jun 2010
    Posts
    23
    Thanks so much.
    I am not sure we have that particular brace in Canada or rather if our doctor deals with it.
    I know they have just recently got the Providence brace only worn at night, but have yet to get any data of their own on it. However its good to know it could be an option for her later on.
    She has been in it for 11 days now up to 13 hrs, though this is accomplished at night mostly.
    Did your daughter have any tender or sore areas that were red?
    My daughter is quite slender and really has no extra padding of her own, just skin and bone. One of her pressure points has a pink area that will not go away. We took her and her brace into the orthotist and they shaved down some of the padding in that general area and did not seem too concerned over it. I suppose its going to happen till her body gets used to the brace and her skin toughens up.Given the areas has been irrated it may take a bit to feel better.
    It just makes me sad and frustrated that she says it hurts and needs it off to get a little rub.(which we do)
    Did your daughter experience this? Does it really get better?
    Thanks for your advice by the way.

  4. #4
    Join Date
    Jun 2010
    Posts
    23
    I saw your daughters x-rays, amazing. I never realized their brace time could change as their backs possibly straightened out.
    What is the difference with a cheneau brace vs a boston?, if you do not mind me asking.

  5. #5
    Join Date
    Oct 2008
    Posts
    299
    Hi Mommycat,

    I'll try to answer some of your questions here, then send you a PM about the rest. It's not unusual for your daughter to have sore spots and rubs--she's just getting started with the brace and it may take a little time for her body to get used to it. Some people recommend using rubbing alcohol on sore spots as a means to toughen the skin. We never had to do that as any sore spots my daughter had were always well managed with adjustment to the brace. Taking the brace back to the orthotist was a good idea. Hopefully they will help you work out any kinks in it. My daughter also swears by the undershirts made specifically for brace wear. She will wear nothing else under her brace.

    As far as your daughter finding it difficult to wear the brace long hours during the day-time, it is early days yet. That was not a problem for us, partly because G already was used to part-time brace wear, and partly because she did not find the RC uncomfortable. It sounds like your daughter has a good attitude, and your support and calmness are helping her a lot. The Boston brace fits differently than the RC, and it is my understanding that it squeezes the torso/rib cage more, making it uncomfortable for some children but I think most adapt over time.

    My experience/knowledge of juveniles getting significant correction with brace wear is limited to those wearing the type of brace my daughter does. I am not aware that it is something that can be expected with a Boston brace. The field of juvenile scoliosis is very underresearched in my opinion, and my personal belief is that more may be possible for juveniles than for adolescents if you can find the right approach for your child.

    I'll send you a PM with a little more info about the RC, where it is available in Canada, etc. Feel free to post any more questions. There are lots of people here who can help with day-to-day brace issues.
    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

  6. #6
    Join Date
    Jun 2010
    Posts
    23
    Thanks so much, yes my daughter too has a few of the BostonT-shirts made for her brace. Very expensive though.
    OUr orthitist also gave us a box of 100% cotton stockinette tubing ( like the stuff they put on her when she got the cast for the mold for her brace) he said its more of a one time use thing, just cut off what you need. Its another option to use underneath and a little thinner and cooler. But we are waiting for her to become more used to wearing her brace before we use that.
    Yes her brace is quite tight around the torso and rib cage area. At first she said it was hard to breath, but I think she is getting better with that part.
    Thanks again and I will look at what you PM me as well.

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