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Thread: update on 3 yr old in brace

  1. #1
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    update on 3 yr old in brace

    Emma now has her brace. We have been working on 15 minute tolerance build up, and she is now up to 3 hours. It is a bit long at back, so is being trimmed this week to make sitting more comfortable.
    She loathes it and initially was crying and fighting me every time it went on (told me she didn't like me anymore etc). I explained to her as best I could the reason for wearing it, and it seems to be getting a bit easier...no more tears and fighting at least. She enjoyed decorating it with stickers.
    Her curve has increased from 25 degrees to 45 degrees....so that was why they made decision to brace.
    She tends to get very mopey when it's on and just wants to lie on sofa, I try to keep her active with trips to park etc. but it's proving difficult. Any tips appreciated on that one?
    I also noticed that she was fascinated (and a bit cheered up) by seeing a pic of a woman in a brace in the newspaper. Has anybody ever tried getting their child together with other kids in back braces? If so did it help them at all?

  2. #2
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    Hello! I know it must be really tough making a three year old wear a brace, but it sounds like you are doing a good job.
    I would suggest implementing a reward for when she wears the brace (she may be a little too young to understand the long term effects). Maybe, tell her she can choose something to do (like go for ice cream, etc) but she will need to wear her brace.
    Or, I don't know if she is supposed to be active in her brace, but maybe it is easier for her to wear it during a nap or through part of the night. I was in a brace for a year, and I found it difficult to do much of anything but lie down or sleep.
    Good luck!
    Harrington Rods in 1991 at age 15
    Surgery at Scottish Rite in Dallas, TX

    Fused from T-4 to L-3

  3. #3
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    Perth, Western Australia, Australia
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    My Mum was reading over my shoulder and she suggested for trying to get your daughter more active is lots of gentle encouragement, and lots of praise (hugs and kisses) when she's been up and about. Mum also suggested that perhaps for time she's been up and about that she could perhaps get to put a new sticker on her brace (ie the really sparkly and cool looking stickers)

    Alison

  4. #4
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    Hi Rachael and Alison,

    Thanks for advice. Emma is supposed to wear her brace for a minimum of 15 hours a day, but aiming for 22/23 hours if poss. Hence my concern about her activity levels. But I am going to try for our first night session....if it goes well that would eat up nearly 12 hours of "brace-time"...if I try and schedule it for nap time too that would be another hour or so, we would nearly be on "minimum" time then!

    I'm also going to shop for some extra-special stickers, for brace-time only.

    Does anybody know of any international mail order source for "Royal Knit" undervests? I was told they are the best thing to put under the brace to stop chafing. Emmas orthotics dept knew nothing about them, and I can only find a U.S site which doesn't seem geared up to overseas orders (we live in UK)? If not can anybody suggest any good alternative that fits a little one without riding up or wrinkling?

    All suggestions appreciated!
    Thanks

  5. #5
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    Kannapolis, North Carolina, near Charlotte
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    body sock

    Emmasmum, I got body socks from my daughter's brace maker. She ordered them at my request and my daughter loves them. I'll see what I can find out for you. They are around $40 or so each in the US, but I find them worth it for my daughter's comfort. Also, my daughter refuses to go without her brace now as it is painful for her when she doesn't wear it, so maybe you'll end up with the same feeling in the end with your child. Good luck! I'll get back to you and the body sock info. Kris

  6. #6
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    1)re vests; try www.gilbert-mellish.co.uk , haven't tried them, but looks good on their website. They are based in Birmingham

    2) I do wonder whether the slow increase in wearingtime is making life harder then it should be and one wonders whether just to break it in quickly and decisively would make it easier. Everytime she has had it on for a while, and she is just getting used to it (till some extend) you take it off and she can taste freedom again, garanteeing another struggle hours later.

    3) rewarding her for wearing the brace could be counterproductive in the longterm, as you might run out of "bribes", being very matter of fact, i.e., you wear underpants, socks, shoes and you wear a brace, that just the way it is might work better (longterm, not initially, because she is going to be so upset, and it is breaking your heart, but you are not to show that)

    4) In a way, you need to show that life goes on, and is still fun by doing lots of things she likes and which she will start enjoying again, even with a brace on

    5) making the bed softer by putting a doubled up continental quilt on top of the matrass can help the nights

    best wishes, and I know, it is so hard and heart breaking

    gerbo

    (daughter of 11 with IS, in brace)

  7. #7
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    "(longterm, not initially, because she is going to be so upset, and it is breaking your heart, but you are not to show that)"

    Sorry that brings back a memory of stuff Mum's told me. I was a wee, wee tot when I began to brace. She said the first twenty four hours I cried and so did she. Mum and Dad quickly decided, that this was going to be a long haul and that there would be lots of support, no sympathy. Just imagine this tiny person going "no I can't" (ie get my toys off the floor), but they would wait, say yes you can and I learnt that I could, and if I wanted them I'd have to (lol). Pretty soon I was the toddler tearing up the playground, hanging upside down on the monkey bars, oblivious to the passers by. You should of seen my brace, it was absolutely covered in really cool stickers; it was a way of personalising it.

    It would be a challenge to get a three year old to wear a brace, but you'll get there :-). I haven't been around a three year old in awhile but could you and Emma, make a 'brace' (it works out of plastic milk cartons, velcro strips and thumb tacks) for one of her dolls/teddies and make the association that dolly/teddy is wearing a brace, and that Teddy wants to see Emma wear her brace too.

    My thought would be to go to the night time part of thebracing as soon as possible, and either put it on her just before bedtime, or when she's asleep (that might wake her up which wouldn't be good, but I know some kids are 'dead to the world' when there asleep, or are so sleepy they go straight back to sleep :-p).

    I know body socks kind of things are supposed to be the most sensible, but well fitting undershirsts also work well. In the kid's section you can also get pretty looking ones and ones in different colours which I think look pretty cool and make you feel 'pretty' (could keep a good eye on the skin or alternate between body socks and undershirts)

    Alison

  8. #8
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    May 2005
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    Hi everybody,

    Thanks again for useful tips. I went straight to Gilbert & Mellish site and it does look promising. The order has to be made by healthcare Pro, but I'm seeing orthotics dept tomorrow, so I've printed out details and will see what they think.

    The tolerance build-up was initially suggested by a parent on this site, then the same advice was given by Emmas Occupational Therapist and Orthotics Tech. However tonight for the first time Emma has gone to bed in her brace. A few tears and one wake-up when she cried "I'm falling over" (couldn't sit up)....but hopefully it will go okay. That will be a big jump to a 12 hour stint.

    I think the "brace for teddy idea" is great and will definitely use that one.

    Emma was 2 years old before she could walk, and was unable to sit down or get up from the floor for a long time (required a lot of physio coaching). In the last 6 months she has come so far, conquering stairs, slopes, slides. It has been a joy to see her bouncing on beds and walking on walls. She still can't run or jump (a suspected neuro disorder - impairs muscles on right side of body and from pelvis down). That's why I'm concerned to see her moping on sofa when her brace is on....I hadn't realised (duh!) that it even makes it difficult to bend over, until I saw her staring miserably at a dropped toy that she couldn't retrieve. It's heartening to know that mobility should improve....but I can't work out how she can bend over to pick things up without overbalancing???

    I'm trying to avoid "over mummying", cos past experience has taught me that Em is adept at hiding her potential to do things for herself. When she started nursery the staff discovered she had trained 2 little "boyfriends" to handfeed her with her packed lunch! .

  9. #9
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    Jun 2005
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    I really like that brace for a doll idea! I think it will help instill some pride in Emma's brace, and I think it is important for her to be proud of it.
    How is Emma's squatting or getting up and down off of the floor ability? I find that this is often much easier than bending over, and is usually easier on for the little ones to accomplish. (ie, if there is a dropped toy, can she get down on her knees to pick it up and then stand back up with out using hands?)
    It sounds to me like you are doing an awesome job!
    Harrington Rods in 1991 at age 15
    Surgery at Scottish Rite in Dallas, TX

    Fused from T-4 to L-3

  10. #10
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    Even without the brace Emma finds it almost impossible to crouch/squat, and getting up or down to the floor is still a rather an awkward maneuvre, requiring use of hands. In terms of bending at the knees, one knee seems to work better than the other. She can now work herself into a kneeling position, but that seems a bit of a complex way of picking up toys etc.
    I'm going to ask her physio about any mobility strategies she might be able to teach her while wearing the "brace", cos I don't want her mobility to be too impeded by it after all the progress she has made.
    Good news..the night-time session went well, she managed a straight 12 hours without any problems!
    Last edited by emmasmum; 07-06-2005 at 02:50 AM. Reason: clarity

  11. #11
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    Emmasmum, my daughter had difficulty at the beginning with bending over with her brace. She avoided playing basketball with the neighbors until her dad and I confronted the situation and explained to the neighbors about her brace and lack of mobility. The next thing, they were tossing her the ball to avoid having her bend over to get it herself occasionally. She had been rolling on the ground to get the ball, then finding a way to stand up afterwards, so we had to tell everyone ourselves as she was very embarrassed. She was impressed when they were all very accepting of her medical situation! Soon after, I would notice her using her knees to bend or her feet or leaning sideways or something to naturally compensate for the brace. This came gradually, and I can't do the things she does with her body now to avoid bending at the waist! I do save her the bend occasionally, though, shen we drop something together, etc. I assume you have those plastic hooks to dangle toys with, although she may be past that stage. I used to use them when my kids were in high chairs, etc. Her toys may be to big to hand on to something for your daughter to pull with a plastic chain. Maybe the "boyfriends" at her daycare will be willing to pick things up for her!!! Good luck with all. I forgot to look up my daughter's body sock info. When she wakes up, I will try to find one of them and let you know. Enjoy toddlerhood! Kris

  12. #12
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    Emmasmum, I finally looked up Erica's body sock info. There is a net site for it www.knitrite.com. The body sock is made by Knit-Rite. I ordered them through the lady who fitted her brace, who is also in charge of the Charlotte Scoliosis Society,which gets together one in a while to do things as kids who have scoliosis. I found the site on the net, too, in case that helps you to compare. I know there is another company who sells similar ones. I think one company has thicker material than the other. My daughter loves these, thankfully, so I never had to try the other company. I think I found the other company a year ago by searching on the net. Maybe I searched for "body sock". I forget, but somehow I found 2 companies who sell them. They mostly sell to medical facilities, so I'm not sure if you can order direct, or if they will refer you to a clinic close to you to order through. Glad Emma is doing better in her brace and enjoy her "relationship" with her boyfriends! Kris

  13. #13
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    UK
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    Hi everybody,

    Good news on undervests, I saw orthotist today and showed them all the info you guys have given me. They are ordering her four of them, they have also taken brace in to trim it and add some sort of padding around edges, so that should make it a bit comfier.
    It's been a relief to read all your comments re; braces and mobility. Thanks to everybody for your help and support!

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