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dizzydonna
08-17-2004, 09:08 AM
Hello! This is my first time being on a forum, so am feeling a bit awkward. My almost-11 y.o. daughter started wearing a Boston Brace about 3 weeks ago and there are some daily living issues we're running into. I told her I'd check out this site and see what others say. I've searched the forums and haven't found my questions answered.
Our main issue is using the bathroom while wearing the brace. She needs to unbuckle all 3 straps in order to get her underpants down! Then I need to strap them back up. What will she do when I'm not with her? She's tried wearing the underpants over the brace but then then slide off when she bends over! Also, all the new jeans she just got no longer fit over the brace. Has anyone tried cutting tops, using elastic in waist or any such thing? She's found it's easier just not to wear a bra at all, because the pressure on seams irritates her - and just wears the special "body sock" the orthotics guy gave her. It's not a big deal right now, but what about when she's older?
Supposedly she's supposed to get to a point where she can put the brace on all by herself. Right now she can get it off by herself - and on, but not straight and buckled. I can't quite image this. All in all, she's got a wonderful attitude and we're gearing towards wearing it 23 hrs/day. (She's up to 7) I'm really proud of her.
Thanks for any advice you can give.

Mary Lou
08-17-2004, 03:36 PM
Donnalee...

First of all, please congratulate your daughter on doing such a wonderful job of wearing her brace! We all know it isn't the easiest thing to do.

As for her not wearing a bra...my daughter always wore a sports bra under her brace and she has had both a Milwaukee brace and a Boston brace. Jeans...we personally gave up on them. We ended up getting pants with a drawstring in the waistband. In order to get jeans which would fit over the brace, they ended up being to baggy in the backside or the legs to suit my daughter. As for shirts...we really didn't run into much of a problem there. She never wore her shirts real tight so most of them still fit over the brace. Underpants....sorry can't help you much there. We had the same problem and yes, I removed the brace many, many times for her to use the bathroom.

My daughter could also take herself out of the brace, but could never get it tight enough when putting it on herself. Heck, I had trouble getting it tight enough!

I hope this helps a little. Please know that we are all here to help in anyway possible and no question is to personal to ask!

Mary Lou

dizzydonna
08-17-2004, 04:02 PM
Thanks, Mary Lou. You sound like this is a thing of the past for you? I sure don't mind helping her, but I wonder about times when she's off with friends or something. Or even like times when we may have a sitter while we're gone. Some could probably handle the brace, but some may not. Guess we'll cross that bridge when we come to it.
Re the jeans, it's discouraging to have 3 new pair that she now can't wear. We just happened to buy a pair of shorts at GAP last month that has an adjustable inner waist (buttons with elastic). She was thrilled to see that those would work with or without her brace. I'd love to campaign clothing companies to make more like that!!

Alison
08-18-2004, 02:06 AM
Hi Donnalee

Your daughter seems to be doing very well, it is hard to adjust to a brace and all the things the Doctors don't quite ever tell you (such as how exactly am I supposed to tighten up this thing, and what kind of underwear wil fit over the brace and not slide off). I am coming from 18 years of experience with scoliosis (diagnosed 15 months of age, braced 9 years in total, fused at thirteen), this is what we found (and much was from stumbling along along the way) I hope some of it helps. The brace I wore is very similar to the Boston Brace on the left side of the link http://www.medrep-inc.com/boston__brace.htm (I went to find a picture of a Boston Brace as they are not made in Western Australia)

Doing up the brace just takes practice, it might be an idea to have your daughter "have a go" at doing it up in the morning before or just after breakfast (less food in your stomach it seems to be easier to do it up because your stomach isn't full), the hardest times to get the brace on are after swimming/spor:-). When I had a brace that did up at the back (when I was under 7 it did up at the back) and for the start of the front doing up brace when Mum did it up, Mum found it easier to do it up when I was lying down or laying on my side, it might be something worth trying. When I was older (braced from age 11 to age 13) and went on school camps and had babysitters (the ones I had reguarly) she showed them beforehand (and gave them some practice goes) on how to get the brace on and off if I couldn't do it. For changing for sport and stuff (when we did swimming, I wore the brace for PE otherwise) I either got the school nurse to help me or I had a couple of good friends who were good at helping my yank it on.

:If you experiment with different sizes and styles (there seems to be billions of styles these days) it should be possible to find a style/size of underwear that fits over the brace. I'm not meaning "granny undies", but perhaps a size bigger then normal . Also ones with a bit more elastic in the waist seem to stay up better over the brace and don't fall off the minute you. Even though it looks funny wearing them over the brace, it means that you have more freedom and don't need help to go to the toilet.

:Clothes are a challenge to find that still look good and fit over the brace. Jeans are possible, but it takes trial and error to find a pair that fits everywhere (over the brace, in the leg, them not falling off), drawstring pants work really good, as well the more "classy" pants (I don't know how to describe them, but they seem in fashion in Australia at the moment they aren't jeans and are kind of like cord style pants), jeans are hard to get altered because of how they are made, but with the more "classy" pants they are easy to alter (ie lengthen, shorten, bring the legs in , dart at the waist etc. I'm sorry can't help much with shirts, when I had the brace, it was at the stage where everyone was wearing normal t-shirts (not the fitted ones) and they of course fit over the brace. As for bras, I never did wear one under my brace (don't really know why, it just never came up), but I know people have found that sports bras, bralettes, bandeau styles and "normal bras" without seams seem to work pretty good (the ones with the standard hook and eye bit seemed to rub for most people but, some put felt where it clasped to alleviate this problem.

Hope some of this helps

Your daughter has a really good attitude towards wearing the brace which is often the biggest hurdle that people have to overcome, well done to your daughter (and you :-)

SandyC
08-18-2004, 11:34 AM
Donnalee,
Hi, while I'am long past 11 yo, having had revision surgery and having to wear a full body brace I found a few helpful ideas.

Once she goes to 23 hrs a day, it may be easier on her skin to just wear the body "sock" the ortho guy gave her. I found that the seams on even a sports bra can chafe, especially in the summer.

Try using one or two large safety pins to close and hold her jeans up. Cover with a tee shirt worn on the outside, instead of tucking in.

Even tho she may not like wearing her undies on the outside of her brace, it is easier. Try going up a size or two, that way her undies will stay up, and still be easy to remove.

Practice, practice and more practice on putting on and removing the brace
SandyC

dizzydonna
08-19-2004, 11:21 PM
Wow, you guys are awesome! I have tremendous respect for you and your personal experiences. Bless you for taking the time to give me some tips and pointers. I'll have to try the lying down idea - and the larger undies. It sure makes sense to me to wear them on the ouside, so as to be more independent. Also the full stomach vs. empty makes a lot of sense - tho we've been starting out in the a.m. anyhow, so as to be done with it earlier in the day (for awhile anyway).

I'm always so amazed at how adaptable kids are. The last couple of days she could hardly make it through the last half hour, and had to take a break from it mid day because she was so itchy and sweaty. But today she chuckled when she told me "Mom I got so busy playing today I forgot to take off my brace when the time was up - and wore it 45 minutes longer than I had to!

I think the next thing to tackle will be sleeping in it. She's been sleeping on the floor in our room (afraid of the night!!) and I've been trying to encourage her to think how nice her mattress will feel - especially when she's wearing her brace. We;ll see. That's a whole 'nother story (thread ? different site probably :)


Thanks again, ladies.

Alison
08-20-2004, 12:46 AM
As my Mum told me once many of the things we "learnt" were learnt by stumbling along, along our way and she did the best that she knew how. I'm more than happy to pass on what we learnt (the strangest never go out to Sizzler with me not wearing a backbrace for a special occasion after being in it fulltime cause I'll eat too much (first time in six years stomach expanded so I thought I could eat EVERYTHING) and chuck up everywhere he he he :-) cause I know it'll help someone else.

Your daughter is DOING EXTREMELEY WELL, it probably seems weird that she can adapt to a piece of plastic so well and so fast, my Mum also said once "if they can't do it they'll work out a way and when they come out of the brace they'll miss it" Here is a couple of other things that have come to mind

:To help with itchiness and sweating inside the brace it may be an idea in hot weather especially for the undershirt/body sock under the brace to be changed (probably at lunchtime would be a good time). It helps with feeling fresher not being stuck in this sweaty (wet and gross esp in AUstralian Summers trust me) singlet which when all sweaty feels gross and just simply uncomfortable

:When you do tackle sleeping for the first time, make sure you have lots of pillows (the little pillows that go on the couch or some normal bed pillows). She might find that the way she lays needs some pillows to make it comfortable (behind the back/between the legs). Also try it for the first time on a Friday or Saturday night when you don't have anything on the next day (so she can have a bit of a sleep in if its hard to get to sleep or if she wakes up). If she goes to bed a bit later than normal so is more "tired" she might find it a bit more easier to fall asleep (from the tiredness. Try and work on her moving back to her bed (it would probably be a bit more comfy and it would be easier to get into and out of the bed (it can be a bit hard sometimes to get down to the floor in the brace). If you have a lounge (Couch/settee) that is one of those long ones (not the seats) she could also try lying down in that for periods during the day in the brace to get used to lying in the brace in a sleeping position. It may take a little time for her to get up to wearing it all night. But encourage her to leave it on as long as possible (its hard to sleep when your sleeping patterns broken by getting up) even if for the first night she spends much of the night not quite sleeping deeply but more resting in bed.

Glad your daughter is adapting so well :-)

Alison

dizzydonna
08-24-2004, 01:59 PM
Well, haven't checked here in some days. We moved last spring and have traveled a bunch over the summer so are just now unpacking more boxes, etc. Have been setting up our "school room."
Yes, one advantage for my daughter is that we homeschool - so we can be a bit more adaptable for her needs. Our ortho guy suggested that when she gets up to 12 hrs/day we should then split the time between day and night (6 during the day/ 6 during the night). Does that seem reasonable to you? Or maybe I misunderstood - and it should just be however many hours she can handle at night (may be only 2!) and then balance it out in the day. I can't see that it would be wise to set a time and wake her in the night? Not sure how to handle that. We are to see him tomorrow, so I can ask again about that.
By the way, I bought some large size undies and they're working fine to wear on the outside - big help.
donna

Alison
08-25-2004, 06:44 AM
I wouldn't say I'd find it reasonable, i can understand his thinking behind it, too break it up, but I would forsee it being a little difficult in reality to carry out in practical terms. Even though doing it that way would break it up a bit I can see difficulties coming from it. Once sleeping patterns are broken (waking up during the night at the same time) it would be hard to get into a "normal" sleeping pattern and there would be potentially two very tired bodies in the house. It is often hard as well to get back to sleep once you have been awake, and taking a brace off you'd become pretty awake ;-).

And what you'd probably find is that once your daughter is able to "fall asleep" wearing the brace, that she will stay asleep for the whole night. My suggestion (and what the gut tells me) is to keep on working up the hours during the day until it gets up to "all day", and then tackle sleeping at night (which you may have to work up bit by bit, but really depends on what she can handle) and whilst working up to the "all day" have you daughter spend short bursts lying down to get used to lying down in the brace. Once you get up to the 15 hours mark (working on an average day ish) you'll find that the last 7 hours stretch is all "downhill" (getting close to the magic 23 hour goal, (sorry, weird humour that I possess and a bit of Olympics brain ;-)). Eventually what you'll both find is once she gets fully used to the brace she'll almost "forget" that its on (it does start to become a part of you)

Glad that the bigger undies worked

Sorry my post is a bit long winded, I think my brain thinks too fast for my hands sometimes ;-)

Alison

stormeygal
08-26-2004, 08:00 PM
I have found that bikini style under-ware is easier to wear with the brace. I got to the point where I could put my brace on myself after a while. I alway pull my underware down as soon as i put on the brace. I just have to yank kind of hard. Then i just pull them up but not over my brace.

about the bra........

At old navy they have these camisols that have built in bras and adjustible straps. They are in the adult sizes however, and me being really tiny, get the xs.

hope that helps

rebecca:D

saustin
10-08-2004, 04:35 PM
I wore a Boston Brace for 2 yrs, 23 hrs a day. Very hard to get into the habit of using it for that length of time. Definately buy bikini knickers though! Your daughter will be able to put the brace on by herself - you'll be amazed. Eventually the brace will be like a second skin, she may smell like surgical spirit but its only for a short time. I'm 35yrs now, although my spine is still 38 degrees, the brace helped - keep it up!

lrmb
10-08-2004, 07:30 PM
Hi there,

Just to add to the many posts here, I wanted to let you know Donnalee that when I was wearing my braces as a teenager (Milwaukee and Boston), I had two friends at school who used to help me with getting it on and off if it were ever needed. I know it seems like a really private thing, but teenage girls can really come up trumps on the important things when it concerns their friends. I only experienced total supportiveness from my circle of friends as regards having to wear the brace. Just writing this so that you might feel able to encourage your daughter to ask for help from her friends if she ever needs it.

Sounds like she is doing a FABULOUS job :)
All the best.
Laura

maliana17
10-09-2004, 01:04 AM
Hi
I wore the Boston Brace for 3.5 years. At first I had a difficult time getting the thing on and off because the plastic was not worked in yet. It was hard to get it around my waist and hips. I could not reach the straps to get it pulled tight enough, so at school I usually had someone go into the bathroom with me and after I was finished, I had them tighten the straps. With the bra thing, I had to wear a sports bra most of the time that I wore the brace because the buckle in the back of the bra was digging into my back and was uncomfortable. The best thing I found to wear under the brace were just plain white soft tank tops, long enough to tuck into my pants so that the inside of the brace would not rub on my skin. I tried to wear my underwear over my brace a couple times and it made me feel very uncomfortable. But after a little while, I was able to get the brace on and off very quickly without the help of my mom or friends. It gets easy, believe me. My Dr's always said to do the middle strap first, but I found that tightening the bottom strap helped me out the best when I started doing it myself. So she can try that out to see if that helps he. Just keep encouraging her to wear the brace, and if she is to do exercises, make sure she does them. I did not do my exercises regularly and now I regret it. The exercises, my dr. said could actually have stopped my spine from curving the amount that it did.

Molly

dizzydonna
10-09-2004, 10:08 AM
Hello and thanks to you all for your input. It has been so helpful. I'm happy to report that my daughter is now wearing her brace pretty much 23/7, with an occasional break and not complaining. IT helps that the weather is cooling. The toughest times are when she gets hot and sweaty, which causes itching. That nearly drives her to tears! But she's learning to just get out of it, wash up, put on some powder, get a fresh body sock.....
I'm also happy to say she's getting in and out of it by herself, and can very nearly get the straps as tight as they should be. I'm amazed!
Thanks again, all.
Donna

ChelleDancer2
12-28-2004, 08:00 PM
I just wanted to say, I think that it is practically impossible fo rme to get the brace on all by myself. The opening for my brace is in the back, whih makes things a little bit difficult. Does anybody have a brace that has an opening in anywhere other than the back?

~Michelle