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dizzydonna
10-16-2004, 09:35 PM
I posted this in another spot too. I hope that's ok, but I promised my daughter I'd do everything I could to get some answers.

My daughter is 11 and just started wearing a Boston Brace in August. She's had a great additude and worked her way up to 23/7. This week we saw her doc again and his report was that she still has an upper curve of 40 and the lower has gone from 32 to 13. (w/brace of course) He wants to get the upper to 21. HE cranked up her brace so tight she could hardly breathe and said "this is where I want it to be a month from now." (He's really a very nice guy, tho this doesn't sound like it.) If we can't get it there, he's talking about putting her in one of the "old timey" braces that goes all the way up around the neck!
Ever since then I've been trying to tighten it up (he suggested 4 marks and up it one mark each week) and she is now constantly complaining of itching and keeps wanting to get it off. I've tried lotions, alcohol, powder.... I'm at my wit's end. I feel like she's losing ground because she keeps taking it off. IS this typical? Is it because it's tighter and so it's kind of like starting over? Is it a mind game? I just don't know what to do for her. She's in tears sometimes because she's so itchy.
Any advise you have will be welcome.
Donna

Alison
10-17-2004, 08:18 AM
Hi Donna

That would be frustrating to your wits end, to be going forward for so long, and now starting to go backwards to square one :-(. Having never worn a Boston Brace (i've only ever seen pictures of it) I'm only therosing here, but it might give you some help. I'm sorry if its a bit rambly and all over the place:-)

--> Milwaukee braces are still prescribed in USA on occasions (but not much), they are considered more effective for high thorasic curves because it holds you from the neck. I think there's some pictures in one of the brace posts. Some kids do really well in them (back wise and psychologically), others not so well and have a very difficult time in them.

-->Could your daughters brace be too small tighter???, if it didn't start off where your doc wants it, and that where the othrotist checked it to make sure it was ok, could she have grown out of it already, cause you can grow quite rapidly at 11.

--> Braces are very much about mind games, it is almost as though it is a demon that you have to conquer. A brace at its full tightness is highly highly uncomfortable at first, and you wonder how you ever are going to breathe, and it takes awhile to get used to it.

--> Have you changed washing powder that you wash the undershirts in. Which is contributing to the itch. Or is the undershirt bunching up in places, or is she wearing a bra under her brace which could be adding to the pressing and uncomfortableness.

--> Could you work up the brace tightness in short spurts until she gets used to it, and maybe over a longer period then 4 weeks perhaps 6 weeks. Ie going for an hour at a time, then working your way up.

-->This is just me (but I'm strange) but saying in four weeks it must be at a certain tightness is almost an ultermatim, but I can also see where he is coming from.

-->It may be something that she just has to get used to gradually over time

-->From what I've read, braces without neck bit for upper curves are often not very effective on the upper curve (esp if its heaps near the neck) and that may also contribute to why there is no change in the upper curve.

-->I know its almost impossible, but you've got to try and keep your daughter's brace on as long as possible, and try and stop her taking it off, even if you feel like a mean Mommy :-(

-->Is the undershirt too small/too big

Whoops, this is a bit of a ramble

I hope you do find something that helps

:-)

Alison

ANIMAL LOVER12
10-17-2004, 11:54 AM
Hi Donna,

When I wore my Boston brace something similiar happened to me.I went to my orthotist who checked the x-rays that I had done(my othopaedic surgeon wasn't available that day and my orthotist knew how to measure curves in x-rays so she did)Syhe told me that my curves weren't at the correction that she and my othopaedic surgeon were hoping for. So she put in bigger pads.That night when I was had my brace on again and was lying in bed it was just terrible. The pads pushed in to me very hard and I was in a lot of pain. It was like starting all over again because I had just gotten used to the other pads. It was a lot more itchy and after wearing it wfor four months still in pain( I know I didn't wear it enough time each day and probably made myself have pain by not wanting to get used to it) I made a reallty dumb decision and stopped wearing the brace. I chose to have surgery because I convinced myself to think that after two years of wearing my brace the curve would still progress. At my next appointment my curves had progressed. Your daughter will get used to the brace if she tries. Even if it feels that it is hurting her or itching her try to keep it on. If she has to take it off I would say take it off fotr a half hour or so then put it back on. I wish you and your daughter luck with the brace:p

dizzydonna
10-18-2004, 02:55 PM
Allison,
You are an angel! Knowing you haven't worn a brace since you were 13, (and it sounds like that was awhile back maybe?) but are willing to come on here and answer all kinds of questions for folks just touches me.
Thanks for all the thots and ideas. I'll give them all a try and we'll keep working on it.
And many thanks to you and Animal Lover for telling me to "hang tough" and not give in.
I'll let you know how we come out.
Donna

lrmb
10-18-2004, 06:11 PM
Hi Donna,

Just a note, I was sorry to hear about your daughter and reactions to the brace, etc. I know it's incredibly difficult to watch somebody have to go through this. I remember my own mom saying, if only she could wear it instead of me she would... It's sometimes just so difficult to accept having to keep the thing on.

Anyway, I wore a Milwaukee brace in the UK in the 1980s, and I wanted to let you know the other half of my own story. Basically, I was not very good at wearing the brace, although the one year I wore it 23/24 hours each day it actually improved my curve. As an older teenager, I really did not think it was very important to wear the brace, and by the time I stopped growing my curve was at 40 degrees. Now, at age 28, my curve is progressing, and I'm pretty sure I will need the surgery at some point in the next decade.

I don't have bad regrets for not wearing my brace, as there was a lot going on in my life during this time, and I can clearly remember the reasons I didn't buckle down and wear it. But I guess what I'd say is, if there is any way you can convey to your daughter the real necessity of wearing it, and emphasize the good things in life, then maybe you can weather the storm until the point the brace becomes normal life and you're through the worst.

All the best.
~Laura

Alison
10-19-2004, 12:36 AM
Hi Donna

It's not actually that long ago in terms of years, but it does seem like another lifetime ago. I'm 18 now, and the day I finished with my brace was the 18th of Nov 1999 when I was 13, a week before my surgery. Having worn a brace for 9 years in total, it was a huge part of my life, and it was actually weird to get rid of it for the last time. And strangely, even though it seems a lifetime ago, it is all still very vivid in my mind as though it was yesterday :-)

Why do I come on here, may you ask??, you'd think I'd want to try and forget it.... Many of the things we learnt along the way was by chance or just simply stumbling along the way, working it out as we went along, making it "up" lots of the time, and as mum says, we just did the best that we knew how and the best that they could do.

Many of the things we learnt were strange and weird/wonderful. And I was never treated any diffrently from my sibilings which was great too. If any of the things I pass on are helpful and means that someone doesn't have to "stumble" or wonder how to do something, then I'm more greateful to pass it "on"

Also I can never realistically "move on" or "let go" of my scoli, cause it was such a humonguous part of my life (since i was 15 m,onths ofa age) and is a big part of who I am still today and how I've "turned out"

And a lot of stuff we learnt and what I know now, the docs or orthotists simply don't tell you, cause they haven't experienced what its really like for themselves. I also picked up a lot of stuff observing people in waiting rooms and how they were "dealing with it" (mainly adolescents, diagnosed at about 12 ish with mums who were ususally in shock)

Just a thought... something that may assist in encouraging your daughter to leave her brace on. It may work, cause she's homeschooled (if my memory serves me correct) and it means that you can be a bit more flexible. In the hour of "outta brace" time could you perhaps divide it up into two lots of half an hour stints. Ie have one in the middle of the day and then at night when she can shower etc. It may be harder to get her back into it at the lunchtime "stint" but it might also encourage her to leave it on, cause she knows she gets a break in the middle of the day. But you'd have to be tough and make sure that it didn't stretch into longer than half an hour :-). Something else I bargained with my mum for was that in the hour "non brace" time I fitted in "Fun stuff" which was swimming training and jazz dancing. The deal was I'd wear my brace to the place, get out of it there. Class was an hour (dancing was 45 mins). Put it back on straight afterwards. Then at the nightime I'd have a "lightening fast shower" that was 10 min max then i'd put the brace straight back on. Yep I went 10 mins over, but when I was older, mum figured 10 mins "over" a couple of times a week. Was ok cause it kept harmony and stopped my whinging. I whinged a lot when I was in the brace from 11 to 13 cause I'd had an experience of what it was like to be "brace free" and I had a hard time going back into it, cause I knew that time had basically "run out"

When I was younger, it was different, cause I didn't know any different and thought wearing a brace was the most normal thing in the world. Strange thing is, quite ironical actually, my earliest memory in life is scoli related. Getting my braces made, being covered in plster, getting to have ballloons on my feet to make my feet orthotics. Then getting to have strawberry milk and chips in the hospital canteen yummy he he he. And the guy who I have the greatest respect for, gordon, the guy who made my braces from when I was tiny and still makes my orthotics.

Something to make you smile. I was known in kindergarten and am remembered as today as the girl who had stickers all over her body. Mum told me I would lift up my dress at regular intervals (and would hang upside down on the jungle gym) and show everyone my "really cool body". Cause not many kids got to wear stickers all over their body.

Scary thing is, I found out yesterday that you can now get braces made in pink and green swirls, army print, and denim print in Australia, and I was so jealous, caus that would have been funky :-)

Hang in there, it will get better and easier. I know its hard to be a mean mommy, and it probaly seems an uphill battle at the moment but it really is for the good.

Alison

dizzydonna
10-19-2004, 07:20 PM
Allison,
You are a "thumbs-up gal!" I so enjoyed hearing your history and how you've come to where and who you are today. And it sure makes sense. Your notes just all sound so incredibly mature - so I assumed your were older. I know that over the years as I've known other gals who've worn braces it seems each of them seemed to grow in stature and confidence. There must be some kind of inner change that goes on with lots of folks as they go through this process. And it's a positive change for the most part I guess. I look forward to that for Brandi. She has a number of challenges and it would be easy to say "why this too?" But I like to think this is something God can use in her life to make her more confident.
You are a fine inspiration in that very vein! I get the impression you may have some other "issues" as well - since you talked about ongoing orthotics, your feet, etc.

dizzydonna
10-19-2004, 07:23 PM
Allison,
You are a "thumbs-up gal!" I so enjoyed hearing your history and how you've come to where and who you are today. And it sure makes sense. Your notes just all sound so incredibly mature - so I assumed your were older. I know that over the years as I've known other gals who've worn braces it seems each of them seemed to grow in stature and confidence. There must be some kind of inner change that goes on with lots of folks as they go through this process. And it's a positive change for the most part I guess. I look forward to that for Brandi. She has a number of challenges and it would be easy to say "why this too?" But I like to think this is something God can use in her life to make her more confident.
You are a fine inspiration in that very vein! I get the impression you may have some other "issues" as well - since you talked about ongoing orthotics, your feet, etc.
Oops! Something just got sent accidently and I wasn't finished, so it probably won't make any sense. Not even sure what it was!
I was saying I read your note to Brandi. She listens carefully to each response and I think it encourages her. You know, that feeling that you're not alone in this.
Would welcome hearing more about you and your experiences any time. Thanks again.
Donna

Alison
10-19-2004, 08:35 PM
Nup, suprisingly I don't actually have any other serious medical "issues" particularly, I got a couple of "extras" to most people's scoli but except for that I'm just the girl with the crooked back.

:My feet came from my scoli, that the crookedness in my back started a chain reaction, it put my hips out, it rolled my knees in, and basically "collapsed" the arches in my feet. So I've worn orthotics ever since I could wear shoes. Mum made it fun when I was little cause despite having to wear "sensible" shoes she gave me frilly white socks to wear.

:My asthma "symptoms" (they can't actually manage to diagnose it, but I average 1 attack every year or so) they think came from how the spine sits in relation to other stuff.

I think kids in braces grow up a lot, because they have to come to a form of acceptance about the obstacle that they have hit in their lives and they have to work out how to "deal" with it. They have to accept that they have to wear a brace that may look gross, make them feel sweaty and restrict the clothes they can wear. They also have to accept that often they won't like it at all. And they also have to work out how to maintain positve and happy and not sit in a corner and cry "poor me" And they have to manage people's reactions which are too often poor you that's horrible.

You also become more confident cause you become very original In coming up to "quick witty responses" to what's that funny thing under your shirt. As well as learning to ignore the "Stares" you so often get from curious people and very much often the teasing

I also personally very quickly learnt "hospital politics" and knew exactly how and what was going on in the hospital. Unfortunately I also understood that the reason things weren't able to be "afforded" by the hospital such as back braces but admin was being given pay rises or money simply "disappeared" then majically reappeared.

I also think a brace actually brings little extra "perks" other than curve correction of course, that most people don't quite think about. You end up with a fantastic hourglass figure that makes most people jealous or spend lots of money on weight loss achieving; you often set of metal detectors and you get to go clothes shopping for "brace clothes" and you often spend longer shopping for clothes and well..... I love shopping :-)

Alison

dizzydonna
10-20-2004, 07:25 AM
Hey, thanks for sharing. I love your attitude. And I think I like your Mum a lot - she sounds like a real gem. :) How many sibs do you have?
Have you ever thought about writing a book? I looked for some for Brandi. Only really found one (maybe 2) that looked like something she could understand. Got one called There's an S in My Back - don't remember the author and I don't have it in front of me. It's written by a gal kind of as a story, telling her whole experience, all the way thru surgery, w/ a few pictures, etc. - from a kid's perspective. We barely started reading it - I hope it's good. Looks like it will be. Seems like there could be a few more out there tho. A couple I looked at (over the web) seemed fairly negative. (Maybe it could help you recover some of your expenses too! :)) But you could probably help even a lot more kids that way. ...............
You must have done most of your doctoring at the hospital? We haven't had to do that. Have actually only been twice to the Dr. at at Orthopedic clinic - more often to see the orthotist (did I spell that right? Doesn't look right), except for the initial visit to our family doc who diagnosed her.
So what do you do now? Are you in school still? And do you have any trouble with your back? Are you pain free? Glad you had the surgery? Any regrets?
Happy shopping!
Donna

Alison
10-20-2004, 10:26 AM
We did all my Doctoring at the Hospital until after my surgery, then went to the Docs private rooms until then end of last year when I saw him for the last time. But the medical system is a lot different in Australia than what it is in America

:There is the Public Health System and then there is Private Health Cover Insurance but you do not have to have Private Health Insurance, its a person's own choice, but you don't need it to get medical treatment.

:Under the private health cover insurance, you get more of your outlay back in claims that you make, and have less out of pocket expenses and get to choose your doctor and stuff like that.

:In the Public System, you are not charged for stuff such as Outpatient clinics and all the stuff that comes with it in the hospitals. But you don't get a choice about what doctor, obstetrician, surgeon you are seen by etc. And if you need surgery you go on a Waiting list which is often long, but if your a "high priority you are bumped up the list". If you are seeing your GP and some other auxillary health stuff you have to pay, but you get money back, but are left with a gap. You can be a private patinet, in a public hospital

Confused??, but it seems less confusing then the health system in America. The American health system seems so confronting, that if your insurance runs out then that's it.

When I was first diagnosed we were referred to the hospital, and got my surgeon by "luck" (and bloody good luck it was, he's extremley good, been doing it for a long time, and goes to America every year to learn the latest stuff). He can still remember the first time I went to him, cute and blonde hair, blue eyed and has a huge soft spot for me and I can remember when he didn't have an exploding pot belly he he . My parents continued with the public health system, because with the knowledge it would be such a long journey (spanned 17 years) it would be cheaper. It was also easier in many ways to get my brace made, orthotics made and x-rays done etc. My surgery was done as a private patient (no waiting list), one of the reasons was so I would not be "stapled" have a staple scar, which would have likely have been done in the public system, to save time and money in theatre costs, then I went to his private rooms after that, because it meant that I had a longer follow up care, in the public system they don't see you after 1 year post op.

I was talking to Mum about this, and she said all and up, my surgery would have cost 8000 dollars all up, but that was by choice and they got most of it back from the Health insurance people. My surgeon the lovely and ethical person that he is :-), chooses not to put his fee on top of all that. There was a fee for the surgery, but it wasn't the "surgeon's fee". There was a surgeon assisting him, but we didn't get his bill. My surgeon doesn't believe in putting his surgeons fee on top of other fees for children's surgery when they are a private patient. In the public system, all the fees etc are paid for by the public system

I'm in Year 12, second time around (sucker for punishment) and I want to do Prosthetics and Orthotics next year, second choicce Nursing. I couldn't find anything else that I wanted to do, and thought I'd be extremeley effective in the patient relations bit, cause when they say "you don't understand what its like" I can say, yes I do, but this is why you have to wear it. And I've learnt a lot about how the parent feels too from my many hours of observation, and think I would be effective in helping them with it too.

I only have one sister, but we always had lots of kids around our house so it seemed like I had billions. Next door neighbours kids, our friends, relatives etc. And they were all treated as part of extended family :-) and were allowed to rummage in our fridge, stay for dinner etc.

Except for a short time when I was 8 (my curves were at 23 degrees apiece), it was always in the backs of our minds that surgery one day was likely inevitable. As I got older, and the curves got so stiff and rotated, it was not really an "if" but "when". But we did everything possible throughout the years to try and reduce the curve and that's why I wore my last brace even though it was uneffective, just in case it workeed (well you never knew :-) It was done when it was because it was at a good time school wise (not miss out on much), the curves were increasing, I had stopped growing and my surgeon was getting older and retirement was looming. And I (and my parents) wanted him to do the surgery, and there's no way in a billion years that I would have let anyone else touch my back. If he had retired or died (he had a couple of heart attacks in the few years before my surgery) it would have take a lot of convincing and many years to trust anyone else, and quite honestly I couldn't have.

My back left some lasting oddysies but I have no major problems from it; it is still at the same degrees curved because it was a "holding fusion" only. I have a dodgy shoulder, because one of my ribs is siting under my collarbone due to my last back brace (which was trying to do the impossible). I still get achey every so often. I don't have any pain in my back, it "complains" due to overwork (maybe it needs a pay rise) every so often, but except for that it stays quiet as a good back should. I also use a ergonomic chair and writing board in exams, but that mainly to make sure I don't get wriggly and uncomfortable. Physio helped lots too :-)

Am I glad?, well I knew it had to be done and exactly why it had to be done. And it meant that the curves were stopped in their paths. And its fun to set off metal detectors :-) I don't let the rods stop my from doing anything, fav catchphrase "Yes I can do it (even if its on the "banned list"), just watch me". And I figure, if I break my back or my neck, at least I did it doing something fun, and I'll do anything at least once.

Any regrets....Well to be honest, I spent much of the time just before surgery and just after surgery very angry, bitter and depressed. It was because before I got my last brace, I got it six months after it was requested, and it was the last window of oppurtunity to try and stop the curves. I couldn't get my brace (along with 26 others, mainly wheelchair kids) because the hosptial admin couldn't find any money (froze basically the whole system) and wouldn't provide the rooms and equipt needed to make the braces, and when my dad went on radio to talk about it, he was told nothing was wrong (Which was a lie). It took a lot of "infighting" and my dad making a "back brace bed", my surgeon having a heart attack, and then... the money was miraculously "found". Unfortunatley I understood exactly what and why was going on and became very angry. Then I had to wear the brace (the complient child that i was) even though realistically it was doing nothing. And in all that I started high school......

After surgery, I was frustrated because my teacher ", mollycoddled me to death" despite my parents requests, and also many of the people in my year didn't understand why I couldn't do stuff and yelled at me for being a "weird freak who didn't talk to anyone". And I didn't like having restrictions put on me.

What did it take, may you ask, for me to refind my great attitude and accept who I was. A school change, psych help and basically time, and a good slap over the head from my best mate. And me working out me with a lot of thinking and private cries. I eventually realised, Stuff everyone (so to speak) I can do anything I put my mind to, and if I can't do it, work out a way around it. And that if people didn't accept me for who I was, then that was there problem. I became happy about who I was, scarily enough my intellect seems a lot older than most people my age, which makes it a challenge sometimes to relate to people my own age, but you get that :-).

So now... I do anything I want to do, and beat my own path through the world.

This book might be hard to find, probably on E-Bay or maybe Amazon, is another Scoliosis book I like. Its called ABBY'S TWIN and by Ann M. Martin, its a baby sitters club series book. Its about a 13 year old girl diagnosed with scoliosis and has to wear a brace. And how her twin, she and there mum deal with it. I like it, its not too difficult a read, and its realistic.

Wonder why some of the scoli stories/books floating around on the internet etc are so negative??

Despite the negatives that I experienced in my life, there are definetly a billion more postives and good experiences. Who knows, I might write a book one day, never came to mind, but never tried writing a book before, so might one day. It would be weird to not be "anonomyous" as you are on a forum. I would write it in fun language, with lots of pretty pictures, but it would also be honest and realistic. If I do get into prosthetics and orthotics next year, I would start writing a collection of easy to understand "patient info sheets" for people and parents who have recently found out they have scoliosis and need a brace. Cause I don't think the patient info sheets they hand out are very effective, honest and don't contain the stuff that you really need to know (and its too often the stuff you are too afraid to ask)

I'm sorry if I ramble on a bit. My fingers have a nasty habit of rambling once they get started. Maybe they need corrective training he he

Alison