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Aussiemum
08-13-2007, 10:18 PM
Hi Everyone,
Back again after a long abscence seeking all your expert advice.

Elysia has started refusing to wear her brace to school. She was allowed out of it for 4 hours per day but now takes it off at 8.00am and puts in back on after returning from school at 4.00pm. This means 8 hours out of the brace.

On x-ray in Feb she was at 38 Thoracic and our surgeon had advised that surgery was inevitable. So question is ..... do I push for total compliance? Is wearing the brace for 16 hours a day better than nothing? Would this be doing anything or is the damage being done by being out of the brace for the 8 hours?

We can't see the specialist until October but he had wanted to talk about surgery then anyway. There is no way we're going down that track if we can avoid it. She's just started High School and there is so many other drama's in the family at the moment with other problems I just find it's easier for me to give in than deal with the tantrums and dramas over her wearing the brace to school. Any advice welcome.

Thanks everyone.
Cheers
Del

The Slice
08-14-2007, 02:53 AM
It sounds as if you need to pull in the reins a bit with her. If she has gone out and gotten "plastered" as you say at 12, this is NOT acceptable. Regardless of the other issues going on in the house, what she needs now from you more than anything else is structure. Believe or not, as much as she says that she wants freedom, she wants, and needs boundaries. Right now, all she is thinking about is fitting in with the other kids, and in her mind, having to wear a brace doesn't work. She can only see the present right now. Her brain is not mature enough to see what the long term repercussions of not wearing the brace as prescribed. Now that doesn't guarantee that it will keep her from having surgery, somewhere along the line. Now, the general rule is that the smaller the curves at the time of surgery, the better the correction that can be achieved. If she wears the brace to school, yes, she's likely to get some reactions for a while, but eventually it will get "boring" and the kids will forget about it. There are many anecdotal stories from other kids who have gotten their braces, and not had anyone notice that they had one on unless they were told, or gave them a pat on the back or something like that. A couple even tell of the fun they have with the reactions from others when they pat them on the back, or make contact with them in some other way and find something real hard rather than the typical soft body. Talk to her and find out why she doesn't want to wear the brace to school, maybe it's something that can be easily solved. It may be something fairly simple like not wanting to change for gym in front of others, or something like that. It might be something that the school can help with by making accomodations for her needs. I'm willing to bet that more than anything, her not wearing the brace to school has to do with the fear of being different and maybe not fitting in. BTW, I looked for some of your other posts, and in one, you say that her curves are high and should be in a Milwaukee brace. As I understand it, the Milwaukee brace is usually used only in triple curves (one being a cervical curve). I think I read recently that they are theorizing that the upper curve is purely compensatory and will straighten itself out on its own as the other curves are corrected so that the TLSO brace will work. Hang in there and be firm if you need to be, and perhaps you can find ways to encourage her to be happier about wearing the brace, like looking further into clothing that she would like and that would do more to conceal the brace. Good luck and keep us updated.

RugbyLaura
08-14-2007, 03:48 AM
Hi Del,

Long time no "speak"! I'm sorry to hear about Elysia's reluctance to wear the brace at school but I really don't blame her. It's not only the visibility that's a problem; there's also the discomfort & restriction of movement. We got Immy fitted for both TLSO & Spinecor & then made a decision, based on a number of factors. Immy's curve is high too and the TLSO brace comes up so high that she has to walk like Herman Munster and looks like she's wearing 2 coat hangers. This she was told to wear for 23 hours a day. We look at it now & say "No chance" but if this were the only option I guess we'd go for it.

Anyway, back to your question, I don't have much knowledge on the subject but I understand that non-compliance is a BIG problem (really?!?!) the fact that it's seen as being a problem must mean that it has an effect. I suppose you need to get her to wear it, but I don't envy you. There, I've been completely unhelpful - sorry.

Just back to Spinecor for a minute. How is your friend's daughter getting on? You might find compliance less of a problem with Spinecor. I don't know how the health system works in Australia, but could you get a second opinion? We have occasional quibbles about wearing Spinecor from Imogen but all we have to do is point at the TLSO and she does as she's told.

Wishing you the best of luck,

Laura

tonibunny
08-14-2007, 06:28 AM
The Slice, forgive me if I'm wrong, but it sounds as though you have read "got plastered" in the UK slang sense, which means "to get drunk".....whereas I think Del means that her daughter got covered in plaster of paris when she was cast for her brace :D

Milwaukee braces are used (very rarely these days) for high thoracic curves - not just triple curves with a cervical element. I wore one myself as a child, and had a double curve with a thoracic curve that had a very high apex. I believe they work well, because I have a friend who has a similar high thoracic curve but was put into a TLSO and ended up with a much larger deformity; she wishes she had been put into a Milwaukee as she's been told it would have helped to prevent this. TLSOs simply don't come up high enough to have any effect on very high thoracic curves.

With triple curves, I can well believe that the cervical curve at the top is likely to be compensatory - but I don't think this would be true of a double curve, because my thoracic curve was the primary one.

I don't know if you have looked at Spinecor, but I would certainly check it out if I were you, to see if it would be suitable for Elysia. It looks way easier to wear than a TLSO and infinitely preferable to a Milwaukee.

Good luck! :)

Aussiemum
08-14-2007, 08:03 AM
Oh you made me have a good chuckle - The slice!!!
Yes tonibunny is correct - got plastered means covered in plaster!!!! But I can see how you might have thought different - I may need to change my Avitar!!!

Hi Laura, yes long time no type!!! The doc's appointment was away in October and I have had such other dramas to contend with I just wanted to wish away the Scoliosis problem away for awhile so forced myself off the net.
I'm having such issues with my girls schools. My eldest one I have managed to secure a spot in a new school for her final two years but for Elysia it's a hard decision. She had made such good progress up to the start of this Scoliosis issue which just happened to coincide with starting high school and now she's just slipping backwards. The school is a private anglican school but just can't control the kids - only a new school 5 years back when we started but the discipline or lack of is getting out of hand.
My dad has a terminal illness, my mother-in-law 86, is up and down with bad health and I'm in the middle torn between them all, trying to hold down a job and hang onto my sanity!!!! Ahhhhhh!!!

I did look into the spinecor brace but I think I mentioned that I felt it wouldn't help Elysia. Plus it's quite expensive and since her specialist felt the operation was inevitable at some stage I just had to weigh up everything. The operation is going to set us back $6,000. I feel like a dog chasing it's tail - I want to make the right decisions for Elysia - but feel like I'm going round in circles. But I think your all right - I have to work out some way of getting her to wear the brace to school - but she doesn't concentrate on her school work - just sits and mopes all day about having to wear the brace and while her back is getting the help it needs - her education is suffering.

Okay I think I've raved enough - now I'm going to go get plastered and it ain't going to be plaster kind!!!! LOL!

Love you guys!

Del

Snoopy
08-14-2007, 08:08 AM
Hi Del,

I understand what you are going through completely! My daughter was diagnosed also at 12. At the time of diagnosis, her cuve was 36*. She was prescribed a Milwaukee brace which she would not wear (can't say that I blame her). She was then prescribed a Boston brace which she wouldn't wear either. I finally gave up the fight of making her wear the brace. Jamie wasn't wearing her brace even eight hours a day. A year later, at the age of 13, Jamie had a spinal fusion. She had reached skeletal maturity and her curves continued to progress. At the time of surgery, her Scoliosis curve was 46* and still going.

Had she worn her brace, would it have helped slow the progression of her curve? Maybe. Maybe not. I don't dwell on that. If she is wearing the brace 16 hours a day, it has to be better than nothing. I don't have any answers for you, really. It is a decision you have to make yourself. I just wanted you to know I understand what you are going through. Good luck.

Mary Lou

RugbyLaura
08-14-2007, 08:40 AM
Del, Hope you're enjoying some of that excellent Aussie wine! Life sounds tough at the moment - I really hope it improves soon.

I wanted to add - following Mary Lou's post - that if Immy gets to 12 or 13 and 5'3" or so before surgery, we'll be over the moon. Her consultants view is that she's wearing Spinecor to put off surgery until she's grown. If, for Elysia, surgery is inevitable and she's nearly fully grown is there any point in inflicting "brace torture" on her? The other problem is the discipline thing & showing who's boss. Life's a minefield, huh?

If it were me......... I'd probably let her get away with it until October & then talk to the consultant............. But then discipline is not my strong point.

Hope the hangover is not too bad.

Laura x

The Slice
08-14-2007, 10:45 AM
Oops!!!!!!!! :D Yes I should have thought of that, just out of context. How embarrassing! My apologies to you AND your daughter. I stand corrected about the Milwaukee brace for high thoracic curves. There are stories here and at Spinekids that girls have actually preferred keeping the brace on because their back starts to hurt after taking the brace off. I know that it's extremely tough at this age for her and to have to be different but trust me, the initial excitement will pass, and the other kids will just go back to treating her like anyone else. In looking at one of your other threads (from the when she first got the brace) I'm curious as to how she is doing with wearing the brace when she does wear it. Is she getting it on okay. Is she tightening it up as she should? I know it's a pain both literally and figuratively, but but if she's not getting it as snug as it should be, that will affect how effective the brace will be. You mentioned in the other post about the brace sticking out at about a 20 degree angle? I'm guessing that you are talking about the top of the brace. If she is in compliance with the brace and it's still sticking out alot, either at the top or bottom, perhaps you can get the orthotist to do something about it. You may have to get tough. :eek: Unfortunately, you're probably going to have to use a little "tough love" on this issue for her own good, and you may have to get help from her school as well as she may "give in" and then take it off when she gets to school. :eek: Remember that at this age, even one day can seem like forever to her, and she'll have alot of "this is the worst day of my life" days, for alot more reasons than just the brace. Try to get her "on the same page" with you and understand the importance of wearing the brace and the effort to avoid surgery, or get the best possible result if she should need the surgery. You've got to keep her on track on this. As I said, she is only looking at "right now". A week is an eternity for her, so asking her to consider how wearing, or not wearing the brace now will affect her three, four, even five years from now is almost an impossibility. If you have not gotten her on the forum here, or Spinekids, then it would be a good idea to. If you are concerned about her safety, have her use the computer with limited privacy. If the computer is in a central location such as the living room as opposed to her own room. This will make it a little tougher for her to get into trouble. Talk to her about what is and not allowed so far as information given. For her to share her feelings and concerns with other kids and see that she's not alone in what she's dealing with may do alot more to get her to work with you in terms of wearing the brace. Give her an extra hug for me (anonymously). Give yourself one too.

emma12
08-14-2007, 11:30 AM
We never had good compliance with either of the braces (first Boston brace, 23 hrs/day then providence brace night time only). My daughter was first prescribed the boston brace at about 9 years old, (she is 12 now). She never wore it 23 hrs/day, but did wear it at night (most nights). After 1 1/2 years, she was given providence brace, and we had even less compliance with it (it was larger and more uncomfortable), but she only had to wear it at night. She is scheduled for surgery next week as her curves are now at 61T and 53L. When she wore the boston brace, her curves never were larger than around 30 degrees or so, so, I do believe that even wearing it only at night was doing something. The emotional trauma of wearing the brace is tough on kids, and, at the same time we moved to new school district...it was a constant battle. Looking back, I would focus on a much more vigorous exercising program in addition to wearing the brace as much as possible. I have also had 2 doctors tell me that 16 hours/day is really what they like to see--at least in my daughter's case (but they tell you 23 hrs/day because once kids think they can be out of the brace that they will spend more and more time out of it if they can). One other thought, a woman I have met in our area has a 14 year old who faithfully wore her brace 23 hrs/day for 4 years, was told she was done growing and didn't need brace anymore 6 months ago--now, the curve has continued to progress and they will probably need surgery after all of that anyway. It is a tough decision to make, and some kids absolutely will not wear it. Don't beat yourself up about it if it comes to that.

Aussiemum
08-14-2007, 08:14 PM
Thank you everyone for your input, what life savers you all are. None of my friends understand the dilema that myself and everyone else on here goes through.
I've discovered that Elysia's problem with wearing it to school is a boy issue. A boy that she likes wants to give her a hello hug in the mornings and this is what has caused most of the recent upheavels. (It seems to be the done thing at this school - that all friends hug each other hello).
I'm making some enquiries into trying to get her into a girls school - I think it will be easier for her to deal with it there. (She knows a few girls at this school alread).
And to answer the other questions - no, she isn't anywhere near done growing - she's only risser 0 - she's only at the start of the spurt which is why the specialist said the operation was inevitable. But.... I'm going to stick it out for as long as I can. I've mentioned on here before that there's no way she's having this operation under 50 degrees.

Thanks everyone!

Del

momw/scoli
08-14-2007, 11:03 PM
Dear Del,
I am at exactly the same place you are. My 12 year old wears a Boston brace and her Dr. told her to wear it 16 hours a day. She has a 36L and 38T curve.
She hates her brace. When school starts she will be at school from 6 to 4 because of athletics. Do I make her wear a brace to school? She already has dyslexia so school is very hard for her. Will wearing a brace make it physically and emotionally impossible? We are flying to Houston to see Dr. Marco about the spinecore but, I know our insurance company, United Healthcare, won't pay for it. They don't even want to pay for her Boston Brace. We are appealing, but they say our PPO choice plan won't pay. Should we go into debt paying for back braces, when she might need surgery? I am venting. I wish I had all the answers! I think I need to get plastered. HA HA! I'm from Texas. I also thought getting plastered meant getting drunk.
Becky

The Slice
08-15-2007, 06:37 AM
Del, how does this young man feel about hugging her with the brace on? If she is the only one having the problem with it, then try and help her understand how great it is that her friend is willing to give her the hugs with or without the brace. It's a way of saying that he has accepted her as a friend and is seeing beyond the brace. If this is the case, this boy's actions can go a long way toward helping her to accept the brace, and for others to see her not the brace. As long as this is not getting too serious (I doubt it) it's probably healthy for her. I would talk further with her and get her involved in any decision as to whether to change to an all girls school. She may prefer to stay where she is and make it work.

If she is only at a Risser 0, then it's even more important to get her compliant with the brace. I will re-iterate, there's absolutely no guarantee that wearing the brace will keep her from surgery, but not wearing the brace will almost guarantee that she will need the surgery. Furthermore, in theory, without the brace the curves could get bad enough that even with surgery she will still have problems with her back and other things as well. From what I've read from others, I'm intrigued that they are only having her in the brace 20 hrs a day being that she's at Risser 0 but I guess they feel that this is enough for her. I would not let her push her luck by only wearing it 16 hours a day.

Here's something else that may help. Have her read the thread called "changing for gym". This may really help her deal with others knowing about her brace. Please let us know what happens.

momw/scoli
08-15-2007, 08:50 AM
Slice,
Did you ever wear a back brace?

The Slice
08-15-2007, 11:17 AM
Momw/scoli, no I haven't. I have to try and imagine what it's like. I've read many, many stories and posts, and heard too many stories of kids (by kids) who later regretted not wearing their braces as they were supposed to. No I can't tell you what it's physically like to wear the brace, but I can tell you what it's like to not be like the other kids. I was born with multiple congenital defects including an ASD (a hole between the two atria), one working kidney, a narrowing in the ureter from that kidney to the bladder, to name some of them. I also found out well into my adulthood that I not only sufferer from ADD, but depression and anxiety, and have probably been dealing with that from early childhood. On top of all that for much of my childhood, I was very small for my size. At the age of almost 9, (when I finally started the various surgeries needed, I was about the size of a typical 5 y/o. It wasn't until my mid to late 30's that I really began to understand what role all of this had to play on my emotional and social development.

I will say that I am in awe of these kids and how resilient they are. Again I have to say that I have read so much from kids and there is a common theme in many of the stories. Most of them talk about the "horrors" of finding out that they had to wear a brace, and their fears as well as the trials and tribulations of trying to get used to the brace. Yes, there are those who never really get used to it and resent it 'til the day they don't have to wear it anymore. But there are so many more strories of kids who did adapt to wearing it and found that their concerns about how others would treat them were unfounded. What I see is something that, at least for those who don't end up needing surgery, that is very temporary. The hard part of it is that it's usually during one of the toughest times in childrens' lives - adolescence, where being "normal" and fitting in are paramount. I have read many stories of kids did a very good job of taking it all in stride and going on with their activities.

On another note, I was a respiratory therapist for 11 years and have some medical background, so I do understand more perhaps than many what can happen if kids either aren't compliant with treatment, or are diagnosed too late. Yes, the technology has improved tremendously over the years so that permanent disabilities are rare, but it doesn't alter the fact that the more compliant kids are with bracing the better the chances are of avoiding surgery(that is if their curves are caught early enough) and in most cases, if surgery is needed having a very positive effect on the amount of correction achieved. Del's daughter already has a fairly significant curve but is very early in her adolescent growth spurt so doing as much as possible to slow the progression of the curve can make a real difference. I do understand how tough it is for kids at this age and this is sometimes where a little "tough love" comes in. their brains aren't developed enough yet to really understand how this can affect their lives 4, 5, even 6 years later. All they can think about is "right now". As I said to Del, these kids at 12 and 13 will go through many episodes of "this is the worst day of my life" and will later in life be able to look back on it and laugh at how important those things seemed then.

Sorry this is so long.

The Slice
08-15-2007, 05:52 PM
.......One other thought, a woman I have met in our area has a 14 year old who faithfully wore her brace 23 hrs/day for 4 years, was told she was done growing and didn't need brace anymore 6 months ago--now, the curve has continued to progress and they will probably need surgery after all of that anyway. It is a tough decision to make, and some kids absolutely will not wear it. Don't beat yourself up about it if it comes to that.
Unfortunately this outcome is not surprising but maddening (sp?). Some consider that there is a safety margin when having a child in a brace where the brace continues to be worn for 1 to 2 years after the rapid skeletal growth has completed. If you look at the pattern of growth of the skeleton during puberty, doing this makes alot of sense. The growth spurt starts with the hands and feet followed by the long bones of the arms and legs and the last stage to finish up is the spine. If you watch your children during this time, you'll see what I mean. It's why kids during the growth spurt often look so long, lean, and skinny. The bones of their arms and legs are well into their rapid growth when the spine starts. What you see is what you get, they look long, skinny, and awkward because they are. Their arms and legs are out of proportion with the rest of their body.

sashha
08-15-2007, 06:19 PM
Hi Aussiemum,

Sorry to hear your situation. It has been 7 weeks since my 13-year-old daughter had surgery to correct her curves (56 thoracic, 45 lumbar). She is doing incredibly well.

I will offer my opinion on your situation, stressing that it is just an opinion. I did a TON of research on this topic and made the observation that the vast majority of kids who had scoliosis bad enough to warrant a brace, almost always ended up getting the surgery at some point regardless of having worn the brace.

In my opinion, if the surgery is inevitable, why put your kid through the torture of wearing a brace? That can be traumatic for an adolescent, especially a girl, not to mention uncomfortable, etc. The outcome is going to be the same even if she does not wear it.

So there you have one person's opinion. Ultimately, you must do what you believe is right.

Regards,
Sassha

Aussiemum
08-15-2007, 07:32 PM
The Slice - Thank you - your very informative and I hear you loud and clear on what your saying and agree with everything 100%. It is my fear that if she doesn't wear the brace as told that it will advance quickly and cause other problems as you say. But what if wearing the bracee causes other problems? Elysia already had all these social issues happening at school before the brace came along.

For a well adjusted child, happy at school, good peer support network, etc etc - having to wear a brace is one BIG issue for them to deal with. When you have a child who has other issues on her plate and then along comes another, there is a lot of weighing up to do.
Elysia has Irlene Syndrome which is visual dyslexia, she wears special coloured glasses for reading. She has no behaviour problems and seems to always make friends with the "brainiac kids" at school. Her four best friends excel at school. She started high school this year and spent the first 2 weeks crying because the "four friends" were all in the top class together and she was placed in the second bottom with all the kids with behaviour problems like ADD etc. Nobody wants to sit next to her or talk to her in class as she is seen as the "goody goody". She has to endure lunchtime detentions because the "class" misbehaved. (I have complained to the school about this) So all of these issues were happening and then along comes the brace. So you can see how it's hard for me to dish out the tough love when I know she has to face most of the school day (except lunch and recess) alone. Hence my idea of changing schools - scared though of the thought of exchanging one set of problems for maybe another - out of the frying pan into the fire so to speak.

Sasha - thank you for your input - hope your daughter is doing well!!!!!

Becky - Yes, I know someone wearing the Spinecor brace - daughter is only 19 degrees but she went through the operation with her older daughter and said she just couldn't bear to watch her 2nd daughter go through with it.
Elysia is also very sporty - never once missed out on making it through to the next level at school Athletics, this was her first year ever. Only 1st and 2nd place make it through, she could only pull off 3rd places and was devastated.
But I told her, lets see those other girls wear a brace all night and turn up the next morning and compete and achieve 3rd places, it's very tiring giving the positive re-enforcement all the time (not as tiring as wearing the brace I bet). At the end of Primary school last year (this is the last year before our kids enter 6 years of High school) Elysia received the Principals all rounder award. She also came in the top 20% of our State for Maths. This year from her half yearly report she has slid back to the bottom 20%, so obviously I'm concerned about applying the pressure of brace compliance.

Oh - I'm raving but this is all so therapeutic (sp?) it's like a "Dear Diary" only thing is you get your diary talking back.

Thanks peoples - I respect and take on board everything everyone is telling me.

xx
Del

tonibunny
08-15-2007, 08:33 PM
Sashha, you asked "In my opinion, if the surgery is inevitable, why put your kid through the torture of wearing a brace?"

Basically, bracing can prevent the curve from worsening, even if surgery is inevitable. The smaller the curve, the better correction that surgery will achieve for your child. They live with that fused curve for the rest of their life.

I can imagine that it's very difficult for teenagers to wear a brace, but having worn Milwaukees, plaster casts and TLSOs myself I would be happy to put my own kids into any of these if they had scoliosis. I don't see them as torturous - not even the Milwaukee - and the new Spinecor looks amazingly wearable :)

RugbyLaura
08-16-2007, 04:09 AM
Basically, bracing can prevent the curve from worsening, even if surgery is inevitable. The smaller the curve, the better correction that surgery will achieve for your child. They live with that fused curve for the rest of their life.

Toni - just to add that Imogen's consultant - Mr Cole - has stated that he is happy for her curve to grow to 70 degrees or more before operating as long as her spine remains flexible. As soon as the spine shows signs of becoming rigid he will operate. He says that he can get an excellent correction on a flexible spine, even when the curve is large. He believes that Spinecor enables the spine to remain flexible and that TLSO encourages just the opposite.



Laura

The Slice
08-16-2007, 12:21 PM
Del, Wow! I'm curious, although she is at a Risser 0, has she started "shooting up" (that is gaining height)? If so, this could have more to do with the drop in athletic performance. You see, when the arms and legs rapidly get longer, it throws off the center of balance, and affects coordination. The problem is that it takes the brain a bit longer to adjust to the changing body length. The other part of this is that the bones grow much faster than the muscles do so that there is not the same strength yet to support the longer limbs. This is also part of why kids have that "bean pole" appearance during the growth spurt. Part of the "filling out" that happens near the end, or even after the growth spurt is the muscles growing and catching up with the skeleton.

So far as school goes, that IS tough. Perhaps instead of "tough love" with your daughter, it's time to get tough with the school. If changing schools is an option, there are many issues to weigh. I would think that it would be good to get your daughter's input on this. Two questins come to mind immediately. How is this going to affect your daughter in terms of her friends? Will her switch to another school change her placement in classes? That is, is there any guarantee that she won't get place in what we call special ed classes in the new school. This could be even more devastating to her. I'm not sure how the school system works in Australia, but is this all girls school a private school that you will have to pay for? If so, is this option better, or could spending money on tutoring to help her with the learning difficulties and get her back into the mainstream at her present school be better. Remember that as you do get her involved in the decision, that many of her choices may be "emotion" driven. It will be your mission to help her sort all of that out. You're an awsome mom! Is there anything else that you can do to strengthen the friendships she does have in the school? Perhaps activies with these friends could strengthen their friendships and provide more emotional support for her. Here's another thing that may help. Can you get a copy of a book called "Please stop laughing at me" by Jodie Blanco? There are so many parallels between her story and your daughters. If possible, get this book and make it a must read for your daughter. if nothing else, it will help her see that she's not alone. Along with the medical problems, I had major self esteem issues, and issues with my father who I don't want to say abused me, but was very tough on me, tougher than my two siblings. (I think it was his way of trying to get me to compensate for the other deficiencies.) It was hard loving my father, knowing that he loves me, and at the same time being constantly afraid of him or of not getting things right for him. Don't get me wrong, I don't consider what he did as abuse, and he was never physically abusive. but he was intimidating. I wrestled with this enigma of loving him, and being afraid of him both for a long time (into my thirties). One day I heard a song by Holly Dunn called "Daddy's Hands". When I heard that song, I started crying HARD. The circumstances were probably much different than mine, but it was so meaningful to know that I wasn't the only person struggling with these contradictions. I really feel strongly about the help that book will be for her. If you can't get it there, perhaps there is some way I can get a copy to you, perhaps through a third party. Hang tough.

RugbyLaura
08-16-2007, 03:24 PM
The Slice put it just about perfectly:
So far as school goes, that IS tough. Perhaps instead of "tough love" with your daughter, it's time to get tough with the school. If changing schools is an option, there are many issues to weigh. I would think that it would be good to get your daughter's input on this. Two questins come to mind immediately. How is this going to affect your daughter in terms of her friends? Will her switch to another school change her placement in classes? That is, is there any guarantee that she won't get place in what we call special ed classes in the new school. This could be even more devastating to her. I'm not sure how the school system works in Australia, but is this all girls school a private school that you will have to pay for? If so, is this option better, or could spending money on tutoring to help her with the learning difficulties and get her back into the mainstream at her present school be better. Remember that as you do get her involved in the decision, that many of her choices may be "emotion" driven. It will be your mission to help her sort all of that out. You're an awsome mom!

Good luck Del,

Laura X

Aussiemum
08-16-2007, 08:02 PM
Thank you Slice for taking so much time to offer me your advice on this issue. I am including her in all our decisions. We have decided to make the application to the other school and just go for the interview and have a chat and then make the decision after that. Have tried ALL your suggestions previously. Have contacted the school and complained bitterly all year - they have helped in some areas, school councillor (sp?) is wonderful and Elysia chats with her every 2 weeks.

Elysia and her best friend have been horse riding together since they were 9 (at a mutual friends farm) - at 9 1/2 Elysia had a bad fall of a run away horse. (I think this is how the scolisosis started as it was discovered at this stage that her right scapula was sticking out awkwardly but no mention of scoliosis at that stage) anyway long story - won't bore you with all those details but 12 months ago best friends mum and dad brought best friend her own horse and pay $200 a week to adjist it at a riding school, well surprise surprise, best friend no longer available after school or weekends. Occassionally invites Elysia over to see horse but I can't afford horse or to adjist it.

I could go on forever in this story... have tried to get Elysia to branch out and make other friends which she does at school (but not from her class) they're all in the top class but there parents won't let them or can't be bothered driving them to socialise on weekends etc. (We all live quite far - well 15 - 20 minutes drive from each other).

Okay - just realised I'm raving on again......

Thank you heaps and a big cyber hug to you and Laura and everyone else.

xxx
Del

The Slice
08-17-2007, 05:52 AM
Del, Not to scare you off, but I wish I could be there in person to give you and your daughter a few big hugs, but I know I can't. The best thing I can do is offer you two "virtual" hugs.

HUG HUG HUG!!!!!

I'll keep you both in my thoughts. I hope that you will keep me/us up to date on what is happening.

wane
08-20-2007, 05:52 PM
Hi Aussiemum.
I wore a boston brace for 18 months now been put in a milwaukee brace just a few weeks ago. Everyone at school knew I wore a brace and pretty much accepted it. I was fitted with the milwaukee brace just after school finished for summer holidays so in September I face going back to school in a different brace which is pretty well very noticable because you cant hide the top of the brace. I was very upset about this but I got realy good advice from others on this forum and dont feel to bad about it now but still a bit unhappy as September gets nearer and school starts. My parents are so stict about my brace and I know I will have to comply. Now I have got used to it I have to wear it 23 hours a day with no exceptions except swimming. My parents told me the brace is now part of me and any excuses for not wearing it will not be tollerated. I dont like wearing it but I have to I think wearing a brace before the milwaukee made it easerer for me.
WANE

summer
08-21-2007, 07:54 AM
I WISH my parents would've forced me to wear my brace when I was younger! My curves would've been less and my surgery much shorter. Please try to make her wear it more often.

Brian's Mom
08-27-2007, 10:52 PM
I was reading your post and was wondering if you have ever looked into stapling surgery. The reason I say this is because my son (age 13) has also been non compliant with wearing his brace. We are going to Shriners Sept 24th and he is being stapled. His curve is a 26 but because he is only 11 the doctors feel he has a lot of growing to go.
Laura

Brian's Mom
08-27-2007, 10:53 PM
Sorry my reply was to Aussie mom. I read alot on this site but don't reply to often.
Laura

flowerpower
08-28-2007, 01:36 PM
Hi all,

Just wanted to add to all the comments I've read so far. I was braced in a Milwaukee for about 4-5 years starting when I was 12 so I totally understand what it is like for the kids. It was very traumatic for me, I remember the first day I had to wear brace to school I think I spent most of the day crying in the bathroom because everyone was staring and whispering about what might have happened to me. Back then no one, my mom, ortho dr. or anyone talked to me about it or gave advice on how to handle it. I eventually got used to and reluctantly accepted it and for the most part, everyone else did too. Of course there are always mean, nasty jerks like the girl who stopped me from entering the girls locker room because I was "handicapped". Once I got over the initial trauma though I didn't let it stop me from anything. I ran track, cross country and did other sports. I went to Knotts Berry Farm & Disneyland with brace on and went on the rides. I even had boyfriends.

So when my oldest son was diagnosed with scoli, I was in agony thinking of him going through the bracing. At initial consult with ortho surgeon, he said my son was borderline for bracing/surgery. (his thoracic curve was mid-upper 30's, can't remember lumbar right now). In looking through his records and past x-rays, the dr. said in his experience he felt my son fell within the 25% range of kids who will end up needing surgery despite bracing. In his opinion he felt bracing would be a waste of time, money and be emotionally traumatic BUT wrote out a prescription for a brace and let us decide for ourselves what course to take. After much agonizing consideration I had the same thought as Sasha, "why go through trauma of bracing if surgery is inevitable"? We didn't brace, my son had surgery at 14. It was for the most part successful except the rib hump wasn't corrected as much as we'd hoped. I know it was a bit of a surprise to the dr. and at his 1 yr. check-up last Dec. I asked about it. The dr. saidthe ribs may have malformed somewhat during the growth & rapid curve progression. This was something that was never brought up during consults about bracing and never crossed my mind (my main focus was the spine).

I am mentioning this to those considering whether to brace or not and those dealing with non-compliance because I've not seen it mentioned before and think it is something to ask & think about. Would bracing have helped the ribs form more normally and decrease the hump? I will never know now, I just hope it doesn't cause any problems in the future.

Something to consider, hope this helps in making more informed decisions.

Renee

mariaf
08-28-2007, 03:01 PM
Renee,

I'm no doctor - but from what I understand bracing doesn't do much to counter the rib hump - in fact I've heard that bracing can SOMETIMES contribute to rib deformities in certain cases - I just didn't want you to beat yourself up as we parents so often do.

Best of luck,

flowerpower
08-28-2007, 04:51 PM
Hi Maria,

Thanks for your input, I feel a little better. Its been years since I've been treated and I know there's progression, but my shoulder/rib hump is not as prominent as Joe's. So it has been a constant question in the back of my mind whether bracing would at least have helped that. Boy, sometimes it can feel like "damned if you do, damned if you don't :(

Good wishes to you,

Renee

amandap
08-28-2007, 05:46 PM
Hi Renee,

Maria is correct, bracing does not help the rib hump. In fact Lorena did not even have a rib hump prior to bracing; after wearing her brace for about a week or so it drove me absolutely crazy that she looked worst than before.

The rib hump is from the rotation of the spine not the curve.

I am surprised that it wasn't corrected during surgery.

Unfortunately one of the reasons bracing is not as successful is because kiddos don't comply 100% I understand it is difficult but so neccessary.

Like Laura mentioned earlier we opted for stapling.

Amanda

flowerpower
08-29-2007, 12:28 PM
Hi Amanda,

There is usually only about 50% correction on the rotation. In the 6 mo. span between scheduling and surgery the curves not only increased 11 deg. on thoracic/9 deg. lumbar but that is when the rotation & rib hump got really bad. Had we done the surgery in 7/05 when he was 49T/44L the rotation correction would have been better, but Joe was still Risser 0.

It was surprising to us and the dr. because right after surgery everything looked great, it was only after all the swelling went down and the body settled that the rib hump became apparent again.

I've not read or researched much on the stapling, do they need to be replaced as the child grows? Will this help to avoid spinal fusion altogether? I am interested because I will be taking my 9 y.o. to the ped. for a scoli check sometime soon.

Renee

amandap
08-29-2007, 04:45 PM
Hi Renee,

As long as your son is healthy a minor cosmetic rib hump is the least of your worries.

Stapling is essentially an internal brace that does offer the possibility of some correction (no guarantees) but if all goes well and the staples hold the curve it is very possible to avoid spinal fusion all together. This procedure is still considered "experimental" although the Doctors @ Shriners in Philly have been doing it for 6 almost 7 years. It's a great alternative (IMHO) to traditional hard braces that have to be worn for years on end.

No, the staples do not need to be replaced as the child grows. If there are no issues they just stay in.

There have been 2 children who have over corrrected and as of June 07 one of them had had the staples removed and they were waiting until just the perfect moment to remove the other childs staples.

My daughter was stapled when her curve was 42*, she was in a milwaukee brace for 6 months prior to surgery (the brace was working) she is now 1 year post op and her curve is down to 23*.

Does your 9 year old have scoliosis as well? How old was Joe when he was diagnosed? Did you have fusion also?

Amanda

Aussiemum
08-29-2007, 10:28 PM
Thanks for all the further imput everyone.
I haven't been on line for a while as we have all been down with a tummy bug and stress (the stress being me!)
They don't offer the stapling here in Australia - not many choices I'm afraid. I'm putting the whole thing in God's hands now and let him lead us down the right path.
I don't have the strength at the moment to force anyone to do anything and am just riding things out at the moment until our next appointment towards the end of September. So many things are falling apart at the moment and I'm putting bandaides on everything to try and hold the family together. Having a terrible time with a usually sweet 16 year old who is making my life hell on earth on the moment.
Elysia has been out of the brace for 4 days - I couldn't force it on her while she was down with the tummy bug and sick as ever! She's back at school today and back to her brace, although only the 16 hours but I'm happy with that until we see Dr next month.
Okay - I'm going to go visit the depression.com forum now - LOL!

Love to all - I will cheer up eventually!
Del

flowerpower
08-30-2007, 12:20 PM
Hi Amanda,

I've not had surgery although it was recommended at age 18 when it was obvious bracing failed. It has never bothered me until the last couple of years. I want and need to be checked, but hubby is self-employed, we pay our own medical insurance (which doesn't cover dental or vision) so financially it is difficult and I feel I have to put the kids needs above my own.

I discovered Joe's scoli a couple of months after he turned 10 (I think 1st x-ray showed 18T/11L). With my 9 y.o., it looks to me like he's developing scoli. When he bends over I can see asymetry in both the right thoracic & left lumbar. At Joe's 1 yr. post-op I had the ortho surgeon take a look at his back. He also noted slight unevenness and suggested follow-up with pediatrician within 6-9 mos. He just went through a growth spurt and it looks to me like the unevenness is increasing a bit more.

Renee

Xx..Sarah..xX
11-15-2007, 01:20 PM
hello,

I know exacly what your daughter is going through, and it must be frustrating as a mother. I used to wear a brace, and i hated it. It is so difficult to wear at school, other people dont really understand. It so hard when your young, and it was difficult beaucse i couldnt tuck in my shirt, which i was always called up about by teacher and i had to explain the whole situation. I didnt wear my brace properly, and ive just had the operation. First you have to find out the reason for not wanting to wear it to school. It most propbly due to other people seeing it or knowing about it. Explain to her thats its her own choice, but that like me if she dosnt wear it, she may end up with the surgery. Which isnt a nice thing to go through. And after that she will probly need to wear another brace for 6 months, whcih she will have to keep on all the time. Make sure that you tell her when shes older she probly wont know half the people shes a school with now, and if she dosnt wear it properly now then she may regret it. Its either wear the brace now, or have the operation and a brace after. Hope this helps x