Won't wear brace to school

[sashha]

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]

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]

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]

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]

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]

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]

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]

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]

wont wear brace for school

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]

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]

stapling

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]

stapling reply

Sorry my reply was to Aussie mom. I read alot on this site but don't reply to often.
Laura

[flowerpower]

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]

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]

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