This is why the United States of America is the greatest country in the history of the planet. Collectively we have advanced science and medicine more than any other society in history. Every nation on earth benefits from our generous sharing of advancements in the treatment of disease.

I live abroad and dream for the day my family returns to America. It is a pity that we so often, I included, criticize and complain, when we should be so proud of who we are.

I love my country.

Sounds like you're blond.

I was diagnosed with scoliosis as a child living in Europe. My treatment was physical therapy and they literally had me hanging off a rack, among other things. I grew up just fine although my spine is still slightly curved. I'm healthy and active and my "problem" is definitely not noticeable. I feel sorry for any child that is stuck in a brace for who knows how long and wonder if some if these specialists don't rush to conclusions. I bet the DNA tests will prove that a lot of the brace-wearing is unnecessary.

Surgery and bracing are used too much. There are two causes of the curvature--either it is misshapen vertebrae, or it is soft tissue constriction. All you need is an xray. The surgery can fix misshapen vertebrae, the brace is absolutely useless in these cases. If it is not the vertebrae, it is soft tissue restriction that alternates from one side to the other to compensate. To explain, the body naturally wants to right itself. If you have soft tissue restriction, either from posture or repetetive strain or whatever reason, it will "pull" your spine down on one side. Then, further up your spine, your muscles will contract on the opposite side to compensate for the lateral bend that is created by the tissue restriction, in order to attempt to level your torso and head. The answer, then, for the soft tissue restriction version of scoliosis is soft tissue therapy---massage or physical therapy specifically. A good massage therapist can focus the massage on the sections of the spine where the soft tissues are creating the curve, and gradually bring about a change in the structure.

Doctors will rarely ever tell you about this because they make a whole lot of money on surgery and braces, and now off of DNA testing. I am a massage therapist, and I have seen significant improvement in the 2 clients that I have had who were suffering from scoliosis that I could treat. Try it out, at the very worst you are out $50-60 or so per session, instead of thousands of dollars at the hospital.

I was dx'ed with scoliosis at age 13 here in the USA in the 1960s after my mom kept telling me to "stand up straight" as she tried to shorten my skirts and dresses and couldn't make both side "even." After myriad exams with orthopedists and having to stand just in my bra and panty in front of panels of male doctors (highly embarrassing), they decided that I "needed" a brace or surgery even though my curvature was only 10 degrees.

I'm so grateful that a different doctor, back in that "Stone Age" time, said NO BRACE and NO SURGERY. Physical therapy, keep doing those back/core exercises, and keep your weight in check .... you'll be fine. He saved me from that God-awful brace ... which, in those days was plaster and not removable. I, too, had a metal bar hanging at my bedroom door. That exercise was to hold on, hang/relax neck and spine, and then do leg lifts. Another was "the cat stretch" -- elbows and knees on the floor/ curve in and stretch/ arch up and stretch --- a great stress reliever that I do to today. One more was to lie on the floor on my stomach, a soup can in each hand, and extend forward/back.

My scoliosis history includes my paternal grandmother, my father, me, and my daughter.

I've been somewhat delinquent with my exercises, and I need to lose 10 lbs., but for the most part I'm pain free. An occasional OTC Advil helps when I have to stand in one position for too long.

This DNA test sounds great. I will pass this on to my daughter. She's maybe too old now, but she should know about this!

Good info, THS and NJP!

Just please don't forget about chiropractic care! Chiropractic also works mechanically on the vertebrae to allow proper movement and alignment of joints, thus helping the body to assume a more normal posture. In addition, because a large aspect of idiopathic scoliosis involves proprioceptive input (eg- the nerves that tell your brain where your bones are positioned), chiropractic care helps to stimulate those proprioceptors (nerves) which help your brain regulate the core muscle tonicity, thus helping to keep the spine straighter.

Keep in mind, chiropractic works best when the scoliosis is found early, at a young age before severe curves are formed, usually pre-adolescent. If not found early, then chiropractic may be very helpful in mitigating symptoms of scoliosis that occur from the mechanical stress produced.

Hope this helps!

Indy -- My first chiropractor, over 25 years ago, used to jiggle my heels and do weird taps on my back and tell me I was good to go even though I poured money into his coffers 5 days a week and was still in pain after 4 months.

I'm on my 4th one now, and she's excellent. My daughter goes to her, too. I'm no longer afraid of a good old "bone cracking" if I'm really out of alignment because I did something stupid. It's an immediate "Ahhhhh" ... and I've progressed well enough to go only once a month for maintenance.

I will email my chiropractor this article. My daughter may be too old for this test (early 20s) - curvature less than 12 degrees - but I want her to know everything that can help her throughout her life. A nagging scoliosis back pain can be as debilitating as a severe toothache or headache!

BlueMist...

I was also diagnosed with scoliosis and had to wear the Milwaulkee Brace you describe. You are absolutely correct...it is psychologically traumatic as the need for treatment falls during the rapid growth period during the teen years, when kids are already so self conscious. There were tears and battles with my parents, and they relented in allowing me to not wear the brace to school...but as soon as I got home from school I had to put it on and wear it through the night and on weekends. I isolated myself in the house for the year or two that I had to wear it, and completely avoided any after-school social interaction so that I would not be seen in the brace. I remember having many nightmares that the house would catch on fire and I would have to go out in public in the brace. The fact my curve did not advance to a stage where it caused a problem or need for surgery, even though I was not wearing it for the hours during the school day, leads me to believe I probably did not really need the brace. I was physically active and athletic before the diagnosis, and also after I was finished with treatment, and my scoliosis never had any impact on my activities, pregnancies, sports including skiing, etc., so I was lucky in all those respects. I did always follow the common sense things I personally could do, such as keeping my weight down, avoiding very heavy lifting or anything that could strain my back, staying active, using good body mechanics, and when possible avoiding doing things that I thought could potentially injure my spine, as I NEVER wanted to have a need for spine surgery. An injury a few years ago has caused me a lot of physical problems with my spine now, but there was nothing I could have done to prevent the injury. A few years ago, one of my four children also developed scoliosis, and he also hated the prescribed brace, and I tried to be very lenient with him about wearing it.

And so, the point of all this, first... I am SO VERY THANKFUL to those who have developed this DNA test to help at least some kids to be spared from enduring the discomfort and trauma of bracing, and also to those who do alternative therapy for these kids, like a couple commenters above. Secondly, I think orthopedic spine doctors who treat scoliosis should absolutely make counseling a part of treatment when bracing is done. I am sure some kids are very confident and can handle it much better, but for the shy, less confident or bullied kids, it can be absolute torture and a professional to talk to and monitor the child's emotional health during treatment would be a great service to these patients. I know it sounds like a minor thing to deal with in comparison to the tragedies that some kids have to deal with...and that is true, but honestly scoliosis bracing is very traumatic for some kids and their developing body image.

I forgot to add that my new chiropractor does massage therapy. It works!

Scoliosis runs in my mom's side of the family, so I started getting it in early adolescence. I wore a brace just like yours for a year or two when I was that age since the curve is at the base of the spine for me. Except I only had to wear it for half the time at most (while I slept mostly) that girl did which is odd because my curve was a little more than hers. I would keep mine on for sometimes days at a time and only take it off for showers or when I'm doing something that requires more mobility like rock climbing, since it didn't restrict me from day to day life.

And yeah, the brace is pretty much a corset so it took some getting used to, but after a couple weeks it wouldn't hurt unless if I ate too much since it pressed on my stomach a lot. And it's true the braces by themselves look funky. My parents and I called mine "the chicken" since when I wore it, it looked like the shape of a roasted chicken lol!

As for the other kids and socialness and whatever, most people wouldn't notice I had a brace until they touched it. And I never ran into stupid teenagers going "Ew! You got plastic on you!" or whatever it is stupid jerks might say. Morons like that wouldn't be worth anyone's time anyways. If I got any reaction from people it was curiosity.

My back is still curved, which it always will be, but the brace brought the curve down enough that the doctors thought it wouldn't get a lot worse like it did to my grandma. My still curvy spine hasn't made a difference in my life at all. I often forget it is a bit off where it attaches to my hip. Braces aren't necessarily the only or best answer though. My cousin had a curve that was twice as bad as mine but instead of continuing with a brace or going through surgery, he started taking yoga and it made a huge difference for him!

Bottom line is the brace could be a little inconvenient, but I never saw it as a big deal or something to cry over. Maybe I'm just abnormally calm about stuff, but I don't understand why so many people have emotional crises and were traumatized by a back brace. Seriously kids, lighten up. They may be in puberty but driving themselves crazy with back brace meltdowns can't be good for their health.

I had the same thing as a child. My curvature was only got up to 9% though. Had I gone 10% or above, I would have ended up in a brace. Instead, I had regular physical therapy and exercise. I have a S-curve in my spine, and it is still there, but it is minor (only a few degrees). My hips lean in one direction, my shoulders lean in the other.

Mine is also s shape. Just think, I'd be a couple inches taller than my 5'3 if it was straight.

Teresa -- same with me. I'm 5'2" and I'd be 2" taller if I didn't have scoliosis.

Question to those of you who wore the brace .... did it reduce your curvature degree permanently? I haven't read anyone say yes about that.

I would probably be about an inch taller without the scoliosis. But at 5'7", I can't really complain.

My only complaint about it is when I tried to wear overalls when I was younger, the straps wouldn't stay on my right shoulder. And I can't carry my purse on that shoulder or else it slides off eventually.

I am sorry for your loss.

Yes, very unfortunate to lose someone over a condition that took a toll on her body. It's best not to think about 'what if she still wore her brace' as it opens tragic wounds. Focus on the good she had in her life and the great memories you two shared. I am sure she misses you and her loved ones as well.

That is really so sad. It probably could have been prevented had they caught it on time. What so many don't realize is that a lot of us have pretty severe cases of scoliosis and no amount of chiropractic care is going to "cure" it. When your organs are compressed because of your curving spine they can't function. I had a spinal fusion when I was a teenager because I had limited lung capacity among other things. It's a serious disease for some of us. I am so sorry for your loss.

How do you fire a bad doctor, since most are in private practice?

They have to have a license to practice so therefore they would be effectively fired. But I doubt that would be easy.

As far as I'm concerned overtreatment should be treated as malpractice just as undertreatment currently is. Regardless of the costs, a patient undergoing painful, potentially harmful treatment uneccesarily is no minor issue.

I figure, half the doctors graduated in the bottom half of their class. If one of those clowns makes a mistake are you saying I shouldn't sue? Since you only get to spend 5-10 minutes talking to a dr, it's hard to tell right off the bat how good he or she is. Doctors don't police themselves--matter of fact, they probably protect each other. I have been the victim of medical stupidity a couple of times but have never sued. Should I have? Maybe. At least I had the option.

I disagree that harmed patients should just "eat it." It's no consolation to know that your doctor lost his license when the mistake has left you injured, paralyzed, deformed, scarred, in pain, or otherwise harmed. There is often expensive corrective procedures and/or lifelong therapy for those patients, which may be very difficult to afford. Lawsuits allow patient victims to afford their care. You're basically asking a few unfortunate patients to bare the full cost of medical mistakes so that you can have the cheapest care possible... selfish.

There's a reason doctors "practice" medicine. Everyone's body chemistry is unique and drugs affect as all in different ways. What works for you wont necessarily work for the next person. These DNA based tests allow for doctors to treat you for your unique needs.

Doctors should indeed be held liable for failing to administer standard treatment regimens or negligence on their part but quite honestly sometimes life isn't fair and that isn't your physicians fault.

I have two rods in my back as well, placed there when I was 14. My scoliosis was not idiopathic like in this article, mine was a rare congenital form of it (meaning I was born with it), born with a triangle-shaped vertebrae in my lower spine which caused the S-curve as I grew. When I hadn't begun walking by the age of 2, Mom took me to a doctor which is when they found the scoliosis. Exams and x-rays every 3 months from age 2 'til my 3 surgeries at ages 12 and 14. A failed and painful surgery at age 12, then the rods put in age 14. I was flat on my back in a body cast (worse than a brace) from under my armpits to just above both knees, for 6 months, basically bedridden at age 14. Had my Mom not forced me to take calcium supplements when I was bedridden, I would have had to wear a smaller body cast for 3 more months. Thanks to my Mom, the supplements made my spine heal at a much faster rate, so no more body cast. Just had to learn how to walk all over again.

I am now 50 years old and have lived a normal life ever since then, but it was a traumatic time and I am emotionally scarred for life. I wouldn't wish this on anyone. Its good that I had a supportive family.

My heart goes out to all scolisosis sufferers.

Do you have any issues from the surgery? I am 40 and have arthritis...the doctors tell me it's not from surgery that I would have it regardless. I suspect that's not the case but really....how would I know. I always wonder if others have a hard time with pain.

There must be some bad back braces out there. I didn't need a esael set up to read in my back brace. mine went from right under my armpits down to my hips I didn't have the under the chin thing. I think medical advances have also advance the back brace.

the type of Milwaukee brace depends upon your curvature. Mine did go all the way to my chin and around my head for kyphosis (front to back curve - think dowagers hump) and scoliosis. I believe that if you have lower scoliosis they can do a shorter brace. It is not so much due to medical advances. That (the advance) would be the DNA test.

True and as the Chiropractor said to me "How long does your body keep growing?" Till into your 20's and that is how long you'd probably have to wear it and still then there was no guarantee it would have fixed the curve.

He did in 1 month what they couldn't do in 3 yrs of therapy and me wearing the brace for 23 hrs a day. I had specialists and they gave up and wanted to operate because they didn't know what else to do.

I agree. It's a good thing she had health insurance!

As for the daughter fighting with her mother over being made to do something to prevent a crippling condition, all I can say is shame on her for her miserable conduct while her mom tried to help her. She should take a lesson from other young patients with health problems who are brave and strong, and she should thank her mom for caring so much, instead of making a difficult life even more trying by fighting with her mom who only wants to make things better.

I sincerely hope you never have children, and if you do, I hope someone else is looking out for their well-being.

These things are painful and extremely uncomfortable. I highly doubt this child was arguing for fashion's sake - in fact, the article seems to indicate quite the opposite.

Because when you were a teenager/kid you went along with everything your parents asked of you, knowing it was for your better? You never suffered cruelty at the hands of other children, and you were the angel you expect every other child to be?
Kids don't argue because they think that they are going to win. The don't know how to express their emotions quite as well as a mature adult. And the only recourse they have is to cry a river in hopes of getting some sympathy.
Have a heart for the poor girl. She was locked in a prison for 23 hours a day...

You clearly dont have children... because seriously?? A little girl becoming a woman, and needing to wear a big brace all the time?? No wonder she had to argue.. i doubt this had to to with fashion.. it had all to do with being a teenager.. god.. some people are so anal retentive.

Have you tried being in a brace for 23 hours a day and attend school where the kids are cruel and try to live a normal life? Until you were to walk in her shoes, I wouldn't be so judgemental.

I am shocked and sickened by Eileen's post. I had to wear a Boston Brace for 3 1/2 years as a teenager, and it was an awful experience. I suggest that Eileen should try living in a brace for years and then she should let us know what she thinks . . .

Obviously you're not the parent of a 12 year old girl. I pray you are not a parent and never become one.

I wore a Boston brace for 4 years before my doctors and parents finally agreed that surgery was the best option for me. I had a 45 degree lower curve and a 38 degree upper. If you've never worn the brace, you can't even begin to imagine what it's like. It truly is awful, especially at that age.

I started to wear a brace in 6th grade. Hiding it is impossible, even wearing baggy clothes and high collared shirts. Your teens are awkward enough without dragging around an extra load of foam padding, plastic and steel. Think about how you would feel if everywhere you went, people asked what was wrong with you. Forget about a "normal" teen life. Sports were not an option either, since the requirements of the brace were that it had to be worn for 23 of 23 hours. It's like wearing a body cast from your hips to your chin. It changes every single aspect of your physical movements. It's not easy, and I can relate to the girl being tearful and upset with her parents. At that age, you still think they can fix almost anything. And at the least, she had to be able to take her frustrations out somewhere. Have some compassion, people! I am glad that this test was available and helped to keep her from having to go through more pain, both physical and emotional.

Eileen, how can you be so cruel!? So that girl is just supposed to keep quiet and be ok with a huge life change that will affect the way kids treat her?? Really??? Of course not! She is going to be upset, for vanity's sake and because it is uncomfortable. Newsflash, girls care about their appearance because of potential teasing at school. Of course she is going to act out and fight with her mom, she doesn't want to wear the thing! And she shouldn't want to! I hope you never have kids and if you do, I hope they never end up with this condition.

I don't wish being a parent to any 12 year old girl on anyone. That is about the age when I think aliens come down and abduct you sweet little girl and replace them with a tantrum throwing drama queen for the next 6 to 10 years. Maybe foil hats would help?

Seriously though that is great news for the girl and her family. I have had several friends that have been diagnosed with it. A friend of mine had a daughter diagnosed with it as well. I have seen first hand the cruelty shown to them and the hesitation of other people to play and interact with them for fear of hurting them Come to think of it it has only been girls that I have known that have it. I will have to do some reading on whether it affects females more then males.

The $2,500 cost of the test is covered by some insurance plans, but the company has been footing the bill for some, a spokeswoman said...

Eileen, did you read the whole article, or just skim to find parts you wanted to squawk about? Do you have any clue how expensive it is to perform a DNA test in the first place? Until you do a little research, don't start inferring that one has to be of a "privileged class" to afford "preferrential" treatment!

As a parent of a teenage child w/severe disabilities due to an auto-immune disease, I kind of had the same reaction as Eileen when reading this.

It is unfortunate that my child deals with this, but life will keep going even if he chose to feel like he was in prison or not. He has a lot more noticeable things happen to him than covering a back brace...I cannot say if more painful, pain is relative to the individual, though he has been in a wheelchair due to the inability to walk because of inflammation. He has suffered several bouts of bells palsy where the whole side of the face appears to have suffered a stroke. Was that hard to deal with at school? Well, according to him, not so much. He explained it to anyone even looking as if they were going to tease him or had that 'what in the world' look on their faces...and joked about it himself. If we cannot laugh at ourselves, we are in trouble. He has also done fundraising through his school for he arthritis foundation (his own idea)...raising awareness of what is up w/his own health and to help others who need the help and may simply be too shy or uncomfortable to talk about their story.

Has he played the 'poor me' teenage role at times? Sure thing. We call it a pity party...and it is timed to 10 minutes. After that, he meditates and mentally works through his frustration to get back on track. As his parent I do the same thing, it can be difficult to see your child fight a terrible disease, but it is crucial that he sees that his parents are strong, confident and happy, no matter the situation.

We do not allow him to wallow or even to go down the road of how bad it is for him...a lesson I learned from a delightful doctor. There is always someone who 'has it worse'...it is all relative, and wasteful to expend energy that way. THIS is the life you have, no matter the hardships, it is your life to live positively or not. That is how we have raised all of our children, and it is particularly a benefit to my auto-immune child.

I simply wanted to throw this out there as it seems Eileen was berated for her thoughts of how this was approached and some commented that I hope she isn't a parent. I am a parent and know full well what it means to be ill (I have the same condition as my son, though neither of us knew until after I had children) and to have an ill child.

My other thought was about the brace. I know nothing of these braces, but I would hope that the parents would have found out if it was possible to donate it to someone who truly does need it, not simply throwing it away.

Testing such as this is clearly a blessing and I hope others are able to benefit from it. It is a great day when medical science shows a development that will help w/out pharmaceuticals, etc!

All she needed was a chiropractor no stupid brace or surgery what a waste god I hate doctors they are all so stupid

Seriously Eileen (and those who agree with her), give the 12 year old a break, will ya? Seesh. Read some of the comments left by people who have ACTUALLY experienced a back brace and perhaps you will find at least a little bit of sympathy for this child.

eileen - can you be any more naive? You're delusional enough to actually believe that the "Brave Kids" never fought with their parents at any time? Get real. Every kid going through stuff like this has their bad days. Thes people are just honest enough to admit it.

I agree that the girl sounds like a brat, and the mother shouldn't have felt so guilty. She was doing the best she could, based on the medical advice she was given. When she found out about the test, she paid the $2,500 for her daughter to get it. Instead of beating herself up over not getting it sooner, she should expect a thank-you from her daughter.

Damn, give the girl a break! You have the nerve to post some sh-t about her being ungrateful and so on? Come on....she 16 for Christ's sake! It's normal.
You have any children, esp. teens?
I've got a 16 year old boy and I can tell you that if he had to wear a stinking brace, he'd raise bloody hell and I couldn't blame him!

Jez...there's always someone to spoil the pot on a perfectly cool and upbeat story....

JLM, on that guilt topic, I cannot tell you how many times people have told me they would 'feel so guilty' if they had a child w/a genetic illness...suggesting I should feel guilty for giving one to my child. My comments are always in the vain of I had no idea I even had it until after I had my child, regardless, guilt is a wasted emotion. If I spent my time feeling guilty, that would reflect in him as well and it wouldn't benefit any of us...it won't change the life we have.

I know not everyone can see life this way, but guilt and 'what if' is one of those emotions that I hope more people will be able to move beyond to focus on the good and positive of what life has to offer!

No One in Particular - it's kind of different for girls, wouldn't you say, at that age? They have a much harder time with body image, especially when they're beginning puberty.

Well, as a girl myself, I don't think it has to be different. I didn't know what was wrong w/me as a teen, I was just 'the sick kid', the one who kept getting all these strange health issues. I can say my grandparents blessed me w/a positive spirit and I never cared what others thought. Sure, I had my share of puberty acting out, but as far as self image, I think I was pretty lucky...I had a set of wonderful grandparents who set the foundation w/me very early on to love who I was and to accept my flaws as just 'me'.

Though, I certainly had enough girlfriends who fretted over this little detail and that one and worried of teasing and what not...and some of those girlfriends still today will say it is just 'easier' for me...nah, not at all, we all have our burdens, it is just about approach.

As a parent, I follow the advice provided by my grandparents...so far so good, hardwork and all. ;-)

Eileen - How dare you blame the kid? Seriously, how dare you? As a person with scoliosis who spent all of junior high, a time that I think everyone can agree we all hated, in a back brace, I am honestly offended that you would blame her. Why don't you try wearing something around your torso that sticks out of all your clothes - even with oversized sweatshirts, it's still really hard to cover. I used to DREAD going shopping with my mom, because, as much as she tried to be a good sport and say "Oh yeah, that looks good", she couldn't hide the look of "Oh god, you can still see it" every time I tried something on. You can't bend over. At all. When you DO figure out a way to bend down, it often sticks far out of your back, potentially resulting in your shirt getting stuck in the back. You can't eat too much either, as the brace will get too tight on your stomach - a running joke in my family became us going out to a restaurant and me saying "Oh I need to go loosen the brace". There's the heat - we all know how hot summer's get. Imagine doing that while wearing a plaster mold strapped completely to your body that no t-shirt or tank-top can cover. How about the pain? Why don't you try having something that physically PRESSES you into being straight 23 hours a day - trying to move away from the pads isn't just a small thing, I used to actually try and twist my ribs to get away from it. You have to wear an undershirt underneath the thing so that there aren't any rashes, so add that to the heat and embarrasment. Even with an undershirt, you still get rashes and marks. You're in that thing for 23 hours a day, and when you DO get out of it, any flexibility you had is pretty much gone - there went the dance classes I was getting so good at. Oh that 23 hours includes nights, so forget trying to find a comfortable way to sleep. As for the outside world? You try hugging someone with a plaster cast right around their middle. You try strapping your kid into a plaster cast that's essentially a corset. By the way, most braces go right under your breasts, so it's pressing into those when you're developing too. Oh, and anytime you grow and clothes FINALLY start to hide it? Yeah, you have to get a new one, and the cycle begins all over again.

Now, why don't you try all of that when you're a 13 YEAR OLD GIRL IN JUNIOR HIGH. We all know how cruel kids can be. How much crueler do you think they are to someone with this? I was lucky enough to have incredibly supportive and understanding parents, but I STILL hate thinking back to the time that I was forced to wear it. I also was a pretty good sport - luckily, I was oblivious to the cruelty around me as it was all behind my back. But even with my acceptance of it and the incredible family I had, there were many tears and I times I BEGGED to be let out of it.

I admit, kids have dealt with much, much worse than this. I know that, considering other disabilities and problems, I was very lucky that a brace was all I had. But to condemn her as a WHINER because she's not super happy about the fact that she has to wear this brace? How dare you.

As for concernedliberal - yes. A back brace IS a prison. Trust me. I know. I'm sorry that you dealt with all you have. But please don't belittle those who have to deal with this as a result.

I just wish this test was around when I was in junior high! Bravo to the medical profession!

With all due respect - Walk in her shoes before you judge. No maybe it's not as bad as say chemo but it's no picnic. I wore one of those braces faithfully for 4 years and still wound up needing surgery. ....my walk was hell and I fought with my mom a lot because when you are 12 and you are facing a scary and painful situation it's natural to get mad at a person when you don't really know how to get mad at the situation.

No One Particular says..."My other thought was about the brace. I know nothing of these braces, but I would hope that the parents would have found out if it was possible to donate it to someone who truly does need it, not simply throwing it away."

The brace is custom made for the child's body...and thus the continual adjustments for growth during the period of treatment. I am not sure how they are made now, but when mine was made in the seventies, the technician who makes the brace covers the child's hips from midtorso down to upper thigh with a wet plaster-wrap concoction (the child has a "body-stocking" on the torso that the plaster is put over) that hardens and then he uses that as forms to make the lower part of the brace that is apparently poured into the molds and hardens...it is a very humiliating thing for a child that age to go through, and that is just the part where the brace is made. It is VERY form fitting and uncomfortable with steel rods attached to other parts and straps...I use to sometimes put soft cotton padding underneath to pad areas that chaff or just plain hurt from the rubbing and pressure with every movement. Anyways, it is form fitting and custom made, and thus...it would be useless for reuse by another person.

I wanted to mention that I am sorry to hear about the health difficulties you and your son struggle with, and it sounds like maybe you and/or your son have benefitted from some type of counseling/professional emotional support through your illness...at least that is my thought by what you say, and/or maybe you have been educated in a related area, or something. Anyways, remember that most kids wearing bracing have not had the benefit of that...like you, many people probably do not see the trauma of the situation for a child that age, and the need for strong and/or professional emotional support to these kids. It can be hard for a parent to give the needed emotional support when they are often the target of the child's anger, as they are the one enforcing that the child has to wear the brace. It's a hard situation for everyone involved...just read some of these posts from middle aged people who still vividly remember the trauma they felt.

Also, although it is not good to wallow in self pity, it is also very healthy to vent and express anger, fears, pain, sadness at a situation, etc...to a trusted person who is OPEN to listening and supporting, and will not judge you or make you feel guilty for what your ARE feeling. When someone makes you feel like you are "bad" or not "OK" for feeling sad, angry, lonely, etc., the person will often stop talking about it, but that doesn't mean they don't still feel that...it just means they feel more isolated and alone in their feelings/pain. I hope you make sure your son has someone to talk to about all this when he wants to...without a ten minute time limit. You should offer yourself that kindness, as well.

Katherine...

Thank you for explaining it all so well.

Eileen you maam are a narrow minded sob. I wonder why this test is not mandated for every one diagnosed with this condition. $2500 is a whole lot less expensive than the old rack brace treatment and follow up.

Why price it at $2,500? A dumb question, but here are the Three reasons:

(1) It cost well over $100 million dollars to develop this test This money came from people who would like to recoup it. They did not do it for charity, but did hope they could help people. What a stupid question to ask. Do you think these things just appear out of thin air? People spend hundreds of millions of dollars and years of time to make this test work and they are bad people for trying to get paid for this. This money did not come from the government, in fact, the government made the cost of this significantly higher because of the hurdles they put up in the efforts for drug discovery. Private citizens ponied up this money, and they'd appreciate getting it back. Eileen - are you one of those people who watches some one else work for days to make a beautiful painting and then thinks it is unfair that you can't have it for free? I am guessing the answer is yes.

(2) It is a DNA test. It requires detailed and accurate testing at a remote lab. This also is not free. It is not like someone is handing you a bandaid for $2500.

(3) The test, as stated in the article, is not foolproof. It is not accurate 100% of the time. Unfortunately, while this is made clear to anyone who takes the test, morons like you still decide that if you are in the 1% of people where it was inaccurate, you should sue for millions of dollars (which you are not worth). As such, the amount of insurance coverage required by the provider of this test is incredibly high, which makes the test more expensive, and of course, over time has limited or prevented hundreds of amazing medical advances from being made available to people. This is your fault too Eileen.

If you would like fully socialized medicine you are welcome to it, but this test would never be developed in a society with socialized medicine, so please do not take this test, any cancer drugs, any heart drugs, or anything else that has improved the quality and length of life in the past 30 years. It would be unfair to the real world if you expected these things for free. They are not a god-given right, they are from the hard work and labor of people who spent dozens of years paying their way through top universities and dozens more learning everything they could about this subject matter in order to help people's lives.

eileen fails to see reality says... "If you would like fully socialized medicine you are welcome to it, but this test would never be developed in a society with socialized medicine."

Seriously...where do you get your facts? U.S. Medicare and Medicaid would fall under the definition of "socialized medicine"...why would another government sponsored healthcare insurance CHOICE (for those who do not have access to private insurance, or cannot afford it)... change our current genetic research status? You can still opt to carry your private insurance/healthcare system if that is your choice (as in capitalism, and competition), and has nothing to do with our tax funded GOVERNMENT sponsored scientific research...research that many other countries who have "socialized medicine" also perform, as shown from a few quotes below from the wikipedia article on the Human Genome Project...

The Human Genome Project (HGP) is an international scientific research project with a primary goal of determining the sequence of chemical base pairs which make up DNA and to identify and map the approximately 20,000–25,000 genes of the human genome from both a physical and functional standpoint.^[1]

The project began in 1990^[2] and was initially headed by [Ari Patrinos, head of the Office of Biological and Environmental Research. Francis Collins directed the National Institutes of Health National Human Genome Research Institute efforts]. A working draft of the genome was released in 2000 and a complete one in 2003, with further, more detailed analysis still being published. A parallel project was conducted outside of government by the Celera Corporation. Most of the government-sponsored sequencing was performed in universities and research centers from the United States, the United Kingdom, Japan, France, Germany,and China. The mapping of human genes is an important step in the development of medicines and other aspects of health care.

In 1976, the genome of the RNA virus Bacteriophage MS2 was the first complete genome to be determined, by Walter Fiers and his team at the University of Ghent (Ghent, Belgium).

Funding (for the Human Genome Project) came from the US government through the National Institutes of Health in the United States, and a UK charity organization, the Wellcome Trust, as well as numerous other groups from around the world. The funding supported a number of large sequencing centers including those at Whitehead Institute, the Sanger Centre, Washington University, and Baylor College of Medicine.

http://en.wikipedia.org/wiki/Human_Genome_Project

And as for your comment..."It would be unfair to the real world if you expected these things for free. They are not a god-given right, they are from the hard work and labor of people who spent dozens of years paying their way through top universities and dozens more learning everything they could about this subject matter in order to help people's lives"

sure...only the wealthy who can afford to pay the coiffer's of corporate insurance powers are entitled to scientific advancements that treat life threatening illnesses and debilitating conditions...isn't that what our U.S. Constitution says...something about the unalienable rights of LIFE, liberty and the pursuit of happiness for those who can afford to pay for it?

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Wow! You really believe that a 12 year old girl should be able to, how do we say "grin and bear it"? Shame on her for wanting to be like the other girls in her gym class! We live in a society where everyone is judged by their looks and how they are different from us. We're an instant gratification society perpetuated upon us by every form of media there is. I'd like to know the address of your utopia as it sure isn't in the good old US of A. This test is a boon for her and other sufferers as it determines the necessity of the brace and we should be thankful that it's available. This girl was freed from the prison of a brace that wasn't needed and that is wonderful news indeed!

Wow eileen your are just a poor sorry soul!! I would love to see you wear one of these braces yourself. you poor excuse for a person!!! you have no right!! no right at all to say what you did if you dont know anything about the pain they cause and how uncomfortable they are!! You must not have had a mother to fight with when you were 12 or may be you were a perfect child HAHA I think not!!! You and everone who agrees with you should put yourself in a brace 23hours a day for a year and then see what you think. It way to bad that this girl wants to be like the other girls and not have to wear a big bulking thing under her clothes... for shame on her. FOR SHAME ON YOU EILEEN. Get a life and a clue!!!!!

I'm sorry but to a kid that age, it is like a prison. I'm surprised you didn't feel the same way. They found a small curve in my back as a 5th grader and thank God I didn't need treatment because I put up with enough at that age, without a brace on top of it. I'm glad her family can put this behind them.

It's only a prison if you let yourself believe it is. I wore one for 4 years all throughout high school and if I sat there every night telling myself that this was ruining my life, it probably would have been. I was happy for the 2 hours a day I was allowed to take it off and go swimming and considered myself lucky when I witnessed other friends lose family members to cancer and car accidents. People are too affected by these things now a days.

Sit your kid in front of the 6 o'clock news any given night and let them know that they're fortunate enough to even have a brace to correct the scoliosis. It's certainly much more damaging to people who go a lifetime without treatment.

Eileen, I don't understand the point of your post. Is it your contention that the girl is some kind of silver spoon because her parents had medical insurance.? I don't know if you are aware of this, but a lot of parents with means have insurance for their kids. It sounds like you have an ax to grind against children. I assume that at one time you were a kid your self, so what's the beef? Being in a stifling situation like that would wear anyone down, weather they be a child or adult. Can you imagine how Stephen Hawking must feel in his confinement? Not everybody can suck it up as you obviously have been programmed to do, so show a little empathy.

Sophie, I tip my hat to you. This is the same way we approach my teenager who has a severe auto-immune disease. This is the life he has, he can choose to find the joy and be delighted in life, or he could choose another path. He does have a pity party every now and again, we time it (a lesson learned from a doctor)...get it all out, then get back to LIVING fullly!

Thank you for your great post of your own story!

To anyone living a life half full, I recommend either of Michael J Fox's books...a man who truly has walked the walk and is living a fabulous life, despite his body trying to tell him otherwise!

Open Minded, I don't think any of these folks are suggesting just 'sucking it up', but to see the good in life as a means of saying "I can do this, I am worth it"...that is not sucking it up, that is the power of believing in yourself!

No One, you have a good point, but I felt that Eileen could have come across more like a Dutch Uncle (or Aunt), than a storm trooper. There is a limit to tough love, and getting abusive is a nudge in the wrong direction.

Open Minded, I can see what you mean. I suppose that can also be the challenge of the internet, the typed word isn't always what we would mean in terms of emotions...not that I know Eileen, just in general.

Since we are in the whole 'disabilty' realm w/our child, we know first hand it is a tough balance of being strong, compassionate, sympathetic, knowing when 'enough is enough', etc...it is certainly a live and learn process, ESPECIALLY with a teenager. =) The one thing I always know for certain, it is easy to go down the wallowing/why me pathm very slippery slope (we have seen it many times). The more people that can channel their energies towards the positive (however that is for them, mind over matter, faith, community, etc), the better their situations will be in the short and long term.

Sometimes the brace doesn't work, nor the surgery. I have the same issues as you and I had the surgery. My bottom two vertabra was not fused at the time of surgery and they have fallen out of line, one to the left and one to the right and both are sitting on the sciatic nerve. But at least I'm alive.

A friend of my dad's was diagnosed with scoliosis and treated, wore the milwaulkee brace, still needed spinal surgery which she had...and which paralyzed her from the waist down. This happened when I was just finishing wearing a brace in being treated for scoliosis...and I feared the idea of ever having spinal surgery after seeing what happened to her.

Chiro's go to school 5-7 yrs longer than an MD does. Because they have to know everything about the body and they don't just specialize in one area of the body.

In the U.S., chiropractos are required to have 2-4 years (depending on the state) of undergraduate education prior to being admitted to chiro college, then they have 4 yrs of chiro school and that's it. MD's usually have a lot more years of training (like 8 years) plus internships. Not knocking chiros, but they don't have the 5-7 yrs extra education that you are claiming.

Thank you for pointing that out. Chiro's may be referred to as "Dr" but it is really just a professional courtesy. Chiro programs in the US are typically three years, you take your boards and pass them and you're good to go. I'm not knocking chiro's either, but to say they have more training than actual MD's is completely untrue.

Andrea, the term doctor is reserved just for medical doctors. That's arrogant for them to feel that way. Anyone that has a P.H.D. is considered a doctor in that field.

Meant to say that doctor is NOT only reserved only ofr M.D.'s.

I never said the term was reserved just for MD's. What I meant was that just because chiro's have the title of "dr" doesn't mean that they are MD's. Look at the history of the term and you'll understand what I mean.

PJB True. But I should say Chiro's are DO's and not always also a MD. Mine was a DO, MD so he did have more experience than just a MD or specialist.

If you do look for a Chiro it is best if they are a DO, MD. But they typically do go to school longer than MD's despite what you quoted above.

Are you a DO? Have experience? I am a DO and can diagnosis and treat better than most MD's most of the time because we spend real time with the patients and learn about them and not just what is in a chart or test.

I tend to be able to point out things in Xrays and tests that most MD's miss.

I have to usually suggest to my own Dr what tests to do and diagnosed myself with HBP, Diabetes, and HC.

I diagnosed my Father with Parkingson's and Prostate Cancer without tests and the MD's and specialists missed for a year or more.

There is no scientific support for chiropracty. Some folks may get relief from chiropractic procedures, but the practice is not based on the Scientific Method ...every MD knows that. Choose your poison.

First of all, it's CHIROPRACTIC...not "chiropracty".......stop being insulting!

Second, chiropractic programs require at least 90 credit hours (3 years) of undergraduate collegiate education. Some schools require 120 credit hours (4 years) before entering chiro school. ALL chiropractic schools require undergraduate courses in chemistry, physics, biology, psychology, etc. etc.

Graduate school is a 10-semester program (just like MD's!), but the students typically go to school all-year round in 15-week TRImesters, so their graduate education is completed in about 3 1/2 years. The only difference is that MD's generally complete a POST-doctoral residency program, though this is not a mandate. Chiropractors spend the final trimesters of school working in an outpatient clinic in a major city, treating the general public, while still taking a full load of classes.

The only major difference between a chiropractic education, and a medical one, is that MD's take courses in pharmacology, while chiropractic students take courses in adjustive technique instead. The rest of the curriculum is virtually identical.

BTW, the term "doctor" refers to someone who has completed a doctoral degree. It makes no difference what the field is. An engineer or a teacher with a doctorate is still called "doctor" as well!

And 'Vigilant'- please stop disrespecting chiropractic with the outdated notion that it is unscientific. We have a wealth of research information that now solves the riddle behind why and how chiropractic works! But give the profession a break! Chiropractic receives less than 5% of the NIH annual budget for research grants. The process is slow because there isn't a huge amount of money being allocated to proper research, but we're getting there! Plus, MANY MD's now work closely with chiropractors to assist their patients with musculoskeletal conditions!

They have quacks on both sides. I have kyphoscholosis which goes both ways.

The Dr's told me the same thing with the surgery and living past 30. They were wrong. Luckily I did have one of the best Chiro's in the country and that month he worked on me daily for a whole month.

I agree if the spit test is proven then great save 1 child from the brace and it is worth it.

I was told that if i didn't have the harrington rods put in I would be in a wheelchair by the age of 18 and dead from complications by my early '20s. At the rate my spine was growing crooked, I believe them. A chiropractor would have done me no good, since it was a deformed triangular vertebrae which caused my scoliosis.

Chiropractors may help some, but they aren't the cure-all for scoliosis patients.

Of course there are exceptions. But you don't know that it wouldn't have helped if you didn't try. I never said Chiro's were the cure-all for scoliosis patients but in Social Services and Healthcare I have seen 90% diagnosed with have the harrington rods and/or fused spine not needed and corrected with Chiro even upto 50 degrees on several types.

I feel your pain, Mike! Mine was in the early '70's, with the full body cast. I was lucky not to have to wear the "jacket" as you describe it.

doesn't work that way. Each brace is made for the individual and it my case I had to have 4 made over the 6 years that I wore it

Thanks for the info kguyton...I had thought the same thing, I hoped if possible it could be donated. It is unfortunate it couldn't benefit another person, thank you for the education!

10 degrees is minor and everyone has some scoliosis curve. The military won't except you if it is above 8 degrees. The brace may have helped a bit but your probably would have still had the problems you have today.

At least the surgery today can be reversed after you quit growing and the rods removed. But only in severe cases would I recommend getting the surgery.

Scott G- My rods are permanently inserted in my spine - there is no removing them because they are partially embedded in it. That is from early scoliosis technology. If the rods today can be removed, who on earth would want to go through spinal surgery AGAIN to remove them?! I know I wouldn't, because any spinal surgery is major!

Smlfry I agree - I was just stating that today it can be reversed. I am just glad I am not one of the ones that would even have to think about that.

But as the Dr's said to me at the time they didn't know what else to do and I'd have to live with the pain, etc. They were wrong 110% but things are better theses days.

We all hope at least.

I feel for you and I'm so sorry you had to go through that!! I suffered teasing in school when I wore a body cast after my first surgery, when wearing it for the first three months during 7th grade. The teasing was humiliating and I do feel your pain! Sending you HUGS for what you had to go through! I wouldn't wish this on anyone, especially an impressionable teen!

I had to wear one of these 24 hours a day starting at age 13. I just wanted to die. I could not sit in a car--I had to lie on my side in the back seat. The thing was thick leather with a huge steel frame jutting out front and back and I still recall the feel of sweat running down my back on hot days. There was a constant choking sensation unless I was looking at the ceiling. I had to sit on a bench leaning forward at school and I did not fit in desks. Nobody would associate with me unless out of pity. I couldn't even put it on or take it off by myself--an adult had to cinch it up real tight and strap me in while I held on to a bedpost. It was hard to breathe, hard to sleep, and hard to keep my balance, so I was always falling down as I couldn't see where I was going. I couldn't get involved in any after school activities because of useless physical therapy twice a week (touch your toes! stretch your hamstrings!) and constant trips to this crummy brace shop miles away full of scary looking amputees. Add to that puberty (back in the days of belted pads) and braces with external headgear, and you can see why I fantasized about death.

After 2 years, they said I could take it off during school. Too late--I already was considered to have cooties by all the boys. After four years, the thing had changed my spinal curvature from 14 to 12. BFD!

LeahMarie, my teenager has some serious issues do to an auto-immune disease and has run the gamut from a cane, wheelchair, bells palsy in the face, nervous tics of the body, and more...he is not teased. I think it is all about approach and it sounds like you had just the right approach. If kids understand their curiosities and don't fear them, it seems they are less likely to take the path of negativity.

Kuddos to you for being pain free and for sharing your story! I hope it will help others with this disease!

I'm glad your teen isn't teased. That really sucks when kids do that. I was a really shy introverted teen and got unmercifully teased for even that. I swear, had the times been different (this was the late 70's early 80's) I might have been one of those Columbine kids.
Anyway, it was so hideous to me, once when my son was about 8 years old, I came up on him at the pool where he was standing near another kid and they were talking about a test they took at school. My son went on this unbelievable litany on how could this other kid possibly get any of the answers wrong, etc., and he had to be "a total retard" and so on.
That was the first and only time I whipped the sh-t out of my son.

Anthony, I am sorry to hear that. I know it can be much harder as an introverted child...bullies seem to thrive on the child who will not 'fight' back. My children are like my spouse and I, certainly not introverted and my child w/the health issues takes an extremely proactive approach to his issues. He discusses the visible issues w/those who seem 'interested' or even scared and has done some fundraising at his school for the arthritis foundation to raise awareness and hopefully help some kids who are truly to shy to discuss their health issues...my child certainly knows 'the stare' as he calls it...kids who don't understand and could go either way - asking about the issue or teasing. That in itself I believe has a lot to do w/the lack of bullying. It is sad that those who are the least able to defend themselves can be hurt the most. Hopefully those who have that internal strength can be the voice for those who do not, and help them to find their own voice. =)