On Dr. Hey's talk to kids getting braces: I assume that Dr. Hey is having an equally nuanced discussion when he recommends surgery to these kids. Something like:
"Although you're not having problems now, once your curve is "x" degrees you run the risk of having problems as an adult, including the chance of having surgery as an adult. Because of that, we recommend surgery on you now. Please understand that having surgery now is no guarantee that you won't have further problems as an adult. Down the road you may experience pain and you may require further surgery on your spine. But, for right now, we think we are making your odds as good as we can by giving you surgery now."
Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
On repeating the BrAIST study: The terms of conducting a randomized study on a treatment is that it is not clear that the treatment is effective. Once a treatment has been deemed effective, as it has, now, in the case of bracing, you have a difficult hurdle convincing an ethics and safety board that there's a good reason to deny a child the effective treatment. That means that there's every chance that they won't, ethically, be permitted to replicate this study.
May not need to repeat it If the long term on these kids does not comport with saving them from surgery.
Nobody braces to avoid surgery just until the point of maturity. That's crazy as a concept but it is a perfectly acceptable and tractable research hypothesis to study. Apples and oranges.
In research, there are sometimes things that at numbers and you can measure them but they don't mean a whole lot. This may be one such study if the long term does not match the point at which to 75% to 100% of growth is done.
Sharon, mother of identical twin girls with scoliosis
No island of sanity.
Question: What do you call alternative medicine that works?
Answer: Medicine
"We are all African."
I would be very circumspect in accusing my fellow parents of kids with scoliosis of lying. That's a pretty inflammatory thing to say about someone who is facing the same difficult situation we are all facing, and I've seen zero evidence that it is the case with either surgery or bracing. Bad things can happen to these kids, despite our best efforts. Parents guiding their kids through these choices have my complete support and understanding.
What can happen to parents, with all these treatments, is that they don't understand the long term picture. Clarifying that picture for all of these treatments rests on the surgeon. Surgeons need to be clear that a child with scoliosis is not dropped back into the normal risk pool regardless of what treatment is chosen. If they aren't making that clear, with surgery as with bracing, then they're not doing their job, IMO.
And no one has surgery as a teen just to be able to walk out of the hospital. And yet, both things are measured "successful" in these narrow windows.
An effective treatment, in these cases, is not a guarantee for life. These kids don't have that guarantee. It's just an attempt to give them the best odds possible.
Kudos to your son for taking such a mature approach. I truly commend him. I guess it depends on the age and the individual child - and I'm sure there are kids at both ends of the spectrum.
I think braces on one's teeth is quite different from a back brace by virtue of the fact that most teens can look around and find other kids with braces on their teeth. Often a child in a back brace is the only one in school, or in their class, in that situation.
We talk a lot about surgeons recommending surgery because it's what they do, it's their way to 'fix' things - so I commend those who want to offer alternatives (i.e., bracing). However, I still think that many teens unfortunately won't be able to get past wanting to fit in with their peers. They tend to live in the here and now, at least the ones I have encountered over the years.
mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/
Oh, yes, absolutely. I only mentioned it in response to your comment that kids even had problems with this more common treatment. For my son, he was the only kid in college with braces. I had mine when I was 30, and was, likewise, the only person in my group wearing them. Sometimes you weather through these things even though you know that you're not going to look terrific wearing them. But I totally get that braces on one's teeth are common and braces on one's back are not. And being different is just very hard on teens.
My point is only that responses to these things is just so individual. If an individual kid is having a big problem, then you absolutely choose your course based on their response. I just wouldn't tell teens that everyone has a problem. Some teens do fine, emotionally, in braces.
Last edited by hdugger; 01-13-2014 at 12:42 PM.
I also feel certain that surgeons have at least some sense of the difficulty of brace treatment. Even if they're not living with these kids, they have to know that some percentage of the kids stop wearing them.
Given that, I can only assume that surgeons prescribe braces because, no matter how tough they understand the treatment to be, they feel that kids are better off in braces then on the operating table.
Agreed, HD - some kids do amazingly well no matter what the challenge. I think it's fair to say these kids will do well in life because they can 'roll with the punches'.
And, yes, I know you get the difference between back braces and braces on one's teeth. I was just throwing that in there because I forgot to make that point in my original post, about how isolated a kid in a back brace might feel.
mariaf305@yahoo.com
Mom to David, age 17, braced June 2000 to March 2004
Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)
https://www.facebook.com/groups/ScoliosisTethering/
http://pediatricspinefoundation.org/