How tight should a night time brace be?

[Pooka1]

I think I just seem that way because the discussions on this forum lean so far into the anti-bracing direction that I'm forever arguing the other side of the issue just to try to present an unslanted picture.

You are fighting the data, not me, in that endeavor.

[hdugger]

It remains rational to not brace given all the caveats.

It's not that it's not rational not to brace - there are all kinds of reasons why a doctor might not prescribe a brace and all kinds of reasons why a parent, even after being prescribed a brace - might not use it. I've no quarrel with that. It reduces the odds of surgery, but that's not the only thing that has to be considered. Doctors and patients might also decide, just as rationally, against surgery. None of this is chemo - the treatment isn't going to cure and the patient isn't going to die without treatment. (Even chemo, btw, is not chemo - lots of people thrive without it, and lots of people die with it)

My specific question to you was why you become emotionally involved in that decision when you are neither the doctor, parent, or patient? Yes, obviously if a kid is struggling, you want to let them know that they might not progress, even without a brace. I totally get that on a support forum. You try to support them wherever you find them. I think Gayle's posts have been completely on target - you don't want the kid to be in pain, you don't want to ignore how they feel. That's all invaluable advice from someone who's been through it from both sides (as a parent as as a patient)

But you're in full engagement in a case where the kid is doing fine, and you're engaging in a way that is far more advocacy then informative. You're calling people "caviler," you're acting as if people who disagree are ill-intentioned, you're repeatedly quoting information that isn't supported by the literature ("bracing only delays surgery") as fact, while treating a randomized study as if it's just some anecdotal report from an unknown source. You're not clarifying the picture - you're creating a picture which, from anything that I've ever read, does not exist. And you're doing it in a very emotionally-charged way.

I am just genuinely puzzled. Is there some reason why you doubt these (now two) doctors of being able to do their job? That is, do you genuinely feel that this specific child ought to be out of a brace right this minute, and that her doctors are putting together a bad treatment plan? Do you suspect that she's somehow suffering greatly, even though all evidence is to the contrary. If not, why are you emotionally involved in the decision?

[flerc]

If not, why are you emotionally involved in the decision?

If Pooka1 are really emotionally involved in a brace decision, then she must to see a doctor, but is absolutely unmoral what this Forum is allowing/promoting. It should to be shut down. How many parents around the world may be influenced reading her so much confusing claims against every non surgical option, believing she is a scientist as she is saying? MY GOD!!!

[mariaf]

How many parents around the world may be influenced reading her so much confusing claims against every non surgical option, believing she is a scientist as she is saying? MY GOD!!!

I just want to say that if parents are making medical decisions based on what ANY of us here of the forum say - be it you, me, Pooka or anyone else - they are doing a disservice to their children. This is simply a forum where we share ideas and experiences. Nobody should be using the views posted here on bracing, surgery, torso rotation machines, PT, or anything else as the tools by which they make their treatment decisions. They can read it and weigh it all - but they should be talking to their doctor and the medical experts in the field.

[Pooka1]

It's not that it's not rational not to brace -

Three negatives?

[...] why you become emotionally involved [...]

I find it ironic that you think it is I who am emotional when you completely flamed out and deleted dozens if not hundreds of your posts because you realized you couldn't stand by them. This was after you issued a public plea to the forum management for support and there was nothing but crickets chirping in response.

You used to contribute A LOT. Then you went around the bend because you are EMOTIONALLY opposed to me personally for personal reasons. None of this has a damn thing to do with medicine.

[Pooka1]

If Pooka1 are really emotionally involved in a brace decision, then she must to see a doctor, but is absolutely unmoral what this Forum is allowing/promoting. It should to be shut down. How many parents around the world may be influenced reading her so much confusing claims against every non surgical option, believing she is a scientist as she is saying? MY GOD!!!

All I can do is state I am LAY person and this is NOT MY FIELD. Now how many times have I written that? Give me your honest assessment. Just look slightly upthread for the most recent instance which was REALLY recent.

The only way forward is intellectual honesty.

[Pooka1]

"caviler,"

Are you repeating this so much because I made a typo (if I made a typo?)?

Are you seriously that childish? I think you are around the bend. You never would have done this before you flipped.

[Pooka1]

the most cavalier about it as we see in these posts.

Here is my usage of the word, "cavalier" and it is spelled correctly. I am confused about why you continue to spell it incorrectly and imply I did. Why do you continually put the misspelled word in quotes?

[hdugger]

. . .

I'm asking a genuine question - I'm not attributing motives to you, I'm not calling you names, I'm not fighting. I really am genuinely asking you a question. It feels like you have a huge amount of heat in this topic and I really can't figure out why. Who or what are you trying to save? From whom?

If you want to ascribe motives to me and call me names, that's certainly your prerogative, but it's nothing I'm interested in engaging in. Believe what you like and feel about me any way you like. If you want to talk about research or facts, I'll engage but for this stuff, you're really on your own.

I will make one small suggestion - isn't it possible that my spelling isn't all that good? I mean, again, think what you like, but I believe you've over-estimated my spelling skills as well as my plotting skills.

Maria, I quoted a study awhile ago where, if people read a scientific article and then read a comment with a personal invective, it colored what they thought the article said. That's why one of the science magazines closed their comments section - because emotional heat was actually changing the way that facts were perceived. Hence my sense that it makes it more difficult for people to consider information clearly.

[Pooka1]

Maria, I quoted a study awhile ago where, if people read a scientific article and then read a comment with a personal invective, it colored what they thought the article said. That's why one of the science magazines closed their comments section - because emotional heat was actually changing the way that facts were perceived. Hence my sense that it makes it more difficult for people to consider information clearly.

Not directed at you but abject ignorance probably changes the way facts are perceived more that emotional heat (which I deny on my part, by the way).

We all have identified our "dangers to society." You think it is me. I think it is folk science. Again not directed at you; I think you know folk science when you see it but fail 99% of the time to point it out because you don't perceive it as a problem. <shrug>

[Pooka1]

We all have identified our "dangers to society." You think it is me. I think it is folk science.

By this I am NOT claiming the research literature is folk science. I am claiming that skepticism is in order here as it is for the folk science that gets routinely posted on this forum.

I have repeatedly asked our friend flerc if he thinks BrAIST is a landmark study. By any estimate BrAIST is *IS* a landmark study. The reason he demurs is because I previously posted a link showing that only a small percentage of results from "landmark" studies are successfully reproduced. The same can be assumed for BrAIST though the other issues are probably enough at this point to remain skeptical.

If the results can't be reproduced, does it mean BrAIST is wrong or the second study is wrong? Who knows. They could both be wrong for different reasons. Or BrAIST could be correct (after addressing the caveats most especially the long term picture). This is a hard game. Half the battle is appreciating that fact.

[hdugger]

emotional heat (which I deny on my part, by the way).

You may well not feel hot, but you *read* very hot. Especially when bracing is raised as a topic. The topic shifts from whatever we were talking about to these very broad brush strokes where people who feel that bracing might work are somehow thrown in with those who might browbeat children while those who suspect that bracing doesn't work are the only ones advocating for the child's interest. And then it's just devils and angels all the way down.

Again, it makes it extremely distracting to just focus on the facts at hand. Can we just assume that no one is trying to harm, and that no one has an infallible grasp on the research?

BTW, maybe you've guessed or maybe you haven't, but I've no idea how to spell cavalier. I always start out spelling it cavilier and then the spell check calls that out, so I click on it and pick the first suggested spelling. Which, it turns out, is also wrong. I'm just a really lousy speller, much to the chagrin of my mom, the English teacher.

If I want to insult you, trust me, I'll just insult you.

Anyway, before I got distracted, this is what I was thinking about what your fear might be, in this case. And you're perfectly welcome to correct me - it just sort of jibed with the what I saw going on. So, is the issue that you think this particular kid has a false double major which will become a real double major over time if she braces? That is, that she'll make it to adulthood with a slightly sub-surgical curve, but then the lower curve will become structural as she ages and she'll eventually need a full fusion?

[hdugger]

folk science

Honey, you got to let it go with the folk science shtick (see, is that the right spelling I chose? Beats me!).

But, seriously, really, let it go. If you want to just blurt out every once in awhile that you think Dingo is a poo poo head, be my guest. But this sort of "people who post folk science (nod nod wink wink)" stuff is way too high school for my taste, and I didn't even *go* to high school.

I like Dingo and I find the stuff he posts interesting. If that strips me of my MPH (capitalization? Don't know, and I got the darn degree) in your eyes, so be it. I'm happy to be just folk.

[Pooka1]

I am trying to get people to think critically. I am trying to get them to think like scientists. In normal life this is not so critical. In a serious medical situation, it matters more. I am scared for people with little science background when faced with this.

Surgeons have a range of opinions on many things. That fact needs to be brought on board and fully embraced.

People want answers. The research literature is the best bet but it isn't so good, especially in this field where the research is hard to conduct.

But we have to avoid people going the other way to pseudoscience and google science.

It's a very dicey situation on this forum in my opinion.

[mariaf]

Maria, I quoted a study awhile ago where, if people read a scientific article and then read a comment with a personal invective, it colored what they thought the article said. That's why one of the science magazines closed their comments section - because emotional heat was actually changing the way that facts were perceived. Hence my sense that it makes it more difficult for people to consider information clearly.

Notwithstanding this study (and studies can say all different things, sometimes 2 studies will even conflict each other), speaking for myself and the dozens of parents I have dealt with over the years, I have found that the main source of decision making comes from talking to one's doctor, sometimes consulting with 2 or 3 experts in the field, and weighing what they say.

I was just trying to calm flerc's fear about parents using what we say on this forum to make decisions. Of course, we all read all sorts of things every day (articles, forums, etc.), but I give most people credit for being able to sort fact from opinion. And ironically, Pooka sticks to facts and science as much, if not more, than most.