How tight should a night time brace be?

[Pooka1]

I'm not trying to be *even* - it's not a blood vendetta. I'm trying to correct statements in your posts which are not supported by fact and to call out the ad hominems which are distracting from the discussion. I am pointing out that casting aspersions on researchers' as a way of discounting their research is not a clear-eyed reading of the research. It is, by definition, an ad hominem attack - "argumentum ad hominem, is a general category of fallacies in which a claim or argument is rejected on the basis of some irrelevant fact about the author of or the person presenting the claim or argument."

So, suggesting that Mooney would *lie* about how many kids in his study were in their growth spurts is way, way outside the bounds of a clear-eyed reading of research. It adds nothing, whatsoever, to the facts at hand - it doesn't clarify, inform, or otherwise.

Is there some reason why you cannot stick with just the research instead of making attacks against Mooney's character, my character, and the character of anyone who might have a different opinion?

The record is Mooney was not being straight on a number of issues, not the least of which is double publishing without saying he was double publishing. You are free to ignore reality and to not understand the gravity of this.

[Pooka1]

I'm trying to correct statements in your posts which are not supported by fact

Are you as sure I'm wrong as you are that my comments and McIntire's in re BrAISt are different?

[Pooka1]

Yes, tethering.

I meant one that has been around as long as torso rotation. There are probably no more than a dozen kids in the growth spurt among those 35 patients.

I would bet more than 12 kids have been tethered by now and they are all in the growth spurt and tethering is FAR newer than torso rotation.

[hdugger]

Then we are even

I'm not trying to be *even* - it's not a blood vendetta. I'm trying to correct statements in your posts which are not supported by fact and to call out the ad hominems which are distracting from the discussion. I am pointing out that casting aspersions on researchers' as a way of discounting their research is not a clear-eyed reading of the research. It is, by definition, an ad hominem attack - "argumentum ad hominem, is a general category of fallacies in which a claim or argument is rejected on the basis of some irrelevant fact about the author of or the person presenting the claim or argument."

So, suggesting that Mooney would *lie* about how many kids in his study were in their growth spurts is way, way outside the bounds of a clear-eyed reading of research. It adds nothing, whatsoever, to the facts at hand - it doesn't clarify, inform, or otherwise.

Is there some reason why you cannot stick with just the research instead of making attacks against Mooney's character, my character, and the character of anyone who might have a different opinion?

[Added correction - 12/29] Upon locating the Mooney paper in question, I discovered that the repeated reference to his dishonesty in double publishing is wholly unsupported by the facts. Mooney clearly states in his 2003 paper that he is using data from his earlier study, how many patients came from both studies, and that the table shows combined results. There is no question of an ethical violation of any kind. This renders moot the entire discussion about the ethics of this event, since it turns out that the said event never happened. I will add this correction to all of my posts concerning Mooney's research to reflect this better information

[hdugger]

What you can find and what is out there are two different things. As usual..

Well, I'll tell you what I did, because I was genuinely interested in finding out. I first thing I found was the most recent (July 2013) Blue Cross statement on scoliosis treatment and this was their summary on vertebral stapling:

"A search of the MEDLINE database in 2010 and updated in 2011 identified a total of five
publications on vertebral stapling; all from Betz et al. The most recent (2010 and 2011)
publication reported on 29 patients with juvenile or adolescent idiopathic scoliosis who met the
study inclusion criteria (out of a database of 93 patients). The reasons for excluding 69% of the
patients from the database were not specifically described but included a change in the type of
staple in 2002."
https://www.bcbsal.org/providers/policies/final/464.pdf

So that got me up to 2011, then I went to PubMed and searched on Betz's name and stapling and I came up with one more article, but it was exclusively about children under 10.

So, I stated what I'd found with the caveat that it was "what I could find" so that Maria or Gayle could update me with anything more recent. And here we are.

I'll add, again, that the "As usual" is sort of unpleasantly zingy. If you have better data, just post it. There's no need to insult me - just post something newer/more comprehensive.

So, anyway, to the best of my knowledge, Betz is including just 29 patients in his published studies. Which is roughly equivalent to the number of kids in the torso rotation studies. Hence my statement that it's all based on very few data points and that parents really have to guide themselves on glimmers.

growth spurt..

You're losing me with the growth spurt numbers. I have no idea how you'd pull that out of any of the published research on any of this stuff. How many of the kids in Betz' study are in their growth spurt? I don't know. Given that we simply don't have that data, we'd have to invent (as it seems you are doing below) and then compare the invented numbers, and I don't know of any statistical test that would make sense out of that. Why not just stick to the actual data?

Does it matter

Around 35 patients total, I think. You can't pull the growth spurt kids out as a separate study.

Sure, yes, it matters. What Mooney did was classic good science (IMO). He had a theory about something that might work, and he ran a pilot study and it looked like there was something there. Then Kevin followed up with a study which appeared to replicate the results. Is it a huge number? No, and I doubt it ever will be. There's just no one with deep pockets who could follow up. You'd need a surgeon, like Dr. Mehta, who is willing to enroll their own patients to get the necessary numbers. But, as I recall, the results were partly measured against natural history - you had a couple of AIS kids who reduced their curve - something which doesn't happen with natural history.

So, yes, it matters. That's why people were interested in it. And they're interested in Betz' work, even though his most recent published research (caveat: that I can find) only concerns 29 patients.

When the choices are bracing/fusion, then people are willing to take a chance on methods with even very small numbers. Totally reasonable, in my book.

If there is another scoliosis treatment that is seriously considered with less patients, I'd like to know what it is.

Yes, tethering. Seriously considered and casually recommended to parents new to the forum.

[Pooka1]

and I do not see what value it's adding to the discussion.

Then we are even as I think you obfuscate and dissemble.

This will not end.

[Pooka1]

The issue with any treatment other than the big two (bracing and fusion surgery) is that there are just very, very few patients in their studies. I was looking up info about vertebral bracing the other day and realized that the only data I could find from Betz was for 29 patients followed for 2 years.

Emphasis on "the only data that you could find from Betz."

What you can find and what is out there are two different things. As usual.

If there was five or less kids in McIntire's study of 15 kids and the same ratio in the 20 unique patients that Mooney studied (=7) then there were (at most) 12 kids TOTAL being studied for torso rotation in the growth spurt. How did they do? Does it matter when you have 12 patients?

If there is another scoliosis treatment that is seriously considered with less patients, I'd like to know what it is.

[hdugger]

You can stop . . . bracing.

Our son didn't brace, but my understanding is that there's a weaning period even after growth stops. Your doctor will know what the schedule is.

For PT, even with a smallish curve like your daughters, there's always some risk of progression through adulthood. Dr. Mehta (a very respected doctor in the UK, who also has scoliosis) said that she continues to do PT (side shift, in her case) because she believes that it keeps the spine healthy through adulthood.

only a handful of Dr. McIntire's patients

The issue with any treatment other than the big two (bracing and fusion surgery) is that there are just very, very few patients in their studies. I was looking up info about vertebral bracing the other day and realized that the only data I could find from Betz was for 29 patients followed for 2 years. Even for fusion, we don't have any good long term data with the current methodology. So, the unfortunate thing as a parent is that you're really flying blind. The best you can do is try to make sense of what little info is available, figure out the risks and benefits, and guide yourself accordingly. I don't know when, or if, the research will catch up on any of these things.

I doubt we could get that out of him even if he were alive given his other actions.

For Pooka, returning to our discussion in the other thread, I would consider this an ad hominen attack, and I do not see what value it's adding to the discussion. It would be enough to just say that you don't know how many of his patients were in their growth spurt. That statement would contain exactly the same amount of good information, without the unnecessary unpleasant speculation.

[Added correction - 12/29] Upon locating the Mooney paper in question, I discovered that the repeated reference to his dishonesty in double publishing is wholly unsupported by the facts. Mooney clearly states in his 2003 paper that he is using data from his earlier study, how many patients came from both studies, and that the table shows combined results. There is no question of an ethical violation of any kind. This renders moot the entire discussion about the ethics of this event, since it turns out that the said event never happened. I will add this correction to all of my posts concerning Mooney's research to reflect this better information

[Pooka1]

Hi Fahsai,

Has your orthopedist given you an estimate of how much growth Nalina has remaining? One measure of this is her Risser score on her x-ray, and I have heard of some surgeons judging this from an elbow x-ray.

Yes this is such a good point. You can stop with all the bracing and PT if she has little to no growth remaining.

The other issue is that only a handful of Dr. McIntire's patients were in the growth spurt during the study. That means less than 15 of those patients were actually being studied in terms of using torso rotation to change the curve permanently. And who knows how many of Dr. Mooney's patients were in the growth spurt. I doubt we could get that out of him even if he were alive given his other actions.

[leahdragonfly]

Hi Fahsai,

Has your orthopedist given you an estimate of how much growth Nalina has remaining? One measure of this is her Risser score on her x-ray, and I have heard of some surgeons judging this from an elbow x-ray.

[FAHSAI]

You're right, we sure are learning as we go.
There are things we do to make it a bit more comfortable for her and sometimes we have to readjust it a couple times before she is OK with it, but those
events are getting fewer and farther between. She is getting where she knows where it needs to be before I tighten the straps.
She is getting more and more used to it.

Also I'm not sure how much more growing she will do. She is 11, 4'8" and 60 lbs, eats like a horse too.
But I am only 5'8" and my wife is 5'1" so she may not grow too much more. I'd love to see her be taller than me but in truth
the sooner she stops growing the better for her in some way too.

[mariaf]

Night time braces seem much easier to wear than 23 hour/day hard braces. It really isn't in the same ball park. While my daughter was fine with the night time brace, even after she was fused she said she would have flat out refused to wear a 23 hour/day brace.

I agree completely. In my opinion, a night brace vs. a 23 hour/day brace are two totally different animals.

[mariaf]

Last nite was the first(and hopefully last) nite I had to take the brace off her in the night. She ate a big dinner very late (too many bread sticks) and she felt like she was going to throw up after she was in bed for a couple hours. I decided the best course of action was to let her out of it. She and I agreed on no more food right before bed time.

See, you are learning as you go :-)

When my son was younger, we found that it was best for him not to eat dinner too late. In fact, we would try to make sure his big meal was 2-3 hours before bedtime. Sometimes lying down makes it worse, and some kids are more prone to getting sick or having reflux than others, so you may find that it's best to limit your daughter to only a light snack within a couple of hours of going to bed.

Of course, there will be those occasions where a late dinner can't be avoided, but missing a night here or there in the brace (or putting it on later) won't make much difference as long as it's not something you do all the time.

You are doing a great job - keep up the good work!

[leahdragonfly]

That's great that she is doing so well in it, fahsai! I agree the night brace can be much less difficult to tolerate, especially for the heavy sleepers. After the first few weeks and once the brace is adjusted correctly, it seems like many kids and families can fall into a routine that includes the night brace without much difficulty.

I know a father through my work whose daughter (who happens to live in Portland BTW) just was released from a night brace. She started wearing the brace at age 10, with curves in the high 20's, and was lucky I guess to complete her growth spurt and menses early. She is now 12 y/o, something like 5'6", and deemed to be through nearly all of her growth. Her orthopedist is still monitoring her, but they think she is essentially skeletally mature and will not need any further treatment. I think these girls with scoliosis who complete their growth early are lucky!

Keep up the good work. We would love to hear how things are going for you and Nalina.

[FAHSAI]

I think my daughter would have trouble with an all day brace too.
We are actually kind of shocked that she is getting along so well with the night time one.
Probably just that she is a good sleeper is the only reason it works so well. She goes to sleep easily and would sleep till noon if we would let her. So
I suspect that is the reason this is working so well.

Last nite we made sure she didn't eat too close to bed time and she was fine with the brace again.