Stop trying to convince that official western medical community is the only option..

[rohrer01]

Hdugger,
Why are you trying to divide the forum into "surgical" and "non-surgical" camps? There's room for all kinds of therapies. As far as I can tell, most people that have had surgery have tried at least some non-surgical approaches. So where do those of us that non-surgical approaches have failed fall within your categorization of forum members? Lest I remind you that for some of us, surgery is also not an option, as in my case and your son's case. I think categorizing people according to your own standards is just wrong. It makes everyone who ends up having surgery, despite valiant efforts at non-surgical approaches, feel like a failure and forces them into the "surgical camp". There are not two camps here and your suggestion that there are causes contention among forum members. Unless you just like to stir the pot. I'm really disappointed in these kinds of posts that you have been posting. I don't care that you have experience running other online forums. That just gives you more experience on how to push people's buttons and take things off track AND makes you more accountable for continuing contentious conversations. There is no immoral work being done on this forum. There is simply a worldwide base of different personalities and opinions. If you think one member is being a bully, then report the bullying and don't try to divide the whole forum into camps.

[Pooka1]

Hey Rohrer, one of the newer members has a BS in Genetics.

Hearing that is like getting a new lease on life. You will have back up now hopefully. All I can really do is carry your pencil. :-)

[mariaf]

Hdugger,
Why are you trying to divide the forum into "surgical" and "non-surgical" camps? There's room for all kinds of therapies. As far as I can tell, most people that have had surgery have tried at least some non-surgical approaches. So where do those of us that non-surgical approaches have failed fall within your categorization of forum members? Lest I remind you that for some of us, surgery is also not an option, as in my case and your son's case. I think categorizing people according to your own standards is just wrong. It makes everyone who ends up having surgery, despite valiant efforts at non-surgical approaches, feel like a failure and forces them into the "surgical camp". There are not two camps here and your suggestion that there are causes contention among forum members. Unless you just like to stir the pot. I'm really disappointed in these kinds of posts that you have been posting. I don't care that you have experience running other online forums. That just gives you more experience on how to push people's buttons and take things off track AND makes you more accountable for continuing contentious conversations. There is no immoral work being done on this forum. There is simply a worldwide base of different personalities and opinions. If you think one member is being a bully, then report the bullying and don't try to divide the whole forum into camps.

I agree completely that everyone would be better served if we aren't divided into camps (surgical and non-surgical). I'm not directing this at anyone, but rather asking everyone to listen to what rohrer is saying. I think part of the problem is that often - and perhaps this is human nature to a degree - people make assumptions about others that turn out to be incorrect. I suppose I would be placed in the "surgical" camp because my son had surgery. However, I don't consider myself "pro surgery". In fact, I don't think anyone is "for" or "against" surgery, but rather realize that sometimes it is the only option. As has often been said on this forum, nobody WANTS surgery.

I happen to have a long-standing friendship with the woman who runs the infantile/casting forum. She advocates serial infantile casting as a way to avoid surgery in young children. I think she is spot on with this approach. She will recommend trying anything to avoid surgery. However, in cases where casting is not effective, she has referred parents over to me when their kids hit a certain age if those parents have expressed in interest in fusionless surgery (VBS, tethering).
In turn, I have referred numerous parents over to her who have contacted me regarding scoliosis in a very young child. I do not view her as "anti" surgery and she does not view me as "pro" surgery. We both want to help these kids in any way we can. For some, surgery is the best option. For others, it's not.

Why can't we adopt that mentality here??

[Pooka1]

I agree completely that everyone would be better served if we aren't divided into camps (surgical and non-surgical). I'm not directing this at anyone, but rather asking everyone to listen to what rohrer is saying. I think part of the problem is that often - and perhaps this is human nature to a degree - people make assumptions about others that turn out to be incorrect. I suppose I would be placed in the "surgical" camp because my son had surgery. However, I don't consider myself "pro surgery". In fact, I don't think anyone is "for" or "against" surgery, but rather realize that sometimes it is the only option. As has often been said on this forum, nobody WANTS surgery.

I happen to have a long-standing friendship with the woman who runs the infantile/casting forum. She advocates serial infantile casting as a way to avoid surgery in young children. I think she is spot on with this approach. She will recommend trying anything to avoid surgery. However, in cases where casting is not effective, she has referred parents over to me when their kids hit a certain age if those parents have expressed in interest in fusionless surgery (VBS, tethering).
In turn, I have referred numerous parents over to her who have contacted me regarding scoliosis in a very young child. I do not view her as "anti" surgery and she does not view me as "pro" surgery. We both want to help these kids in any way we can. For some, surgery is the best option. For others, it's not.

Why can't we adopt that mentality here??

Both this post and Rohrer's are spot on. Well put.

[flerc]

Unless you just like to stir the pot. I'm really disappointed in these kinds of posts that you have been posting. I don't care that you have experience running other online forums. That just gives you more experience on how to push people's buttons and take things off track AND makes you more accountable for continuing contentious conversations. There is no immoral work being done on this forum. There is simply a worldwide base of different personalities and opinions. If you think one member is being a bully, then report the bullying and don't try to divide the whole forum into camps.

Good defense, Rohre01!! That is, good attack to people trying to have a place here. Certainly as your friend suggested in some sense once, you might replace her.
But certainly is early to be thinking in that. You are a perfect equipment! She does her immoral work and you (of course too) defend her for people trying to stop it.. also I believe you have to learn very much yet.. but Congratulations anyway! You are in the path without any doubt!.

[flerc]

Of course when I say you Good attack, I’m referring only that you show you are learning to use her arms.. only that. And of course something as logic, respect.. are not needed, certainly exactly all the contrary.

[Pooka1]

Of course when I say you Good attack, I’m referring only that you show you are learning to use her arms.. only that. And of course something as logic, respect.. are not needed, certainly exactly all the contrary.

Has your daughter tried any of the conservative treatments mentioned? What were the results?

[flerc]

I have absolutely nothing to talk about my daughter with people bad intentioned as you show every time you are.
If you want to talk with me about any other issue, even issues I'm trying to understand as bone remodeling, respond first to the serious accusation I did about you.

[hdugger]

It is not the messenger who creates the message. The camps exist, the contentions exist. I'd divide the camps roughly into those who think that calling other parents blind/blind/naked is funny and acceptable behavior, and those who don't. Those who think that calling other parents blind/blind/naked is *not* contentious, but that saying that you find being called blind/blind/naked insulting *is* contentious.

So, the camps are there. The ugly behavior predates my response by about two years.

I am largely, have been largely, silent on this issue. For years. I honestly thought it was the virtuous path. Put people on ignore and just try to focus on the task as hand. Flerc's call of complicity really woke me up. He's right and I was wrong.

I have written to the NSF, this weekend for the first time, to ask for help. I wrote when I realized that I was completely and totally out of tools to resolve a problem which I consider deathly serious. Whether or not it will change anything, I do not know. I am hopeful, but I do not know. But, I am prepared to leave the forum, must leave, if it stays the way it is. I really cannot be party to something which I think is genuinely harming people.

I would note that, those of us pursuing non-surgical methods have felt uncomfortable and attacked for years now. Openly attacked and sniped at. Everywhere across the forum. When I talk openly about it in two threads, when *you* feel uncomfortable and attacked, for less than a week, suddenly it's the end of the world and simply must be stopped.

I'll tell you what. You get the 20 or so folk medicine threads of the first page of the Research Forum removed. You get Pooka to stop posting unpleasant things to the one thread where Dingo posts. You take all of those discussions about what an idiot he is into private messaging and get it off the forum. You talk to the moderators about deleting threads about how bracing parents are lying to their children, how they're cavelier and uncaring. And then we'll have a talk about whether or not I can stop posting contentious things in these two threads.

[In response to huge misunderstanding, clarifying that this post was a specific response to Rohrer *NOT* to the forum in general]

[flerc]

There is no immoral work being done on this forum.

You are now defending also her work in a direct way! Of course I cannot have any more any doubt.

[hdugger]

Or, better still, ignore all of my posts and just look at the evidence.

Where are all of the non-surgical patients? *All* of the exercise, and most of the bracing parents have left the forum - many of them to join another, private group.

Either there's something oddly correlated about wanting to pursue something other then surgery and having discussions in private groups. Or something in this forum has made them all leave.

Who's creating the camps again? The ones who feel forced to leave? Or the anti-conservative treatment ones who remain?

[In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]

[Victine]

I would note that, those of us pursuing non-surgical methods have felt uncomfortable and attacked for years now. Openly attacked and sniped at. Everywhere across the forum. When I talk openly about it in two threads, when *you* feel uncomfortable and attacked, for less than a week, suddenly it's the end of the world and simply must be stopped.

I'll tell you what. You get the 20 or so folk medicine threads of the first page of the Research Forum removed. You get Pooka to stop posting unpleasant things to the one thread where Dingo posts. You take all of those discussions about what an idiot he is into private messaging and get it off the forum. You talk to the moderators about deleting threads about how bracing parents are lying to their children, how they're cavelier and uncaring. And then we'll have a talk about whether or not I can stop posting contentious things in these two threads.

Yes. Bravo! Spot on.

[flerc]

Of course, the only division here is about people trying to solve a health problem (regardless the kind of solution they may think is the best) and people having other interests as they are showing to have.

[hdugger]

One clarification. I think Flerc is directly engaging. I'm not. I have the "anti-conservative treatment" on ignore, so I only see what Flerc quotes.

I am not writing to you. I'm writing for a bracing parent who visits the forum only to discover that there's an entire thread, with the words "bracing parents" and "lying to their kids" in the title, where people are comfortably just talking away. I'd like that parent to know, clearly and precisely, that that does not represent some kind of consensus opinion. I'm writing to the bracing parent who is scared and looking for assurance and who searches on the word "brace" and the first four posts that come up are other parents talking about how unfeeling and cavalier it is to even consider bracing. I want them to know that is not what everyone thinks.

I'm writing for a parent who, like a post I saw the other day, asks about where they might talk to other people about torso rotation and is told, matter of factly, that there's just one or two people on the forum, and just 35 people in research studies anywhere, who are even doing that so, pretty much, don't hold your breath. Fortunately for that poster, we had Kevin McIntire right there to answer the call, but how often might one expect *that* to happen. And I want the parent who reads through an exercise thread and hears the steady beat of "only this kid" "4 hours of exercise a day" "might get dengue fever" to not get discouraged by the barrage of conjectures.

I don’t actually love being snippy and unpleasant (although I do sometimes amuse myself), but I just cannot think of anything else to do. I can’t just remain complicit. My normal response of just trying to be calm and ignoring has, I think, made the problem much, much worse. I was really horrified when I took the small group of people I'm ignoring off of ignore and just got a real look at what it must look like to someone stumbling across it for the first time. I should have stayed engaged and tried to counter it all along – I think I really made a bad mistake. I tried to repair it this weekend by just deleting every post I wrote during my “ignore” days so that I don’t seem to be virtually sitting in these discussions and nodding my head.

So, I’m leaving breadcrumbs. Either help will arrive and the forum will become a welcoming place for all parents, not just some. That would be the best outcome – and then I can erase these posts and go back to doing what I want to do. But, if help *doesn’t* arrive, then I’m leaving and leaving some breadcrumbs behind to let those parents know that they have the tools within themselves to figure out what's best for their child, to trust themselves, and not to feel pushed, badgered and bullied into doubting themselves. Parent, professional, and child. That is full extent of people who might conceivably have enough details to know what you should do. Anyone else who tells you they're certain you must do x, y, and z should be given a good wide berth. And if they start manipulating you - if they drop the "fact" facade and just tell you that you're a bad, bad person until you follow their medical advice, you just run as fast as you can.

[In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]

[flerc]

And if they start manipulating you - if they drop the "fact" facade and just tell you that you're a bad, bad person until you follow their medical advice, you just run as fast as you can.

Or just do something best: say to those persons what you think about people doing something so much immoral and tell to everyone what kind of forum is this. Probably more people would decide to do the same and if it happens, they could not continue doing their immoral work and this would be kind of forum it should to be.
I'm not sure if it could take any sense to have any hope in other kind of help.