DD recently diagnosed -- any suggestions?

[LindaRacine]

Dustin...

Your posts are coming across, at least to me, as an advertisement for a method that is not proven, and which has not worked yet for your family. If you continue hyping your method, I will be forced to remove all of your posts. You've said what you wanted, now there's no reason to post again. It is unethical to try to convince people to engage in a method that is not, at the very least, peer reviewed. If the method is published in a peer reviewed medical journal, feel free to post that information.

Sharon... I know you want to engage, but I'd like to encourage you to not react.

Thanks.

--Liinda

[Pooka1]

Linda okay. I think unless he can prove he isnt a chiro, I think the best way forward is to remove all his posts and threads. Chiros do not belong on this forum.

[Dustin76]

Dustin...

Your posts are coming across, at least to me, as an advertisement for a method that is not proven, and which has not worked yet for your family. If you continue hyping your method, I will be forced to remove all of your posts. You've said what you wanted, now there's no reason to post again. It is unethical to try to convince people to engage in a method that is not, at the very least, peer reviewed. If the method is published in a peer reviewed medical journal, feel free to post that information.

Sharon... I know you want to engage, but I'd like to encourage you to not react.

Thanks.

--Liinda

Linda, can I talk to you by phone or e-mail? I assure you that I am a licensed physical therapist in the state of Washington interested in seeing my own kids and other kids given the best treatment possible. I have no vested interest in this treatment facility that I am talking about. I have talked to the parents of these kids at various stages of treatment and they are experiencing what the current literature says is impossible for AIS especially but other types of scoliosis as well. In perusing this forum, there are lots of unproven methods discussed on various threads. I guess I'm not understanding this reaction at all, but do what you must. I do want to speak to the National Scoliosis Foundation board about this though. We are a family dealing with a lot right now, but I didn't expect this.

Thanks.

[Dustin76]

I was in the process of what I thought was a good discussion with Sharon. I was preparing to reply to her but I will hold off for now.

[Dustin76]

Dustin...

Your posts are coming across, at least to me, as an advertisement for a method that is not proven, and which has not worked yet for your family. If you continue hyping your method, I will be forced to remove all of your posts. You've said what you wanted, now there's no reason to post again. It is unethical to try to convince people to engage in a method that is not, at the very least, peer reviewed. If the method is published in a peer reviewed medical journal, feel free to post that information.

Sharon... I know you want to engage, but I'd like to encourage you to not react.

Thanks.

--Liinda

Linda,

I just e-mailed Joseph P. O'Brien with my concerns. Maybe he is a reasonable person.

[Pooka1]

I think if he limits his posts to how his kids are doing, stops discussing other patients, and completely drops the mystery as to what the chiros are doing, it might be okay. It is important not to mention a treatment and then go on to say he can't discuss it. That is what chiros and other woo-woo purveyors do to hide the fact that there is no evidence of efficacy. Honest people don't do that. If it really was helping kids he would want it out.

The main take home at this point is that, like Schroth by the action of her grandson admitted that it doesnt work, at least one chiro outfit has admitted chiro doesnt work by going to 23-24 hour a day bracing. They saved rational people from pointing that out.

That is progress of a sort.

[LindaRacine]

Dustin...

I'm not interested in talking with you via phone or email. As Sharon and Ed can attest, we've been this way before. Every so many years, a chiropractor pops up with a new miracle cure for scoliosis. The chiropractors involved always claim incredible results, and even manage to get patients/parents to proclaim success. If there really was success, we'd be seeing peer reviewed journal articles. Unfortunately, there is no science behind these cures.

As Sharon suggested, I'm fine with you posting about your child's treatment, but please refrain from encouraging others to try the treatment. You don't want to take up this debate with Sharon. She chews up charlatans for lunch and spits them out just for fun. ;-)

--Linda

[Dustin76]

Dustin...

I'm not interested in talking with you via phone or email. As Sharon and Ed can attest, we've been this way before. Every so many years, a chiropractor pops up with a new miracle cure for scoliosis. The chiropractors involved always claim incredible results, and even manage to get patients/parents to proclaim success. If there really was success, we'd be seeing peer reviewed journal articles. Unfortunately, there is no science behind these cures.

As Sharon suggested, I'm fine with you posting about your child's treatment, but please refrain from encouraging others to try the treatment. You don't want to take up this debate with Sharon. She chews up charlatans for lunch and spits them out just for fun. ;-)

--Linda

I was enjoying my conversation with Sharon and would love to continue it. I had a reply to her half ready until you intervened. Believe me, I already have respect for Sharon, but I have absolutely no fear of a good debate with her or anyone else. However, it looks as though a debate with her is forbidden here.

[Dustin76]

Dustin...

I'm not interested in talking with you via phone or email. As Sharon and Ed can attest, we've been this way before. Every so many years, a chiropractor pops up with a new miracle cure for scoliosis. The chiropractors involved always claim incredible results, and even manage to get patients/parents to proclaim success. If there really was success, we'd be seeing peer reviewed journal articles. Unfortunately, there is no science behind these cures.

As Sharon suggested, I'm fine with you posting about your child's treatment, but please refrain from encouraging others to try the treatment. You don't want to take up this debate with Sharon. She chews up charlatans for lunch and spits them out just for fun. ;-)

--Linda

Can I continue my discussion with Sharon as long as I don't recommend to specific individuals on this forum? She responded to me point by point. I would like the opportunity to do the same. I also have my son's (from about 6 weeks ago) out of brace and in brace images and my daughter's images from today. Her brace was just finished today. Is there a way to post images like Ed did? I want the most scrutinizing opinions, so I'd love to see Sharon's or whoever's take on it. We could back out of this treatment if convinced.

[Pooka1]

1. Did either Janzen ask you to post on this forum?

2. Does either Janzen know you are posting on this forum?

3. How did you find this forum?

[Dustin76]

1. Did either Janzen ask you to post on this forum?

2. Does either Janzen know you are posting on this forum?

3. How did you find this forum?

No to the first 2 questions. I found this forum via a google search. The first thing I did when I found this forum was search "Janzen" with no results found. I was surprised to find no mention of their work, be it positive or negative.

I did talk to 2 mothers of AIS patients at their facility(yes, they treat primarily AIS and according to the parents, they are getting very significant curve reductions - most are willing to show before and after images and are glad to tell their stories) that reported being warned by acquaintances that this was all going to be a hoax. These warnings are understandable considering that the preponderance of evidence in the literature indicates that AIS curve reduction has never been done.

I'm not a spokesperson for the Janzens, but I would like to be able to speak freely about my experiences.

My goal is not to get on here and defend the field of chiropractic. My goal is to lay my experiences on the forum table and see what people have to say. Another goal was to find more people who have had experiences at Janzen's, but there is nothing here.

My wife and I are scared, frustrated, skeptical, and yet now hopeful, and building trust all at the same time. I'm sure you know all too well with what you must have been/still are going through.

Dustin

[Pooka1]

No to the first 2 questions. I found this forum via a google search. The first thing I did when I found this forum was search "Janzen" with no results found. I was surprised to find no mention of their work, be it positive or negative.

I believe you. In re not finding Janzen, this forum is about a serious medical issue. Most parents have no way or sorting medicine from woo-woo. That's why there is no chiro on here or if there it, someone hopefully steps up to point out the lack of evidence for chiro in treating scoliosis.

I did talk to 2 mothers of AIS patients at their facility(yes, they treat primarily AIS and according to the parents, they are getting very significant curve reductions - most are willing to show before and after images and are glad to tell their stories) that reported being warned by acquaintances that this was all going to be a hoax. These warnings are understandable considering that the preponderance of evidence in the literature indicates that AIS curve reduction has never been done.

Just to be clear, in re AIS curves of other patients,

1. EXACTLY how much have these curves decreased?

2. Do these decreases persist at least 24 hours after brace removal?

If decreases of more than the read precision (i.e., >5*) persist more than the 24 hours out of brace then please post the before/after radiographs with amount of time out of brace.

It is very important to avoid arm waving because most parents are untrained in sorting medicine from woo-woo.

I'm not a spokesperson for the Janzens, but I would like to be able to speak freely about my experiences.

I think your experience with your kids is relevant. You have been clear that you are using bracing and not chiro so that is not controversial. In fact the idea that a chiro outfit is going to bracing and abandoning chiro is a step forward although chiros are not trained in any of that stuff. They are not trained in science so they are definitely not trained in research. The main thing is if you make a claim X of this treatment, you should post radiographs showing that claim. With chiros and ANY treatment they dream up, the bar is VERY VERY VERY high for evidence given their past performance.

My goal is not to get on here and defend the field of chiropractic. My goal is to lay my experiences on the forum table and see what people have to say. Another goal was to find more people who have had experiences at Janzen's, but there is nothing here.

What set off alarm bells is you started talking about other patients and then you got mysterious about not revealing their methods. If their methods work then you and they should be shouting it. Because the treatment is a unpublished brace, there is no way anyone can scoop the Janzens. Therefore there is no reason to be mysterious.

My wife and I are scared, frustrated, skeptical, and yet now hopeful, and building trust all at the same time. I'm sure you know all too well with what you must have been/still are going through.

Dustin

I believe you. I hope you are also working with a board certified pediatric orthopedic surgeon and that your kids don't miss any tethering window. It sounds like Janzen is having 5 year old boys potentially wearing a brace 23-24 hours a day for over 10 years. That may or may not be ethical in the age of tethering. Same for real doctors suggesting that.

[Pooka1]

The bottom line is that extraordinary claims require extraordinary proof.

An alarm went off with your posts because you made several extraordinary claims. It would have been perfectly fine and welcome if extraordinary proof accompanied your extraordinary claims.

Going forward, just pony up evidence especially for the claims that go against the tide in the literature. It is possible a chiro developed a brace better than all other braces. But the chances of that are so low that unless a boatload of evidence is presented in the same breath, it is necessarily going to sound like a chiro or a shill for a chiro.

Then there is the ethics of bracing 24/7 for a decade in the dawning age of tethering. Doctors need to confront that also.

[Dustin76]

Sharon,

I don't have time to respond to you point by point as I hope to soon, but here's some of the more important points in response to you.

1. Not every kid that walks through their doors are braced near to 24 hours/day. They see primary AIS cases and I get the impression that a lot, but not all of those cases get the 22-24 hours/day brace, especially if they have a short window before skeletal maturity. For JIS cases or cases with a known cause, bracing treatment varies more widely. Our son has been lightly but still rigidly braced and gradually worked up to 13 hours a day. He gets 9-10 hours during the night and the rest during the day. I asked about the 13 hours. Matt Janzen pointed out that the literature for traditional bracing indicates that positive results really drop off with anything less than 13 hours/day. So in their thinking, this is better than doing nothing and is still safe. All rigidly braces patients return every 3 months for adjustments to braces, to get new braces, or to make any changes to the plan. They are much less predictive with my son's potential for curvature improvement because most of their 10 years of data is on AIS cases. All of the statistics reported on their website pertain to AIS cases. They feel very confident that my son's curves with at least not worsen. They initially said that if they could get him to neutral in brace, then it seems promising for some level of curve reduction over time.

2. Like I said, I don't speak for them, but I don't think they care so much what happens if say, an 11 year old AIS patient has curve improvement that regresses to some extent over 24 hours or longer for that matter. I think they would expect some level of regression, but I'm not sure. The bottom line goal for them, as I understand it, is to get the patient to safely get the curves as close to neutral as possible (this is progressive over months to years if they can't initially get to neutral) and then keep neutral or as close as possible until skeletal maturity. They said that once a kid gets through the most likely time of curve progression (puberty growth spurts), a maintenance phase can sometimes work with less brace time.

3. As far as specific examples of initial imaging versus out of brace final results, they have lots of those on their website. I'm sure that you can say that they could be fabricated, but based on my first hand experience and talking to parents of patients, I do not believe that they are. They have some pretty extensive statistics and use these statistics to give average curve reductions and best curve reduction by severity of initial AIS curves.


Got to go for now. I know I didn't address everything that you said, but I will when I get a chance. So far, I can't share images on here I guess, but I could share my kid's images with you by e-mail and I could ask for permission to share specifics/images of other kids that we have met.

[Pooka1]

All of the statistics reported on their website pertain to AIS cases.

That is far from obvious given the several cases of JIS they show in their before/after series. Although many JIS cases go south unfortunately, apparently it is not rare so see a reduction in JIS either with or without a brace. There was a Greek study.... Soucacus(?) that showed not only improvement in some JIS cases without treatment but also changing curve type and apex and such if you can believe it. JIS can be squirrelly. There are threads on this group about JIS cases resolving without treatment and also braces reducing curves (unlike AIS). This is why JIS and AIS must be crunched separately and why people need to be careful about claiming a brace worked for a JIS case just because a kid wore it.

2. Like I said, I don't speak for them, but I don't think they care so much what happens if say, an 11 year old AIS patient has curve improvement that regresses to some extent over 24 hours or longer for that matter. I think they would expect some level of regression, but I'm not sure.

They are showing several cases of purported AIS curve reductions. Since there is no medical evidence for that, I conclude either those are in brace radiographs or they were shot immediately after the brace was removed. There is no third option available to explain the AIS curve reductions.

3. As far as specific examples of initial imaging versus out of brace final results, they have lots of those on their website. I'm sure that you can say that they could be fabricated, but based on my first hand experience and talking to parents of patients, I do not believe that they are. They have some pretty extensive statistics and use these statistics to give average curve reductions and best curve reduction by severity of initial AIS curves.

See my previous comment in re AIS. Remove the JIS cases from this analysis.

Got to go for now. I know I didn't address everything that you said, but I will when I get a chance. So far, I can't share images on here I guess, but I could share my kid's images with you by e-mail and I could ask for permission to share specifics/images of other kids that we have met.

You should be able to share images. See the "insert image" icon second from right. While we will be happy to see a reduction in the curves of your children, there is no a priori reason to think the brace did anything in JIS.