The Axial Biotech Test is Here

[mariaf]

This (doctors being conservative and not wanting to change) arguably needs to change. Kids are being tortured with bracing for no reason. That one paper I posted documented a huge overtreatment with bracing which was known or suspected from other studies. One study estimated that 9 kids are treated with bracing for one that actually might have benefited. That is outrageous in terms of suffering an cost.

I completely agree.

Bracing is a good example of why it needs to change. I would also include the fact that there are not nearly enough doctors performing VBS and tethering for that VERY reason, that they want to stick with things they are familiar with and do things the way they have always done them. Many of these doctors will refer patients to a doctor who DOES perform VBS, for example, but will say they are not yet performing it themselves. I'd like to know what the heck they are waiting for since they obviously feel the procedure is reasonably safe and effective - otherwise they would not be referring patients to other doctors for a consult.

[rohrer01]

Flerc,
It is not a matter of disagreeing. I agree that there should be some oversight of any kind of medical tests. But who should do it? Do you really trust a government with your health? Some would say yes, others no. That's a matter of politics. I'm pretty sure there ARE checks and balances in place, but I don't know what they are. If they aren't in place, then they should be. We agree on that.

[flerc]

I agree with you, flerc that I would want to know what the doctor is recommending and why he is recommending it regarding the treatment of my son. And, believe me, I have never been afraid to ask every question that was on my mind. I guess at the end of the day, it's a partnership between parent and doctor when deciding on treatment, but I do believe that if I had the best doctor in the world as you say, or one of the best, his or her knowledge would far outweigh mine so as long as their course of action made sense to me, I would go along with it because I would feel it was in my son's best interest to do so. But I do think parents should be informed and should fully understand all aspects of their child's care and never be afraid to question what they don't understand.

Mariaf, I understand and I respect what you say but I believe that sometimes is not clear which could the right decision. If you know that you’ll make a terrify and irreversible damage to your son doing what the best doctor say, because he believes that the chances of a worst damage in the future are high, I think that is not a simple decision. Mainly if nobody may assure that a Dr of the XXII century might believe that the chances of something worst in your particular case are not so high and he know that because he has a knowledge not acquired yet for Drs of our age.. and who knows if also he would not recommend you something known in your age. .

So in some cases, Drs of our century may be wrong in their recommendations as we know they were in some cases Drs of gone centuries and you may do something terrible to your son trusting in them. And of course you might do something worst not doing what they recommend. It’s not a simple decision.
There are areas where the knowledge of our Drs we may say is enough and of course it would be a madness to doubt in does what they say. If your son would have appendicitis and you refuse the surgery, there would not be any doubt about your wrong and unacceptable action. This problem is well known and surely none Dr of the future would doubt that the current Drs’s solution would be the best option for your son in your century.

But if the problem of your son, even is known for Drs since centuries ago, remains being a mystery for them and they only has old and bad solution for your case, guaranteeing irreversible damages, I believe that nobody may say that is clear what to do.

[leahdragonfly]

I think that Government should to be sure about the reliability of every kind of test used in medicine

I agree that some sort of oversight somewhere would be good, but I think it is extremely idealistic to expect the government to guarantee the reliability of EVERY medical test offered. The expense of that to the government would be absolutely staggering. And it's not like the government has a great track record for efficiency or integrity. I think it is more the role of the physician to evaluate the legitimacy of the test and decide if he/she wants to offer it in their practice. Physicians are trained in medicine, but the government is not. At some point every patient or parent has to find a doctor they trust, who they believe is the best and most qualified choice for them, and trust that person's judgement and training, as Maria said.

On a side note, my two kids and I just sent in spit DNA samples to Axial Biotech and we are participating in their research study, hopefully aimed at genetic testing/predictive tests for progression in JIS. We are a good family to study with all three of us having scoliosis.

[flerc]

Rohrer, Leahdragonfly, certainly I not trust a priori in any Government. I have seen in my life few good governments and so much of the worst of the worst. But is their responsibility to assure that things work as they should to works. This is the role of the State and governments should to execute the action needed to grant the right function of the State.
The health of course is some of the most important issues and the State should to assure that controls are done as they should.
Dr’s knowledge of course is limited even for the best, specially in some areas and of course they need the best tools, mainly since some decades ago, when something as a ‘study oriented decision’ have begun. It seems that now they almost not need to see the patient, to touch it.. as was some decades ago. Now they mainly see the outcomes of studies as images or tests. So the State should to assure us that the sufficient proofs were done in order to trust in those tests as the scolioscore. and if them were not done yet, I believe the cost to do it could not be so big. I don’t know if hundreds or thousands of adults would be needed to being tested with the scolioscore.. but certainly if the cost would be estimated they says something as.. about how many cases of people with this pathology we are talking this test would be very important? Only the 1%.. waste the money in something more important!
But maybe Axial Biotech is a disinterested company only thinking in our welfare as some here said (I’m not being ironic) and they agree to affront some part of the costs.

[flerc]

Physicians are trained in medicine, but the government is not.

The State should to contract people with the expertise required for doing or supervising such kind of controls.

[leahdragonfly]

Flerc,

Why the government though? They have no medical training. They can barely manage most country's finances. Leave the medical issues to the experts, the doctors and researchers. The government can not do everything for everyone and should not be expected to.

[Pooka1]

But if the problem of your son, even is known for Drs since centuries ago, remains being a mystery for them and they only has old and bad solution for your case, guaranteeing irreversible damages, I believe that nobody may say that is clear what to do.

Yes. We don't have all the answers. Some people are in impossible situations. Life is unfair. What can you do?

[rohrer01]

On a side note, my two kids and I just sent in spit DNA samples to Axial Biotech and we are participating in their research study, hopefully aimed at genetic testing/predictive tests for progression in JIS. We are a good family to study with all three of us having scoliosis.

I didn't know you also have scoliosis. I didn't know you have another child with it, either. Yes, you are a good family to study. Is there any scoliosis on your wife's side of the family?

[leahdragonfly]

Hi rorher,

that was me (Gayle) who posted about my 2 kids with JIS, as well as myself with scoliosis (braced in jr high, progressed after age 40). My 7 y/o son was diagnosed in April with an 18-degree thoracic curve which we are currently observing. My father apparently has a very mild curve. No known scoliosis on my husband's side of the family.

My son is actually the perfect example of a child in which the Axial test could be very helpful in deciding on treatment. He's young with tons of growing left to do, with a mild curve now but a strong family history. Will he progress, nobody knows at this point. Although it is quite likely that he will, maybe he will get lucky. If he doesn't get lucky and does progress we will have him evaluated for possible VBS or tethering. Unfortunately he is currently outside of the established criteria for the Scoliscore test, which is why we wanted to participate in the research. Hopefully someday soon there will be more answers for families like ours.

[flerc]

Yes. We don't have all the answers. Some people are in impossible situations. Life is unfair. What can you do?

I wish to know that. It remembers me an old chapter of Star Trek (the greatest Tv serie of all the times) when Mr. Spok was in a little spaceship in an hostile planet full of monster and if they try to leave the planet the spaceship (I don’t remember if it was exactly like I say) would goes to the sun and they would die burned in few minutes, but they cannot defeat the monsters who were trying to enter to the spaceship.

Of course all they prefer to died fighting than dying burned in the sun, but Spok realized that his belief system and logic was absolutely useless, so he decided to do the most crazy and absurd that would be done in this situation, that is, choosing the option that seems to be worst and they went towards the sun and they began to burn.. and something that even Spok could never imagine happened, so of course he choose the best option. . I miss so much that series.

[Pooka1]

I wish to know that. It remembers me an old chapter of Star Trek (the greatest Tv serie of all the times) when Mr. Spok was in a little spaceship in an hostile planet full of monster and if they try to leave the planet the spaceship (I don’t remember if it was exactly like I say) would goes to the sun and they would die burned in few minutes, but they cannot defeat the monsters who were trying to enter to the spaceship.

Of course all they prefer to died fighting than dying burned in the sun, but Spok realized that his belief system and logic was absolutely useless, so he decided to do the most crazy and absurd that would be done in this situation, that is, choosing the option that seems to be worst and they went towards the sun and they began to burn.. and something that even Spok could never imagine happened, so of course he choose the best option. . I miss so much that series.

Excellent post!

Post of the month nomination!

[flerc]

I glad you like it.

[rohrer01]

Hi rorher,

that was me (Gayle) who posted about my 2 kids with JIS, as well as myself with scoliosis (braced in jr high, progressed after age 40). My 7 y/o son was diagnosed in April with an 18-degree thoracic curve which we are currently observing. My father apparently has a very mild curve. No known scoliosis on my husband's side of the family.

LOL...I'm so sorry! I though it was Flerc!!!

[rohrer01]

I wish to know that. It remembers me an old chapter of Star Trek (the greatest Tv serie of all the times) when Mr. Spok was in a little spaceship in an hostile planet full of monster and if they try to leave the planet the spaceship (I don’t remember if it was exactly like I say) would goes to the sun and they would die burned in few minutes, but they cannot defeat the monsters who were trying to enter to the spaceship.

Of course all they prefer to died fighting than dying burned in the sun, but Spok realized that his belief system and logic was absolutely useless, so he decided to do the most crazy and absurd that would be done in this situation, that is, choosing the option that seems to be worst and they went towards the sun and they began to burn.. and something that even Spok could never imagine happened, so of course he choose the best option. . I miss so much that series.

Yet another Trekky!!! LOL ...I liked the original when I was a kid much better, but Next Generation eventually grew on me. Data, the new "Spock" character, always searching for emotion.