Waiting and Watching - Parents Beware

[jenny]

I agree with concerned dad re the brace. We have been very diligent about having our son wear his back brace for over 5 years, yet he still needs surgery next month & he is 6 years old. Every day for the past year he has whined & cried over his back brace; it has definitely affected his self-esteem. If we had known he would for sure need the surgery, we would have stopped the brace a long time ago- it's not worth it...

[Ballet Mom]

jenny,

I'm sorry to hear that your son has to have surgery. As you probably know, infantile and juvenile scoliosis is a completely different ballgame from AIS. I have a hard time thinking of bracing a child for that many years also. I am very happy that they are developing alternatives to bracing for kids who have to wear braces for so many years.

However, perhaps the brace slowed down the curve a bit and bought your son some extra time for additional growth that he wouldn't have had without the bracing? Who knows, obviously it can't be proven one way or the other, but the possibility is certainly there.

Good luck.

[Ballet Mom]

CD,

As Ballet Mom points out, the FREEDOM to make the decision is important.

Thank you, I really do think that is very important. I would be very angry if my original surgeon hadn't prescribed a brace for my daughter, whether it ended up working or not.

CD, I'm hoping your daughter did get a divine intervention. Everyone else can chalk it up to a spontaneous corrrection, and I'll chalk it up as being a result of your heartfelt prayer.

By the way, I'm fine if people think bracing doesn't work, makes it all the more likely that my daughter's curve being stopped was an intervention from above....seeing as I don't believe in "magick".

[Lorraine 1966]

Jenny I am so very sorry that the brace has not worked for your son. and now he has to have surgery. Bless his little heart at 6 years of age and to have gone through all that he has with the brace on too.

I think we do everything we possible can for our children, we try so hard to make the right choices and when they dont work out we are not guilty of anything but loving them too much. I will keep your family in my thoughts.



Lorraine.

[Ballet Mom]

jenny,

By the way, I thought I'd give you this link also since Dr. Skaggs is in the forefront of using all the VEPTRs and growing rods, etc. Hopefully there is someone qualified around your area with these techniques.

http://www.childrenshospitalla.org/s...JsG/b.3905357/

[betty14]

Hello:

I've just read this interesting thread, and would just like to add my opinion that "watching and waiting" is simply a silly thing to do. Or, not do, as it happens.

Some of my thoughts:

A while back, someone mentioned "intelligence" vs. "knowledge". Personally, I find in my own clinical practice that the patients that do the best may not have knowledge (at the start), but they have sufficient intelligence to want to be proactive and learn what they need to do in order to achieve the results they want.

People on both sides of an issue must be cautioned not to make assumptions, or ignore or downplay information to help bolster their own bias. (I am referring to all posters, including Pooka1, who seems to think she has one of the only clear, unbiased, scientific heads on the NSF!). It is important to recognize one's biases, in order to reduce their impact. See my bias below in my signature.

I have had many dealings with various surgeons. In fact, they do have widely divergent views on certain things, from whether and when to brace after ACL surgery, to how many weeks to limit certain activities, to whether or not they even recommend any rehab post surgery..... and yes, some surgeons actually think that other surgeons are incompetent, even if they have one lone case ten years ago to base their opinion on! Some surgeons keep current of literature, and some don't. Some are old fashioned, and others are forward thinking. Etc....

Cheers all, B.

[Pooka1]

Hello:

I've just read this interesting thread, and would just like to add my opinion that "watching and waiting" is simply a silly thing to do. Or, not do, as it happens.

The only legitimate reason for thinking watching/waiting is silly is if you have evidence that it is less effective that some "proactive" "treatment."

The world is still waiting on that evidence. Schroth alone has been at it for over 90 years.

People on both sides of an issue must be cautioned not to make assumptions, or ignore or downplay information to help bolster their own bias. (I am referring to all posters, including Pooka1, who seems to think she has one of the only clear, unbiased, scientific heads on the NSF!). It is important to recognize one's biases, in order to reduce their impact. See my bias below in my signature.

There is having an open mind an being skeptical. That's what I shoot for. If you don't think so then I haven't been clear or you are simply projecting. Skepticism combined with an open mind is the ONLY way forward if you want to know anything that is real.

Science is a way of knowing. Being "proactive" absent evidence is a way of pretending to know.

There is evidence and there is wishful thinking.

[Pooka1]

A while back, someone mentioned "intelligence" vs. "knowledge".

It's very important to see this distinction which I think you do.

You certainly have to be intelligent to get an engineering degree let's say. But because engineering curricula don't expose the students to facts about evolutionary biology and historical geology, you see a disturbingly high percentage of engineers who don't understand why evolution is a fact or don't understand why the earth is a few billion years old. And because lay folks incorrectly lump engineers in with research scientists, this would confuse them and they might even cite this as some knock down argue against the facts of evolution and deep time.

There is no starker example of the difference between intelligence and knowledge than that.

Collins, because he is extremely intelligent and has knowledge, of course accepts the fact of evolution over deep time. He never would have been nominated to run NIH had he not. The hew and cry would have been deafening and his nomination would have been withdrawn within a few microseconds had he not accepted those scientific facts. Actually, Obama would never nominate a young earth creationist to head a science agency (or any agency I hope).

Life in the real world amidst reality. Now THAT is a breath of fresh air.

[nancystreasures]

Our son was in 3 TLSO body braces over 3+ years - each time the brace did nothing to stop or even slow down the progression of his curve - we were trying to buy him time for upper torso growth - just to mention he is special needs (so adjustable grow rods are not an option) & he hated that brace more than he could ever express
his first brace was when he was at 45 degrees /2nd 52 /3rd 78
he is now 10+ yrs old & his curve is at 96 degrees in Aug 09 (82 degrees in March 09)

I think every case is individual & unique - we can easily sit & judge how a person/Doctor/therapist etc may handle a case/situation but we don't always get all the right facts (as parents we go in upset & don't always understand things to the fullest & don't think of questions until after we leave & have time for the info/diagnosis to settle in) - as betty14 stated we should not try to waver another into our own bias way of thinking because of what happened in our situation, again each is unique & it is the scoliosis patient we have to think about - their safety, comfort & future
be good & be happy --- Nancy