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mariaf
05-06-2015, 03:13 PM
I wasn't sure where to post this, but someone suggested adding a thread in the surgical section, so hear it is. The Pediatric Spine Foundation is a newly-formed non-profit foundation that will focus education and research with regard mostly to fusionless techniques (tethering, etc.). Here is a link to the Pediatric Spine Foundation's website:

http://pediatricspinefoundation.org/

In addition to research and education, PSF hopes to raise awareness about fusionless alternatives for patients requiring surgery. In fact, there are already strides being made to use tethering (VBT) on more skeletally mature patients, and eventually perhaps even on adults.

There's too much for me to share here, so I encourage everyone to check out the website!!

titaniumed
05-06-2015, 10:03 PM
Maria

All good stuff.....

With the kids, you have to catch them early.......What is going on with the school screening these days? Do some schools do it and some donít? I have no idea....

Is it worth just having your kid x-rayed at age 10? In my case, it would have caught it I suppose.....

Ed

titaniumed
05-06-2015, 10:14 PM
With an idiopathic case starting at age 9, its going to start small, how do you spot the mildest of curves? An Adams test is fine but if there is mild or no rotation this could be difficult.....

If one suspects and does go visit a doctor who is not up to snuff in scoliosis, it could be missed. I say this because it happened to me.

As a parent, should you insist on an x-ray?

Ed

Susie*Bee
05-07-2015, 08:03 AM
I know it's no longer a law in Indiana, ever since the American Academy of Pediatrics said it was not necessary, based on bracing studies that came out several years ago. What a terrible decision... Up until that time all school children in grades 5 and 8(?) were checked with the Adam's forward bending test which is certainly better than nothing. My understanding is that up to a 10% curvature is considered natural/ok. We run the gamut of socio-economic classes here. Some of our children probably never darken the doors of a doctor's office.

mariaf
05-07-2015, 08:19 AM
I believe the laws vary from state to state, but I think it's crazy not to, at the very least, test these kids in school using the Adam's forward bending test. Maybe in cases where scoliosis runs in the family, an x-ray at some point just to check might be a good idea. On the one hand, you don't want to overexpose kids to radiation, but on the other hand, if there is any indication the child might be prone to scoliosis, it's probably a good idea to consider an x-ray.

One of the good things about tethering (even over VBS) is that so far, even on curves in the 40's and above, it's been successful. That said, there is no question that early detection is so very, very important. If you can prevent a curve from getting to that point, you most definitely want to do so, and catch the curve when it is as small as possible.

Not to get too political, but with all the money that is spent in this country on a variety of things - both here and abroad - I can only guess that it is a financial consideration that has caused some states to stop providing the Adam's bending test to our kids in school. Unbelievable.

flerc
05-07-2015, 01:06 PM
In fact, there are already strides being made to use tethering (VBT) on more skeletally mature patients, and eventually perhaps even on adults.



There are a lot of adults determined to having a fusion surgery but not because a big pain, complications or progression, but as prevention. They must be aware about this. Vertebral fusion is a very much invasive and irreversible surgery, avoiding flexibility in the fixed zone, with all the limitations/complications implicated.
As I understand, nothing of this may be said about Vbt, so they should to consider this great possibility!

Susie*Bee
05-07-2015, 02:10 PM
Maria - I am sure money has something to do with it, but mostly the fact that the AAP said it was not necessary. Would you, then, put time and money into something if a trusted entity said that? Our legislature did not. I tried to locate one of their articles but most you have to have a subscription for. Here is a precursor you didn't... http://pediatrics.aappublications.org/content/121/1/9.abstract

Yes, it is very disappointing. I am sure it may have been difficult logistically in the big districts where schools may share nurses, but here at my small school, it was just a matter of a couple of days for our school nurse to check the kids when it was swim class time.

Again, we have many "dirt poor" children or parents who have no idea (or would care or understand). Those children would go unseen. But they may have been helped if the school nurse would have "caught" the problem and pointed it out. Clothes hide too much.

mariaf
05-07-2015, 03:29 PM
Thanks, Susie.

I, too, am shaking my head at how anyone could think something as simple, quick and non-invasive as a bending test is not necessary. They have to realize that it is going to help at least SOME percentage of children, no matter how small that percentage might be. That's why I assumed they might have decided the cost didn't outweigh what they considered a very small benefit.

However, if it is someone's own child with a curve that is either caught in time or progresses rapidly, then it is a HUGE benefit.

Pooka1
05-07-2015, 04:35 PM
I assumed the reason they stopped was because there was no good conservative treatment. So at best you would be finding a few surgical cases. Now with stapling and tethering, that is reason enough to institute it everywhere. Those procedures are going to allow kids to get through life without being fused in my opinion. I wish my girls presented now and not several years ago.

titaniumed
05-08-2015, 12:50 AM
Thanks for the answers guys....

There are a few different ways at looking at this.....

If you substitute the word scoliosis with the word cancer, it changes things.....

If my kid had cancer and I elected not to do a cancer screening or monitor, how would that sound? Does it matter if one method has been proven or not? They donít have a cure for cancer so I wont do anything.....Isnít this neglect? Child endangerment?

Is this the reasoning why some are against school scoliosis screening? Lack of proof?

I just trying to figure out the logic against school screening....if it identifies a few unfortunate patients, isnít it worth it? What is living with scoliosis pain for a lifetime worth? How many levels of fusion will one single x-ray save?

Doing nothing is not something I agree with, its something that was done years ago, and its old school thought. Many of the studies are old studies.....

Ed

Pooka1
05-08-2015, 06:53 AM
Hey Ti Ed,

We can cure about 75% percent of childhood leukemias. Treatment works most of the time. That's why it is important to look for these cancers... the outcome can be changed.

Until VBS and tethering, it was not clear the outcome could be changed by conservative treatments that would be applied in cases that were caught during screening. I believe I read that was the explicit reason for not screening. You can't really argue with that then and I would say not even now w.r.t. bracing despite the recent paper.

Yes a few surgical kids would definitely benefit from being caught earlier but the vast majority of cases aren't surgical. The TL cases for sure might benefit from earlier detection in terms of saving levels but now were are talking a vanishingly small number I think.

On the other hand, it is so quick that every PE teacher should do it every year in my opinion.

Susie*Bee
05-08-2015, 07:02 AM
As I see it, the problem is getting the American Academy of Pediatrics to retract their findings based on the new techniques: growing rods and titanium ribs, VEPTR, VBS, and VBT, etc. (There may be some duplication there as I don't understand it all...) Until that happens, pediatricians are living in the dark ages, much as many of the regular and even specialist doctors do who call our instrumentation "Harrington rods" and assume only adolescents have scoliosis/surgery. (How many times have I heard that???) "What? You are too old to have just had scoliosis surgery!" Oh, I see you have Harrington rods..." They need to revisit these newer techniques and come to a new recommendation. Period.

Ahhh - I see I was writing at the same time as Sharon...

mariaf
05-08-2015, 08:03 AM
All good points, folks.

Probably the thing I agree most of all with is that pediatricians are clueless when it comes to scoliosis. I have educated more than a few in my time and I'm just a lay person (albeit, parent of a kid w/scoliosis).

The first pediatrician I will put in the 'clueless' category was the one David was seeing initially. I had to insist on an x-ray. I think she just could not wrap her head around the fact that a child so young could possibly have scoliosis even though it was apparent to the naked eye (mine at least) that something was off.

Since then I can't tell you how many pediatricians look at me like I have three heads when I tell them David had VBS or mention any advances in pediatric scoliosis care. I have yet to meet ONE pediatrician who knows even a fifth of what most of us do about the condition. Scoliosis is clearly not something they generally keep up on, not even minimally.

Pediatricians should NOT be setting the standards for whether or not kids are screened in school. Whoever is listening to them is nuts.

titaniumed
05-09-2015, 09:56 AM
Its going to be hard for me to be objective when talking about screening for scoliosis because I wasn’t caught early....an emotional thing for me, deleting multiple posts changing thoughts. Even if they couldn’t do anything at all, it still matters....... There is a huge difference on how somebody might feel about any particular disease, its completely different when it happens to you. Almost like the ice bucket thing with ALS, since I lost my father to this disease, I have trouble commenting on the subject due to my own emotional train wreck on the matter.

Things do get better everyday......now that we have stapling and tethering with positive results and increased knowledge amongst “some” pediatricians and doctors, the decisions on school screening should be different. Since it is a quick and simple thing to look, it shouldn’t be a hard decision, or financially driven decision.

Years ago, there were only a handful of scoliosis specialists, and no internet. If you didn’t have the right connections, you were flying blind....your decisions on treatment were actually the best you could do given the circumstances.....

Its great to have this foundation of scoliosis and deformity experts listed for those parents that might have a scoli kid. It actually brings tears to my eyes to see this happening.

Doing nothing is never an option.......All scoli’s need that evaluation from an expert before deciding what to do.....

If there is any doubt about shoulder heights, symmetry, growth, rib hump’s, lumbar humps, walking gates, pain complaints etc, please e-mail, post here, or make that call.

Ed

Susie*Bee
05-09-2015, 10:56 AM
I fell through the cracks too, Ed. I know what you mean. It's a total injustice by the pediatricians to the children and their parents. They should have the ability to KNOW the condition is present and then make a decision of whether to do something or not.

ED - YOUR MESSAGE BOX IS FULL!

jackieg412
05-09-2015, 11:46 AM
I too fell through the cracks. I insist my grand children get screened. I remind their parents all of the time. My oldest granddaughter has a 14degree curve and is ok. She is 18.
I found out I had scoliosis when they had to give me a spinal for my oldest daughter birth. When I asked what was the impact of that, I was told that it meant I would have more backache than average person. I never had it followed because of that casual comment. Then all h--- broke loose.

titaniumed
05-09-2015, 03:52 PM
ED - YOUR MESSAGE BOX IS FULL!

Hmmm.......Bold is funny. (smiley face)

Yup. I clean it out, and I get hit.......I donít pay much attention to the PM system since you can only type a short paragraph before it balks.

Its clear now....

There is always my e-mail.....
titaniumed@hotmail.com

Ed

mariaf
05-11-2015, 08:18 AM
......now that we have stapling and tethering with positive results and increased knowledge amongst ďsomeĒ pediatricians and doctors, the decisions on school screening should be different. Since it is a quick and simple thing to look, it shouldnít be a hard decision, or financially driven decision.

Years ago, there were only a handful of scoliosis specialists, and no internet. If you didnít have the right connections, you were flying blind....your decisions on treatment were actually the best you could do given the circumstances.....

Its great to have this foundation of scoliosis and deformity experts listed for those parents that might have a scoli kid. It actually brings tears to my eyes to see this happening.

Great post, Ed. And I see you emphasized the word "some" which cannot be stressed enough. There are still too many doctors (not just pediatricians, but sadly orthos as well) who don't know enough about VBS/VBT to even bring it up.

Hence the need for the Pediatric Spine Foundation, whose main missions are research and EDUCATION!

Susie*Bee
05-11-2015, 08:45 AM
So what we need is the SRS or someone to push the AAP to change their position on school screening. SRS meets Sept. 30 - Oct. 2 in Minneapolis. But I doubt that they would be able to mention it.