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Ballet Mom
07-20-2010, 03:00 PM
Here's a link to a series of three videos starring Min Mehta. I think it is a phenomenal series of videos. Well-worth anyone watching who deals with scoliosis.

I re-watched the videos and took the liberty of writing down the final words of Miss Mehta in the third video. Fascinating.

http://www.youtube.com/user/AmilCastingFrame#p/a/u/0/9fpOsKFBrFo

Min Mehta:

In the very early stages, scoliosis can be cured by the child's growth if we take appropriate early steps to do that.

All of us are now conditioned to believing that once a child has a scoliosis, it's there forever. So we have to change our thinking and entertain another idea, which is that scoliosis increases with growth because we allow it to.

Interviewer:

Looking now at your 88 children who've grown straight, how does that make you feel?

Min Mehta:

Good. Happy. And helpful that they can persuade others who treat spinal deformities to look again at the possibility of curing scoliosis...NOT just in infants, but also in adolescence.


:)

hdugger
07-20-2010, 03:11 PM
There are patients of Min Mehta on the Scoliosis Support Forum who regard her as a hero.

I've always wondered why casting does not seem to be practiced in the US. Is it an insurance issue?

Ballet Mom
07-20-2010, 03:21 PM
I really don't know hdugger, other than it seems like our medical profession is trained to be very aggressive. I know I would love to be seen by doctors in the U.S. if my life was in danger...not so sure I'm impressed with American doctors who prescribe a 112 pound girl, the same dosage of high risk, high side-effect medicine as men that are bigger than 200 pounds, in order to reduce the potential of recurring acne. Ridiculous in my book.

Anyhow, I'm trying to do my very little part for kids with scoliosis in the only way I can. :-)

tonibunny
07-20-2010, 04:31 PM
It is surprising that EDF casting for infants isn't more widely available in the US, and indeed elsewhere outside the UK. I've known of children who have flown over from Australia to be cast at the main hospital here (The RNOH in Stanmore, where Min Mehta was based). The impression I have got over the years is that US doctors tend to feel that casting an infant is "barbaric", and parents often struggle with the thought of putting their child into a cast anyway.

I was diagnosed at 6 months old and grew up wearing casts (from the age of about 4 I also wore Milwaukee braces during the summer months), treated by a colleague of Ms Mehta's at the RNOH - I met her many times. I believe that my curves weren't corrected because I wore non-EDF Minerva casts for the first couple of years, and after that my bones weren't soft enough to be "moulded" straight by the casts; also I started out with much larger curves than Ms Mehta initially worked with, and was diagnosed a couple of years before she began to concentrate her work in this direction. Casting really isn't barbaric; infants adapt very quickly and grow up not really knowing any different. It was an annoyance for me rather than something that made my life miserable. I think it must be much harder for a teenager to face bracing.

Min Mehta absolutely deserves the respect she is accorded - she has saved countless children from a lifetime of bracing, surgery, and fused spines. Also, two ladies that have done an enormous amount to promote the fact that EDF casting is an option for infants with scoliosis are Heather Hyatt and Celia Vogel.

Ballet Mom
07-20-2010, 04:40 PM
Hi tonibunny,

Thanks for your input. I realize that infantile scoliosis is also much rarer here in the U.S. than in England, for some strange reason. It may just be that there are so few cases here, that it doesn't get the attention that it would normally get.

I'm thrilled Mehta has been able to cure so many kids. I think she's wonderful. :)

Oh yes, and kudos to the two ladies who are providing attention to the method. I actually don't spend time in infantile forums, so I don't know what's being done!

flerc
07-20-2010, 08:05 PM
EDF technique http://www.scoliosis.org/forum/showthread.php?p=99905 is used in some countries in adolescents and not always with low Riser.
I think it is the most obvious and useful way to use a brace.

mariaf
07-20-2010, 08:16 PM
I'm so glad to see casting and Min Mehta mentioned here. I've often referred folks over to www.infantilescoliosis.org. This site is run by the aforementioned Heather Hyatt :)

Heather single-handedly founded ISOP (Infantile Scoliosis Outreach Project) and continues to run it today while at the same time caring for her daughter and being a working mom. She has helped countless families and has been instrumental in bringing Dr. Mehta here in the past to train doctors in the U.S. in this method and continues to work tirelessly to make sure more and more doctors in the United States are aware of, and are trained in, this method. And it's working - the number of doctors is growing every day.

Heather is truly a hero!!!

rohrer01
07-20-2010, 10:50 PM
Amazing video! I wish there were more people like this woman. This is truly incredible. I would be interested in the contraindications for casting, although this certainly doesn't apply to me. But I do have a grandchild that I watch diligently and thankfully he's fine so far. She mentioned that this treatment could be used on adolescents. I'm wondering up to what point it might be effective.

flerc
07-21-2010, 12:06 AM
Who knows if EDF (stretch and keep the stretching) cannot works in adults.. probably not alone, but combined with other methods/therapies/products/habits.. all of them in the same direction.. it seems a reasonable possibility, at least for me.

tonibunny
07-21-2010, 05:41 AM
Who knows, Flerc? Although, I wore the EDF casts from the age of 2 until I was 10 and they didn't correct my scoliosis at all - though I think they did a lot to prevent it from progressing too fast. Back in the 1970s and early 1980s plenty of kids were put into these casts at Stanmore; it was a standard treatment. So, you'd think that if it was possible for an EDF cast to correct scoliosis beyond infancy then they would have seen it happen and would have documented it, and would still be doing it! It's rare for Stanmore to cast older children now though. They tend to have custom-made TLSO braces and then growth rod surgery if bracing doesn't hold the curves.

As I understand it, EDF casts can work for infants because they still have very soft bones which can be "moulded" straight using casts during the infantile growth spurts.

flerc
07-21-2010, 08:45 AM
I suppose that all we have some belief about scoliosis.
My beliefs refers about non surgical treatments could also be really effectives in adults.
I think that there are great treatments, but I think that none can be really effective without combining with others.
When I talk about EDF I refer only to the concept about stretch and keep the stretching.
I believe that it could be performed with other kind of braces, not only cast and rigid braces in a very flexible spine. I think that a dynamic brace, reducing the risk of muscular weakness would be probably the best, but Spinecor people, at least in my experience, refuse to say if it could be used to that purpose.
I really think that EDF was always used in the same way than 40 years ago. The only difference as I know is that Cotrel's Machine is replaced in some countries by other modern solutions, making less traumatic the treatment.
So I think that other variations could be attempted some day and combined with great therapies, which I believe are very limited, without the possibility of keep the stretching.

rohrer01
07-21-2010, 11:25 AM
I think the problem with attempting EDF in adults, if it showed efficacy, would be the pain thresh-hold. Adult spines are so stiff as compared to an infants cartilaginous bones. I would think that the cast would have to be worn for many, many years, as the body replaces itself every so often. Babies and young children replace themselves at a much faster rate because they are growing rapidly. I don't know if an adult could wear one long enough to reach the desired effect. I know that when I do stretches that oppose my lower curve, I can only go so far before the pain becomes intense. With surgery, they just do it all at once, the person deals with the tremendous pain, and then it gets better. I personally am not in to prolonged pain. Ironic, since I've been in pain since I was 12 and I'm now in my 40's. I would also worry about skin breakdown more in an adult, since we don't heal as rapidly as babies and small children.

Flerc, if you are considering this method for your daughter, I wouldn't consider it too long. I would find a practitioner as soon as possible and get it done. Each day you wait, she matures more and more.

Ballet Mom
07-21-2010, 12:36 PM
I'm so glad to see casting and Min Mehta mentioned here. I've often referred folks over to www.infantilescoliosis.org. This site is run by the aforementioned Heather Hyatt :)

Heather single-handedly founded ISOP (Infantile Scoliosis Outreach Project) and continues to run it today while at the same time caring for her daughter and being a working mom. She has helped countless families and has been instrumental in bringing Dr. Mehta here in the past to train doctors in the U.S. in this method and continues to work tirelessly to make sure more and more doctors in the United States are aware of, and are trained in, this method. And it's working - the number of doctors is growing every day.

Heather is truly a hero!!!

I had read some of Celia Vogel's interesting information in the archives on this site which piqued my interest in Min Mehta. In researching Mehta on the internet, I came across those videos which I thought were fabulous and beneficial and should be posted on this site.

I have never heard of Heather, but I'm glad someone has been working to promote Mehta's work here in the states. Was Heather's daughter cured of scoliosis using casting? I'm assuming that must be how Heather got involved.

mariaf
07-21-2010, 07:19 PM
Hi Ballet Mom,

Heather learned about the Mehta casting method when it was too late for her daughter to benefit from it. Liv's curve had become so severe (and I'm not sure how old she was at the time) that she had to endure everything from halo traction, to later either a growing rod or VEPTR. I know she has had several surgeries.

Amazingly, even though Liv couldn't benefit from it - or maybe because of Liv's experience, Heather vowed to find a better option for kids diagnosed with infantile scoliosis. She founded the Infantile Scoliosis Outreach Project - and later a support forum named C.A.S.T. (Casting as an Alternative Scoliosis Treatment) which can be accessed by going to www.infantilescoliosis.org and clicking on "links".

Heather is a truly amazing woman who raises money through ISOP to train more and more doctors in this technique so that other kids can be spared the more invasive methods, such as those her own daughter endured.

Pooka1
07-21-2010, 08:14 PM
Celia is having an Emily Litella moment on her group... she has concluded, in several consecutive posts, that the moderator removed fireflymd's thread at the behest of Maria and I. Celia has further concluded that the reason fireflymd started a new thread is because she won't be silenced.

Since Celia is reading along, I am sending out this note to help her...

Fireflymd deleted the thread. I know it goes against every notion you hold to be true but I am telling you that is a fact.

It happened for a reason. There is a reason for everything.

Deep breaths always.

mariaf
07-21-2010, 09:42 PM
Hi Sharon,

Because I like and respect you, I will tell you to save yourself the aggravation. Celia is in a world of her own and nothing you - or any other reasonable person says - will reach her. As you like to say, full stop :)

I know of at least one other site that she was banned from due to her antics.

Of course Firefly deleted the posts. It seems that she wanted to tell her side - but as soon as anyone had anything to say that she didn't like, the thread came down.

Very childish IMHO.

Apparently, if someone starts a thread here, they have the ability to delete the entire thread, including any responses they receive, which doesn't seem right when you think about it.

It's OK though - I believe most folks see these types of tactics for what they are. Your time and energy should be better spent elsewhere - not on this nonsense.

Best,

Pooka1
07-22-2010, 05:39 AM
Maria,

Thank you for the advice. I just think it is sad. Celia is not the only person desperately trying to get her arms around a complex technical topic. She and others have been thrown in the deep end with no means of saving themselves. The sad fact and hard truth here is that saving oneself is very very hard to do without even basic science concepts not to mention the particular facts as they become known.

If most results published by experts are false, then it might be reasonable to conclude that at least that much of what us unwashed masses write is false. Skepticism is always warranted of both experts and especially lay folks until the thing is well vetted.

All we can do is press ahead with the most scientific bent possible. Personal experience is routinely misinterpreted and so is only so good. Science is what we do to hopefully avoid lying to ourselves. It's the only game in town. Breathless hysterics, as we have seen on some topics for a few players, will get a person nowhere.

Scoliosis is a cruel fact of life.

Pooka1
07-22-2010, 05:54 AM
Apparently, if someone starts a thread here, they have the ability to delete the entire thread, including any responses they receive, which doesn't seem right when you think about it.

I must say I was surprised a person can do this.

I think now that folks are aware of this, we might see more disappearing threads going forward.

mariaf
07-22-2010, 07:50 AM
I'm afraid that we might.

And that is unfortunate because folks should stand by their posts - even if others reply and do not necesarily have the same views or experiences. There have been times that I may have started with a particular view about something, then heard 'opposing' (for lack of a better word) views and rethought my position somewhat. Isn't that what forums like this are for? To go back and forth with others - some of whom may agree and some of whom may not. Otherwise it's a bit like playing catch with yourself.

Ballet Mom
07-22-2010, 11:40 AM
Hi Ballet Mom,

Heather learned about the Mehta casting method when it was too late for her daughter to benefit from it. Liv's curve had become so severe (and I'm not sure how old she was at the time) that she had to endure everything from halo traction, to later either a growing rod or VEPTR. I know she has had several surgeries.

Amazingly, even though Liv couldn't benefit from it - or maybe because of Liv's experience, Heather vowed to find a better option for kids diagnosed with infantile scoliosis. She founded the Infantile Scoliosis Outreach Project - and later a support forum named C.A.S.T. (Casting as an Alternative Scoliosis Treatment) which can be accessed by going to www.infantilescoliosis.org and clicking on "links".

Heather is a truly amazing woman who raises money through ISOP to train more and more doctors in this technique so that other kids can be spared the more invasive methods, such as those her own daughter endured.


I am so sorry to hear that Liv couldn't benefit from Mehta's casting. :( Darn. God bless Heather and Liv and her big heart for helping others to benefit.

Ballet Mom
07-22-2010, 11:42 AM
Celia is having an Emily Litella moment on her group... she has concluded, in several consecutive posts, that the moderator removed fireflymd's thread at the behest of Maria and I. Celia has further concluded that the reason fireflymd started a new thread is because she won't be silenced.

Since Celia is reading along, I am sending out this note to help her...

Fireflymd deleted the thread. I know it goes against every notion you hold to be true but I am telling you that is a fact.

It happened for a reason. There is a reason for everything.

Deep breaths always.

Exactly how does this subject belong on this thread? Really. Get a grip on yourself and perhaps you should consider deleting some of your own posts. Every single thread gets buried by your pompous lectures.

tonibunny
07-22-2010, 12:41 PM
It is such an utter shame that Heather's daughter couldn't be helped by this. It makes me realise how lucky I have been; Olivia started off with a 39 degree curve but didn't have appropriate treatment at once, whilst my double curve was 62/40 degrees when I was first diagnosed at around the same age and I was immediately referred to Stanmore and put into casts. My curves were held in the high 60s by the casts and Milwaukee braces until I was 10, when they suddenly took off and were near 80 degrees when I had surgery (I had two weeks of halo traction before the fusion). Poor Olivia ended up with a curve of nearly 100 degrees before the age of 3 because casting was considered "barbaric" by doctors!!!

Casting has always been used for IS in the UK. I was very shocked when I first learnt that it wasn't a treatment that was available everywhere.

Progressive infantile scoliosis is very rare, but there are still plenty of kids out there who need access to timely treatment. Everyone who promotes casting and early intervention for these children is to be applauded - Heather and Celia both deserve kudos for this, whatever their views on other treatments.

Pooka1
07-22-2010, 01:40 PM
I'm afraid that we might.

And that is unfortunate because folks should stand by their posts - even if others reply and do not necesarily have the same views or experiences. There have been times that I may have started with a particular view about something, then heard 'opposing' (for lack of a better word) views and rethought my position somewhat. Isn't that what forums like this are for? To go back and forth with others - some of whom may agree and some of whom may not. Otherwise it's a bit like playing catch with yourself.

I argee. If one person is confused then chances are others will be also. Threads like that are helpful.

People always want to control what others write because they can't control what they themselves read.

Counterfactual, confused threads that get edified are better than no thread.

I wonder if Linda knew that OPs can delete the responses of others. That seems wrong. Maybe that can be disabled so the control of what people write is back in the hands of the people who write the posts.

Pooka1
07-22-2010, 01:42 PM
Casting has always been used for IS in the UK. I was very shocked when I first learnt that it wasn't a treatment that was available everywhere.

Is anyone researching why IIS is more prevalent in Europe (or is it just the UK?) than it is in other areas of the world?

Pooka1
07-22-2010, 01:49 PM
Celia,

The second thread with response from others was also pulled by fireflymd (not the moderator and not at the behest of anyone).

I know you will be relieved that a third thread has been started and hopefully the OP will not pull that one. All these recovery testimonials are very valuable to the next parents to come along.

Why don't you resume posting here? I saw you mention that I hurt your feelings. I apologize for that... it was never my intention. Criticizing ideas is NOT criticizing people. I think you have put lots of time and effort into trying to help.

sharon

tonibunny
07-22-2010, 01:51 PM
I've no idea I'm afraid Sharon :( I *think* I heard somewhere that even in the UK it's more prevalent in those with Celtic (Irish/Welsh) or Nordic ancestry, which is very interesting. In my own experience, the children I know who have (or had) Infantile Scoliosis are all noticeably pale skinned. I'll do some more digging, it's fascinating!

Pooka1
07-22-2010, 01:54 PM
I've no idea I'm afraid Sharon :( I *think* I heard somewhere that even in the UK it's more prevalent in those with Celtic (Irish/Welsh) or Nordic ancestry, which is very interesting. In my own experience, the children I know who have (or had) Infantile Scoliosis are all noticeably pale skinned. I'll do some more digging, it's fascinating!

Oh wow. Then maybe it is also more prevalent in Scandanavia than in other places.

Tiny babies getting huge curves is simply not fair. Not that the universe is fair but it's just so demoralizing.

skevimc
07-22-2010, 02:06 PM
I've no idea I'm afraid Sharon :( I *think* I heard somewhere that even in the UK it's more prevalent in those with Celtic (Irish/Welsh) or Nordic ancestry, which is very interesting. In my own experience, the children I know who have (or had) Infantile Scoliosis are all noticeably pale skinned. I'll do some more digging, it's fascinating!


Oh wow. Then maybe it is also more prevalent in Scandanavia than in other places.

Tiny babies getting huge curves is simply not fair. Not that the universe is fair but it's just so demoralizing.

There was a study a while back looking at prevalence of scoliosis correlated with global latitude. The more northern or southern , i.e. polar, the latitude the more prevalence. As I recall it was presented mostly as a "You won't believe the crazy thing we just found" type of result. (Or at least that's how I took it). They discussed that one simple explanation is that countries closer to the equator are poorer nations and not likely to have accurate reporting for something like scoliosis. So....

But it's interesting about the higher incidence of IIS in the UK versus the US. You'd think those kinds of differences, if they are not by chance, have to hold some type of answer to etiology.

hdugger
07-22-2010, 02:27 PM
I have a hazy memory that Martha Hawes attributed it to campaigns to have babies lie on their stomach/back/side. When parents were encouraged to have their infants lie on their stomach, the incidence went up, and when they were encouraged to have their infants lie on their back, the incidence went down.

tonibunny
07-22-2010, 02:42 PM
Interesting stuff, Hdugger. If this is the case then I'd expect the incidence to have gone down as people in the UK are now advised to have their babies sleeping on their backs, because of worries about SIDS. I will try to find out if this is true!

Pooka1
07-22-2010, 03:02 PM
Well if Hawes is correct then I'm going to revise my idea of how interdisciplinary the field of Plant Pathology is. :)

tonibunny
07-22-2010, 03:20 PM
It looks like Martha Hawes picked this up from existing literature:

"Although debate continues as to whether the deformity is due to.....positioning in the cot (Mau 1968), prone lying does appear to have an inhibitory effect; it must be insisted upon, particularly for the hypotonic infant (McMaster 1983)"

-- R.A. Dickson, "Conservative Treatment for Idiopathic Scoliosis", The Journal of Joint and Bone Surgery Vol 67-B, No. 2 March 1985.


Btw I know Prof Dickson, he's still a scoliosis surgeon and is Head of the Departmnt of Orthopaedic and Trauma Surgery at the university in Leeds here in the UK :)