Min Mehta's Own Words

[mariaf]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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!