Re: Comforting Article/Rick!

[Guest guest]

Rick,

Recently the orthotics and prosthetics industry conducted huge work

against establishing clinical standards of practice in the orthotic

treatment of plagiocephaly. I don't want to bore you with the

details, but the news is chronicled in the links/aaop orthotics

industry news folder, I think, if you are interested

I am extremely eager to get a look at the Plagiocephaly Supplement

to the JPO just published to share with the group somehow. It is an

abbreviated version of work and research that came out of the

industry's consensus conference this past spring. I don't know if

you have access to it, or even if you have time, but could you let

me know if you are able to read it? I don't have my email account

set up yet here at the new house, so just post to the group if you

wouldn't mind.

Journal of Prosthetics & Orthotics (JPO), October 2004, Volume 16,

Number 4.

This Supplement publication is a compilation of the current research

available and presentations done by the panel of experts at the

consensus conference in April.

My only other option is to send away for a personal copy of the

supplement for a fee of $46. I may end up having to do that!

Thanks for any help,

Christie (Mom to Repo'd Remy)

>

> >

> > From: " redlocks2003 " <redlocks@i...>

> > Date: 2004/12/29 Wed PM 02:56:27 EST

> > Plagiocephaly

> > Subject: Re: Comforting Article

> > It is certainly encouraging that improvement in rounding >and

> >symmetry was noted over time in this study.

>

> Yes, but not being an expert in this area, I have no way of

knowing what these numbers actually " look like " on a diagram in

terms of amount of head distortion. One thing that was interesting

was that the maximum (in addition to the means) did drop at the 2

year mark. So that means that even the " worst " amount of distortion

improved somewhat by the 2 year mark. But what this would acutually

look like on a diagram I have no idea...

>

>

> >My own opinion about this study is that the measurement

>threshholds

> >for what is considered to be an actual plagiocephaly or

> >brachycephaly case is much, much too high, resulting in an

>absurdly

> >low 3% occurrence recorded at the 2 years of age mark. With >more

> >appropriate threshholds, the results would have appeared

> >differently.

>

> I'm 99% sure there was a table in there that addressed this very

issue. Actually, I'm positive because I remember looking at it very

closely. They had a table that showed how the results would look

using a variety of different thresholds. I think the " worst " one

was something like 12% at 2 year follow-up, but the number of

earlier cases also seemed unrealistically high using that number

(something like 25% or 30% if I recall).

>

> > Reading between the lines of our communique, my

> >impression was that they really don't care for helmets and

>bands.

> >He basically said, " We don't do helmets and bands, we do >this

> >instead " in so many words.

>

> Interesting.

>

> >Although approved of by their ethics commitee, I was >disturbed to

> >read that NONE of the parents was given any advice at all >about

> >their child's headshape. This is the equivalent of saying >DO

> >NOTHING about it, including any general repositioning.

>

> Yeah, pretty amazing.

>

> > I don't know

> >if you saw the measurements charts, but some of these babies >had

> >really high asymmetry or cephalic ratio measurements during >the

> >study.

>

> Unfortunately, I'm ignorant about how these numbers translate into

what a kid would like visually.

>

>

>

> >>Although helmet treatment is available in New Zealand, no case

was

> considered severe enough to be referred for such treatment by their

> health professional.<<

>

> >When you think about the word " concerned, " what exactly does >that

> >mean? If you are a parent, and you do not know of any >treatment

at

> >all, whether it be repo or a band, for your babies' >misshapen

head,

> >than what exactly are you going to insist be done about it? >Are

you

> >going to stay officially, " concerned? "

>

> I don't know. If the norm there is not to band, that may

influence it. Of course the other possibility is that some

kids " looked bad " to their parents and their heads either improved,

got covered with hair, or their parents " got used to it. " I really

wish the article broke down cases into mild, moderate, and severe,

and then talked about what happened with each group at the 2 year

mark. Is it possible that some of the " mild " kids were still " mild "

at 2 years while some of the " severe " kids no longer had the

condition? Or, did the final 3% consist entirely of kids who were

the most severe to begin with? I'd really like to know that info,

but I couldn't find it.

>

>

>

> >More studies are

> >due out soon on this subject, including the study out of

>Childrens

> >in Atlanta (CHOA) which is a huge one that compares natural

>rounding

> >to repositioning to banding.

>

> Is there a way to get any preliminary data from them on thier

findings so far?

>

> Would you please post if you >come

> >across anything else? It's very helpful to have group >members in

> >the medical community that can get access to these documents!

>

>

> Sure. If anyone is interested in a specific article that they

come across, I'd be happy to look it up. I have access to the full

text for most of these articles on our network, and for the ones

that I don't, our library has most of the major medical journals in

print.