More thoughts about UK treatment...and the design of the Cranio helmet

[Guest guest]

Hi there

I really agree with Jo (Cam's mum) 100% with her statement that

there is so little known about plagio in the UK. I often feel like

we are all operating in the dark and are relying on each other for

knowledge because there is so little (or no) unbiased professional

opinion on which we can rely. I didn't know about Steve Mottram when

I chose to go to Dr Blecher (and much as I think he has done a good

job, I would have liked the choice), and I certainly didn't know

Chelsea and Westminster offer a DOCband for very severe cases on the

NHS- like most people, I was shoved on a very long waiting list like

Yannick's mum and basically had no choice but to pay out to get

treatment. Thanks for that info, by the way Jo.

On that note-I went to see Dr Blecher today for our second check

with a little trepidation--- I was particularly worried by what he

had said about the bands, the STARband and the CRANIO being

basically the same (although I think Lucia's correction is great, I

don't want to think she is being treated by someone who is factually

incorrrect in the description of their product), so I asked him

directly whether the helmet we were using was active or passive- to

my astonishment he said it was an active helmet! This explains why I

have seen such quick correction (2cm asymmetry corrected in 10

weeks, only 3mm to go)

I have always described Lucia's helmet as passive because I saw it

descibed by other people here as such and so genuinely thought it

was. I told him that I thought his helmet was passive (although his

literature, in fairness, doesn't describe it as such). He said he

doesn't stress the active part, because in his opinion (NOT MINE,

I'm just repeating what he said because it surprised me), it still

relies very heavily on natural growth- so the passive/active

distinction is not really as enormous as the language implies. He

just calls it the CRANIO helmet.

It is a shame that this world does seem a bit beset by professional

rivalry and a lack of information. It does make it very hard for the

ordinary mum or dad out there to find out who to see, when to see

them and what to think of the treatment advice they receive. I feel

like I am finding out all the information I needed three months ago

now- does anyone else feel like that?!

I really feel for all you US people who have to negotiate the

insurance problems as well as provider problems, I think it is a

miracle so many of us actually manage to get the right treatment for

our babies at all!!!

All the best

Hannah (mum to Lucia, London, UK)

Plagio, Cranio helmet, (I had to change it now) 4th July'04

In Plagiocephaly , " redlocks2003 " <redlocks@i...>

wrote:

> ,

>

> As far as I know, despite the similarity in names, the CranioCap

by

> Gillette and the German Cranio Helmet by Dr. Blecher are totally

> different products. I am unaware of the CranioCap being offerred

> anywhere other than just the Gillette network of hospitals here in

> the US. I have heard from other parents who go to Dr. Blecher

that

> the word " cranio " something appears somewhere on his device, but

we

> never have really pinned down a consistent name to call his

helmet,

> which may have led to some confusion on the issue. I'm open to

all

> possibilities, though, so hopefully some of the parents who go to

> Dr. Blecher can shed some light on his helmet design, manufacture,

> and an appropriate name to call it!

>

> Take care,

>

> Christie (Mom to Repo'd Remy)

>

>

>

> > > Hi

> > >

> > > I can understand that you are a little upset by this reply-

> it is

> > > pretty short and to the point! As Willow's mum says,

though,

> Dr

> > > Blecher is the kindest most compassionate person in the

> flesh you

> > > could ever hope to meet- I really doubt that any of his

> patients

> > > (including myself) will write saying anything different or

to

> > > complain about his treatment.

> > >

> > > I think a few things might have happened. I know he got

back

> off

> > his

> > > hols yesterday and he emailed me- and he is off to the UK

> today, so

> > > hence the very rushed reply- he literally hit the ground

for

> 24 hrs.

> > >

> > > Secondly, he is a craniofacial surgeon and academic from a

> German

> > > university who has specialised in this area (not an

> orthotist by

> > > trade I don't think)- he is doing this for research, not

to

> make

> > > vast profits,and I know he is concerned by the

profiteering

> that is

> > > creeping into this area which he sees as one of medical

> treatment.

> > > He won't recommend bands unless absolutely necessary(I

know

> someone

> > > who decided with him not to band)and he won't push you in

the

> > > slightest if you are on the fence. I also know that the

> company he

> > > used to use in the States wanted him to recommend a

certain

> quota

> > of

> > > bands a month and he refused to do this and changed

provider-

> he's

> > a

> > > doctor and therefore would not recommend bands just to

meet

> a quota

> > > (now that IS truly shocking- people might want to ask their

> > > providers if this applies to them- would they even admit

it

> to you,

> > > I think not?)

> > >

> > > I think you have just got his rather blunt opinion as an

> academic

> > > and specialist surgeon. You don't have to take it, and

there

> is no

> > > reason why you shouldn't go and see Steve Mottram- but you

> did ask

> > > for his opinion on him and you have got it!!!

> > >

> > > As for the seeming rudeness of the email- he couldn't work

in

> > sales,

> > > that's for sure!!! He's German and it really does come

over

> as rude

> > > when you write it down in translation. I know this,

because

> my

> > > husband is Bulgarian, and his emails are soooo rude

(because

> they

> > > don't use all the flowery language and pleases etc we do

to

> be

> > > polite). I actually vet all my husband's work emails now

> otherwise

> > > he offends his colleagues something chronic! You don't

have

> this

> > > problem being French- French sounds lovely in English,

both

> spoken

> > > and written!

> > >

> > > I'm not agreeing with his opinion, by the way and it's a

> shame he

> > > didn't expand on why he doesn't recommend treatment past 1

> year -

> > > but just wouldn't want anyone to be put off going to see

> this truly

> > > excellent and compassionate doctor.

> > >

> > > Hannah (mum to Lucia, London, UK)

> > > Plagio, passive helmet, 4th July, 04

> > >

> > >

> >

> >

> >

> > For more plagio info