Re: A difficult decision not to band cameron f

[Guest guest]

Jo, I support you in whatever decision you deem is right for your

son. You have done your own research and weighed your options. The

picture of Cam is awfully dark but I do see some improvement in his

headshape. I for one do not have all of the answers for what the

future holds but I would love it if you kept us posted in the coming

months and shared another picture of him in a year's time. I am

going to keep an eye on plagio-land for some time now. Best wishes

to you and Cammy and your fight for funding.

Sue

Colin F.

STARband grad

>

> Hello there,

>

> well I haven't posted on this board for some time so I thought I

> would update on Cammy F. Well we finally had our last couple of

> appointments about cam's head. The craniofacial specialist did

> finally give us the option of the band but he did say that he

thought

> that in a year we would see as much improvement in Cam's brachy

> naturally as with a band-he had spoken to steve mottram and has

> referred some children to him already so he left the decision up to

> us saying that at the very least cam would have to wear the helmet

> for 1 year. By the way for any mothers in the uk the nhs helmet

they

> use is not bad looking at all, it is transparent and the guy who

fits

> them fits them to the nhs for free as he is passionate about plagio-

> out of the 700 kids that my consultant has seen this year he has

only

> banded 70-so that can be read in a whole number of ways...

> I also spoke to steve mottram and he thought cam would only need

> about 4 months in a starband but when I mentioned what mr

waterhouse

> had said he did not really say much to contradict him...and steve

had

> only just started treating plagio and brachy babies..so I finally

> think I had enough of not making a decision and I just dont want

cam

> to wear a helmet for the next 12months, in any event I have posted

> the most recent shot of cam in his file-it is another wet hair

photo

> which i think is at the far left of the group of photos-i have seen

a

> major improvment in his headshape this month which i believe is

down

> to cam having a growth spurt and also the repositioning techniques

> that our consultant gave us-(can u believe i am still repositioning

> at 12months :-)....anyway just wanted to let you all know what

> happened to cammy-so I will keep posting photos as the months go on

> and hope that his headshape continues to improve and that hopefully

> this time next year cam and lucia, toby, alexandra and all the

other

> kids in the uk that have gone through this in 2004 will all be able

> to put this behind them whether they were banded or not...

>

>

> thanks very much to everyone for their support though

>

> ps the first of cammy's articles has gone to press

> we have the meeting with our hospital in the morning

>

> also last but not least I am trying to get together funding ideas

for

> chelsea and westminister hospital-they desperately want funding for

a

> starscanner so that children can be treated under the NHS-any ideas

> for funding would be very much appreciated

>

> best wishes

>

> JO mum to baby cammy who is still being repositioned at 12months :-)

> and has seen some improvement

[Guest guest]

Hi Jo

I've been thinking about you lately knowing you had this difficult

decision ahead. I can't seem to see the new photo (they have all

been amalgamated and I can't see the dates on them...-it is very

difficult to see the progression when they are like this), but

having seen Cam in person a couple of weeks ago, I know that his

headshape is definitely much improved since the first photos- it is

much rounder and better looking now-I don't think you would look

twice at him in the street for this reason (you would look at him

because of his eyes, of course, which are absolutely gorgeous!). Who

knows what will happen over the next year- but he certainly has seen

considerable improvement so far.

It's great that you have got articles coming out about this.

Hopefully these could be added to the database here- I for one,

can't wait to read them.

It was lovely to meet up with you and talk all this stuff through-

Cam is a gorgeous little boy and hopefully this issue is receeding

in your mind a bit- it sounds to me like you have reached a decision

you can live with.

Good luck

Hannah (mum to Lucia, London, UK)

Plagio, Cranio helmet, 4th July '04

>

> Hello there,

>

> well I haven't posted on this board for some time so I thought I

> would update on Cammy F. Well we finally had our last couple of

> appointments about cam's head. The craniofacial specialist did

> finally give us the option of the band but he did say that he

thought

> that in a year we would see as much improvement in Cam's brachy

> naturally as with a band-he had spoken to steve mottram and has

> referred some children to him already so he left the decision up

to

> us saying that at the very least cam would have to wear the helmet

> for 1 year. By the way for any mothers in the uk the nhs helmet

they

> use is not bad looking at all, it is transparent and the guy who

fits

> them fits them to the nhs for free as he is passionate about

plagio-

> out of the 700 kids that my consultant has seen this year he has

only

> banded 70-so that can be read in a whole number of ways...

> I also spoke to steve mottram and he thought cam would only need

> about 4 months in a starband but when I mentioned what mr

waterhouse

> had said he did not really say much to contradict him...and steve

had

> only just started treating plagio and brachy babies..so I finally

> think I had enough of not making a decision and I just dont want

cam

> to wear a helmet for the next 12months, in any event I have posted

> the most recent shot of cam in his file-it is another wet hair

photo

> which i think is at the far left of the group of photos-i have

seen a

> major improvment in his headshape this month which i believe is

down

> to cam having a growth spurt and also the repositioning techniques

> that our consultant gave us-(can u believe i am still

repositioning

> at 12months :-)....anyway just wanted to let you all know what

> happened to cammy-so I will keep posting photos as the months go

on

> and hope that his headshape continues to improve and that

hopefully

> this time next year cam and lucia, toby, alexandra and all the

other

> kids in the uk that have gone through this in 2004 will all be

able

> to put this behind them whether they were banded or not...

>

>

> thanks very much to everyone for their support though

>

> ps the first of cammy's articles has gone to press

> we have the meeting with our hospital in the morning

>

> also last but not least I am trying to get together funding ideas

for

> chelsea and westminister hospital-they desperately want funding

for a

> starscanner so that children can be treated under the NHS-any

ideas

> for funding would be very much appreciated

>

> best wishes

>

> JO mum to baby cammy who is still being repositioned at 12months :-

)

> and has seen some improvement

[Guest guest]

Hello Jo

It is great that you finally came to a decision. That is the hard

part. Great to hear that Cam had another growthspurt that you

noticed. Willow had one as well at about 11ish month and rounded

some more. Please keep us up on the repo, and how it goes. It is

very interesting to hear about older kids being repo'd with sucess

Sandy Willow's Mom

Torticollis resolved

Cranio Germany Grad

>

> Hello there,

>

> well I haven't posted on this board for some time so I thought I

> would update on Cammy F. Well we finally had our last couple of

> appointments about cam's head. The craniofacial specialist did

> finally give us the option of the band but he did say that he

thought

> that in a year we would see as much improvement in Cam's brachy

> naturally as with a band-he had spoken to steve mottram and has

> referred some children to him already so he left the decision up

to

> us saying that at the very least cam would have to wear the helmet

> for 1 year. By the way for any mothers in the uk the nhs helmet

they

> use is not bad looking at all, it is transparent and the guy who

fits

> them fits them to the nhs for free as he is passionate about

plagio-

> out of the 700 kids that my consultant has seen this year he has

only

> banded 70-so that can be read in a whole number of ways...

> I also spoke to steve mottram and he thought cam would only need

> about 4 months in a starband but when I mentioned what mr

waterhouse

> had said he did not really say much to contradict him...and steve

had

> only just started treating plagio and brachy babies..so I finally

> think I had enough of not making a decision and I just dont want

cam

> to wear a helmet for the next 12months, in any event I have posted

> the most recent shot of cam in his file-it is another wet hair

photo

> which i think is at the far left of the group of photos-i have

seen a

> major improvment in his headshape this month which i believe is

down

> to cam having a growth spurt and also the repositioning techniques

> that our consultant gave us-(can u believe i am still

repositioning

> at 12months :-)....anyway just wanted to let you all know what

> happened to cammy-so I will keep posting photos as the months go

on

> and hope that his headshape continues to improve and that

hopefully

> this time next year cam and lucia, toby, alexandra and all the

other

> kids in the uk that have gone through this in 2004 will all be

able

> to put this behind them whether they were banded or not...

>

>

> thanks very much to everyone for their support though

>

> ps the first of cammy's articles has gone to press

> we have the meeting with our hospital in the morning

>

> also last but not least I am trying to get together funding ideas

for

> chelsea and westminister hospital-they desperately want funding

for a

> starscanner so that children can be treated under the NHS-any

ideas

> for funding would be very much appreciated

>

> best wishes

>

> JO mum to baby cammy who is still being repositioned at 12months :-

)

> and has seen some improvement

[Guest guest]

Hi Jo,

It's hard to tell b/c the picture is dark, but the ones on the

bottom left do appear to show improvement. Even though Cammy

appears to be a severe case to me, it is very unlikely that he'd

need to wear a helmet for a year. The STARband that Steve Mottram

uses is an active band, and has an average treatment time of 3-4

mos. Banding or not banding is indeed a very difficult decision,

and I really do think you need to have all the correct facts. It is

Orthomerica themselves (who make the STARband) that say the average

is 3-4 mos. You also really need to be at peace with his current

head shape becase no specialist or anyone else can tell you for sure

if his head will improve on its own. Good luck w/the fundraising

and please continue to keep us updated on Cammy.

, mom to Hannah, DOCgrad

Cape Cod, Ma

>

> Hello there,

>

> well I haven't posted on this board for some time so I thought I

> would update on Cammy F. Well we finally had our last couple of

> appointments about cam's head. The craniofacial specialist did

> finally give us the option of the band but he did say that he

thought

> that in a year we would see as much improvement in Cam's brachy

> naturally as with a band-he had spoken to steve mottram and has

> referred some children to him already so he left the decision up

to

> us saying that at the very least cam would have to wear the helmet

> for 1 year. By the way for any mothers in the uk the nhs helmet

they

> use is not bad looking at all, it is transparent and the guy who

fits

> them fits them to the nhs for free as he is passionate about

plagio-

> out of the 700 kids that my consultant has seen this year he has

only

> banded 70-so that can be read in a whole number of ways...

> I also spoke to steve mottram and he thought cam would only need

> about 4 months in a starband but when I mentioned what mr

waterhouse

> had said he did not really say much to contradict him...and steve

had

> only just started treating plagio and brachy babies..so I finally

> think I had enough of not making a decision and I just dont want

cam

> to wear a helmet for the next 12months, in any event I have posted

> the most recent shot of cam in his file-it is another wet hair

photo

> which i think is at the far left of the group of photos-i have

seen a

> major improvment in his headshape this month which i believe is

down

> to cam having a growth spurt and also the repositioning techniques

> that our consultant gave us-(can u believe i am still

repositioning

> at 12months :-)....anyway just wanted to let you all know what

> happened to cammy-so I will keep posting photos as the months go

on

> and hope that his headshape continues to improve and that

hopefully

> this time next year cam and lucia, toby, alexandra and all the

other

> kids in the uk that have gone through this in 2004 will all be

able

> to put this behind them whether they were banded or not...

>

>

> thanks very much to everyone for their support though

>

> ps the first of cammy's articles has gone to press

> we have the meeting with our hospital in the morning

>

> also last but not least I am trying to get together funding ideas

for

> chelsea and westminister hospital-they desperately want funding

for a

> starscanner so that children can be treated under the NHS-any

ideas

> for funding would be very much appreciated

>

> best wishes

>

> JO mum to baby cammy who is still being repositioned at 12months :-

)

> and has seen some improvement