Re: New to subject (UK - South West)

[Guest guest]

Hi and welcome to the group.

I;m not from the Uk, but I'm sure one of the locals will chime in.

I believe you have 2 options, Dr. Blecher and a combo of orthos.

They use the STARBand. Here is their info from the database.

England , London

Mottram, Clinical Specialist Orthotist

10 Harley Street, London, W1G 9PF

01254 267400

stephenmottram@...

www.medistox.net

England, London

Garth / Senior Orthotist

Royal National Orthopaedic Hospital 41 Bolsover Street

44 7771 966 200

We've had quite a few Dr. Blecher cranio cap grads. There is one

little boy i nthe StarBand from and Garth. They are new to

this but seem to be very knowledgeable.

If you need any repo tips here's a link to our repo section ...

Plagiocephaly/files/Repositionin

g%20Headquarters/

Plagiocephaly/links/Repositionin

g_001021174219/

(if the links are more than one line you will need to copy and paste

into your browser).

mom to na

DOC Grad

SC

> Hello

>

> I have just joined the group / board as my 4 month old son Yannick

has

> got plagio (I actually noticed it, not any of the health

professionals

> that checked us regularly after delivery (midwife, GP, Health

> Visitor...). My husband kept saying what a strange shaped head

Yannick

> had and that he thought this was not normal. I browsed the net and

> eventually found the plagio web sites wth pictures of affected kids

> and graphics of the condition and that's when I knew what Yannick

had.

> We made an appointment with our GP who said he only saw something

like

> that once before and it would have to be referred to a

paediatrician.

> We are still waiting to see someone at Derriford Hospital /

Plymouth.

> No appointment yet. Being German I also searched German websites

and

> came about a board of the University Hospital in Giessen and that's

> when I first read the name Dr Blecher. I have in the meantime been

> told he holds clinics in London on a regular basis, so I sent him

an

> e-mail.

> He has suggested to try repositioning first for about 6-8 weeks and

> only if that does not help to contact him again. Does anybody know

> what the waiting times are for appointments with Dr Blecher in

London

> and also

> costs involved should a helmet be necessary ? I suppose no decent

> treatment will be available on the NHS ? Anybody else from the

> Plymouth area out there ?

> Looking forward to hearing from you !!

[Guest guest]

Hi there

How are you? Good that you found the group. I'm from London, and

have had very similar experiences to yourself- I first noticed my

daughter's head was a funny shape at about 3 months, but stupidly

didn't take her to the doctor til she was five months, so missed a

massive window of opportunity for repositioning. Apparently 4-6-

months is a key time for repo because the skull growth is massive

then, so if you can get into repositioning now, it really could make

a big difference to Yannick (cool name by the way- I have a second

cousin called Yannick!). There are loads of tips on this site- I

just wish I had known aboaut it sooner. I think one of the key ones

is the neck stretching exercises (Dr Blecher also recommends this)

as if your baby simply can't turn their head to one side (through

torticollis), then repo won't work anyway. I know someone who has

been repositioning her baby after seeing Lucia, my daughter and

hearing about her, and it has really helped him a lot, he loks much

better in just 6 weeks.

AS for helmets, etc- you are right, the NHS is useless!!! There is

an NHS helmet in Frenchay Bristol, but apparently is it not very

good at all as most of the babies take it off (compliance problem).

There are so many good commercial helmets/bands, it seems crazy the

NHS option is a poor and, most importantly, unresearched option

(there's been no research to evaluate it's effectiveness.)

Nearly everyone here has gone with Dr Blecher- he is very very good

and spot on in his advice (hence he suggested repo until five/six

months)- he won't advise a helmet unless he really thinks it is

necessary. To get to see him though, it might be worth making an

appointment now- he works out of Kings (someone else has given you

the number, phone Sharon, at Kings- she is their secretary- it is DR

Blecher and Bentley's clinic)- the waiting might be six weeks

anyway. That will be a free appointment as it is a self=-referral

NHS clinic. BUT, the NHS won't pay for the helmet and it is about

£1,200. You can see him privately at Harley Street as he goes there

on a Sunday before Kings on the Monday, but that will cost £120. YOu

will have to contact him directly for a private appointment, but

he'll see you at shorter notice. I don't know much about the

STARband in the UK (with Steve mottram) as not many people have used

it on this site, but I wouldn't let that put you off- they sound

like they know a lot about this. I think this cost about £1,500, but

am unsure.

One of the key differences between Dr Blecher's helmet and the

STARband is that DR Blecher's helmet is a passive band, it just

holds the pushed out bits of the head steady and allows natural

growth to fill in the flat parts. The sTARband is an active band and

applies very gentle pressure to the prominent bits as well. AS far

as I know either would be suitable for Yannick- the passive helmet

works well for babies starting before 9/10 months, I think active

helmets can be started later.

Dr Blecher's helmet has been absolutely fantastic for Lucia. She was

older than your son when she started -7 months, and the difference

is incredible. YOu can hardly tell she has had a problem, and she

had severe plagio. She's still got two months to go in the helmet,

and I am completely convinced we will see 100% correction, as Dr

Blecher said. She's not had any real problems wearing it, apart

from when it was really humid, but that won't be a problem now

autumn is upon us! She's adjusted superbly- and doens't seem to

notice it is there. I cannot recommend this option enough if

Yannick's head is not seeing some improvement by 6/8 weeks, it

simply has transformed the way she looks- she looks totally normal

now (which is all I ever wanted in the first place!)

Hope this info helps- if you don't receive many other UK replies

don't worry, most people are on holiday (I'm going off for three

weeks myself on Thurs, so won't reply after Wed!)- I would post an

intro again in mid-sept and you will probably get many more

responses then. There are quite a few UK people, but I think they

are all off enjoying themselves!!!!

BTW_ I'm from Teignmouth, which is down in your part of the world.

Nice to be by the sea!

Take care and post any concerns or questions- let us know how you

get on with repo or how you feel about helmets/bands etc.

Hannah (mum to Lucia, London, UK)

Plagio, passive helmet, 4/7/04

> Hello

>

> I have just joined the group / board as my 4 month old son Yannick

has

> got plagio (I actually noticed it, not any of the health

professionals

> that checked us regularly after delivery (midwife, GP, Health

> Visitor...). My husband kept saying what a strange shaped head

Yannick

> had and that he thought this was not normal. I browsed the net and

> eventually found the plagio web sites wth pictures of affected kids

> and graphics of the condition and that's when I knew what Yannick

had.

> We made an appointment with our GP who said he only saw something

like

> that once before and it would have to be referred to a

paediatrician.

> We are still waiting to see someone at Derriford Hospital /

Plymouth.

> No appointment yet. Being German I also searched German websites

and

> came about a board of the University Hospital in Giessen and that's

> when I first read the name Dr Blecher. I have in the meantime been

> told he holds clinics in London on a regular basis, so I sent him

an

> e-mail.

> He has suggested to try repositioning first for about 6-8 weeks and

> only if that does not help to contact him again. Does anybody know

> what the waiting times are for appointments with Dr Blecher in

London

> and also

> costs involved should a helmet be necessary ? I suppose no decent

> treatment will be available on the NHS ? Anybody else from the

> Plymouth area out there ?

> Looking forward to hearing from you !!

[Guest guest]

Hi

Our son Max (11 months with severe plagio) was fitted with a

STARband by Steve Mottram last week. He has adapted very well and

is now wearing it 23/7.

We explored many options including the NHS Frenchay helmet. I

personally can't recommend that one and have described it in an

earlier message.

We also had a number of telephone discussions with Dr Blecher in

Germany and found him to be very caring and responsive. He inspired

great confidence and I felt he really could help Max. However,

given Max's age we opted for an active helmet.

Steve Mottram has been very flexible and has bent over backwards to

help us.

As far as funding is concerned, I have heard that the NHS has funded

a couple of STARbands fitted by Steve but it very much depends on

where you live and whether the funding is available. We are

currently in dicussions with BUPA. They won't pay for the helmet

(£650) but are considering whether they will pay for Steve's time

(£850). Steve has said they have done this on a few occasions.

Please take heart from the fact that there is still scope for

improvement in a baby as old as Max. I have been encouraged by the

fact that Steve has treated a baby as old as 14 months with positive

results. You have caught the condition in Yannick early and I am

sure you will achieve a positive outcome for him.

Best of luck and if I can be of any help with anything please let me

know.

Jan

Shropshire

> Hello

>

> I have just joined the group / board as my 4 month old son Yannick

has

> got plagio (I actually noticed it, not any of the health

professionals

> that checked us regularly after delivery (midwife, GP, Health

> Visitor...). My husband kept saying what a strange shaped head

Yannick

> had and that he thought this was not normal. I browsed the net and

> eventually found the plagio web sites wth pictures of affected kids

> and graphics of the condition and that's when I knew what Yannick

had.

> We made an appointment with our GP who said he only saw something

like

> that once before and it would have to be referred to a

paediatrician.

> We are still waiting to see someone at Derriford Hospital /

Plymouth.

> No appointment yet. Being German I also searched German websites

and

> came about a board of the University Hospital in Giessen and that's

> when I first read the name Dr Blecher. I have in the meantime been

> told he holds clinics in London on a regular basis, so I sent him

an

> e-mail.

> He has suggested to try repositioning first for about 6-8 weeks and

> only if that does not help to contact him again. Does anybody know

> what the waiting times are for appointments with Dr Blecher in

London

> and also

> costs involved should a helmet be necessary ? I suppose no decent

> treatment will be available on the NHS ? Anybody else from the

> Plymouth area out there ?

> Looking forward to hearing from you !!

[Guest guest]

Hello and thank you for your quick e-mail

I have received three replies so far and all were

-just as yours- jam packed with information - we are

so pleased to have found this forum

We have still not received an appointment from our

local hospital to see a paediatrician, so all the

information we can gather in the meantime is so much

appreciated, especially hints and tips on

repositioning which we are currently trying until we

can see a doctor. If we can't see improvement within

the suggested 8 weeks (suggested by Dr Blecher in an

e-mail) we will make an appointment with Dr Blecher in

London and if necessary pay for the helmet privately

if the NHS can't help us. As I am German I think I

would feel more comfortable to see Dr Blecher because

I can speak German to him and this will help me

understand everything much better which can also be

reassuring, I think.

Thanks again

, & Yannick

--- jangraham2002 <janandkingy@...> wrote:

---------------------------------

Hi

Our son Max (11 months with severe plagio) was fitted

with a

STARband by Steve Mottram last week. He has adapted

very well and

is now wearing it 23/7.

We explored many options including the NHS Frenchay

helmet. I

personally can't recommend that one and have described

it in an

earlier message.

We also had a number of telephone discussions with Dr

Blecher in

Germany and found him to be very caring and

responsive. He inspired

great confidence and I felt he really could help Max.

However,

given Max's age we opted for an active helmet.

Steve Mottram has been very flexible and has bent over

backwards to

help us.

As far as funding is concerned, I have heard that the

NHS has funded

a couple of STARbands fitted by Steve but it very much

depends on

where you live and whether the funding is available.

We are

currently in dicussions with BUPA. They won't pay for

the helmet

(£650) but are considering whether they will pay for

Steve's time

(£850). Steve has said they have done this on a few

occasions.

Please take heart from the fact that there is still

scope for

improvement in a baby as old as Max. I have been

encouraged by the

fact that Steve has treated a baby as old as 14 months

with positive

results. You have caught the condition in Yannick

early and I am

sure you will achieve a positive outcome for him.

Best of luck and if I can be of any help with anything

please let me

know.

Jan

Shropshire

> Hello

>

> I have just joined the group / board as my 4 month

old son Yannick

has

> got plagio (I actually noticed it, not any of the

health

professionals

> that checked us regularly after delivery (midwife,

GP, Health

> Visitor...). My husband kept saying what a strange

shaped head

Yannick

> had and that he thought this was not normal. I

browsed the net and

> eventually found the plagio web sites wth pictures

of affected kids

> and graphics of the condition and that's when I knew

what Yannick

had.

> We made an appointment with our GP who said he only

saw something

like

> that once before and it would have to be referred to

a

paediatrician.

> We are still waiting to see someone at Derriford

Hospital /

Plymouth.

> No appointment yet. Being German I also searched

German websites

and

> came about a board of the University Hospital in

Giessen and that's

> when I first read the name Dr Blecher. I have in the

meantime been

> told he holds clinics in London on a regular basis,

so I sent him

an

> e-mail.

> He has suggested to try repositioning first for

about 6-8 weeks and

> only if that does not help to contact him again.

Does anybody know

> what the waiting times are for appointments with Dr

Blecher in

London

> and also

> costs involved should a helmet be necessary ? I

suppose no decent

> treatment will be available on the NHS ? Anybody

else from the

> Plymouth area out there ?

> Looking forward to hearing from you !!

For more plagio info, go to

www.plagiocephaly.org/support