Re: totally confused and worried uk parent

[Guest guest]

> Hi Eleanor:

> Welcome to our group! We have a lot of UK members in our group. I

> searched the archives and found this message that could be of help

to

> you. This was posted 2 or 3 mos ago by another UK member, he

posted

> this info. to be of any help to other UK parents like you. I

really

> hope this helps some: Here you go: Debbie Abby's mom Michigan

> > Hi,

> >

> > We recently found this group very useful as we were desperately

> > searching round to figure out what was best for our daughter

Molly

> > and things were quite confused here in the UK.

> >

> > I therefore wanted to post something about the UK in the hope

that

> > others may find this posting in the future.

> >

> > (FYI, Regarding Molly it turns out that her case is quite mild

and

> > does not require helmet therapy.)

> >

> > 1. In the UK things are very confused but it is clear that you

> child

> > should go and see one of the four regional craniofacial centres

in

> > Liverpool, Birmingham, London and Oxford.

> >

> > These guys are very negative on helmets but are the real experts.

> >

> > 2. For the helmet point of view, there is only one guy to talk to

> and

> > that is Dr. Blecher. You can find a link to him on the website

and

> > his email is: Joerg.C.Blecher@c...

> >

> > 3. There is a guy in Bristol who is doing helmets. I haven't met

> him

> > and didn't get a helmet off him but my strong feeling is that Dr.

> > Blecher is more experienced and offering a much higher quality

> > soltuion.

> >

> > I hope this is of use and thanks to all for your help up to now.

> >

> > Cheers,

> >

> > Van Buren

i am a parent in the uk sheffield that has a six month old son who

has severe lazy lambdoid syndrome and was born with torticollis which

is now a lot better i have been given no help or support and have had

to push everything myself. At the moment after months of worry and

upset we are in the process of being casted for a hat at bristol and

was hoping that this would be the way foreard it has caused a hell of

a lot of trouble in sheffield as ithink we are the first to push this

but my sons head is very twisted at the back and his ears are very

misplaced anyway further upset has arisen it has been suggested by

the craniofacial group after seeing my son that it could be

craniocynostosis and that we really need a cat scan and to be

referred to birmingham i now do not know what to do as we are having

the hat fitted on thursday please can anyone offer any advice as

icant think straight at the moment thanks