Re: UPDATE - Desparate Parents in the UK

[Guest guest]

Hi, hope the Dr in London works out for you. I think Cranial

technologies in Spain would be a second better option than Boston.

With a CT helmet you need weekly or bi weekly re fittings , and if

you have a red spot you would have to stop treatment until you had a

re fit. The USA thing would only work if you could stay here through

treatment. I am a mother of a 2.5 yr old who was treated at CT in

Miami. I formally did live in the UK.

Good luck. Lorraine FL, USA.

--- In Plagiocephaly@y..., " purplesystems " <nick.whitfield@p...>

wrote:

> Hi everyone,

>

> First off I would like to thank everyone who posted a response to

my

> appeal to find a specialist who I can see about my 8 month old baby

> daughters head.

>

> Loads of you responded with encouragement, advice and directions in

> where to look and as a result I've now found a german doctor (Dr

> Blecher) in London who understands this condition. I'm in the

process

> of making an appointment to see him and hopefully all will be right

> from there onwards.

>

> If there are still issues however which cannot be resolved in the

UK

> then I will take her to the Boston Childrens Hospital as I have

been

> contacted by several UK parents who have been there as well as some

> American parents who have all said how good it is. It also is

easier

> to get to from the UK which I exepect is a nightmare flying for 7

> hours with an 8 month old who gets bored easily

>

> Its great to know your not alone out there and all the comments and

> feedback has been brilliant. Thank you everyone for that.

>

> I will of course let everyone know how baby Tegan is getting on.

> We're seeing out local doctor on Wednesday to resolve any insurance

> details and then on to see Dr Blecher.

>

> Thanks again

>

> Nick and Tegan

[Guest guest]

Nick:

That's terrific you have an appt with Dr. Blecher. You finally have

someone who will listen to your concerns and take you seriously. I

wouldn't want to fly to Boston either with a hyper infant!!! YIKES.

Be sure you let us know how it all goes. I love the name Tegan -

I've never heard it, it's adorable!

Debbie Abby's mom DOCGrad

MI

--- In Plagiocephaly@y..., " purplesystems " <nick.whitfield@p...>

wrote:

> Hi everyone,

>

> First off I would like to thank everyone who posted a response to

my

> appeal to find a specialist who I can see about my 8 month old baby

> daughters head.

>

> Loads of you responded with encouragement, advice and directions in

> where to look and as a result I've now found a german doctor (Dr

> Blecher) in London who understands this condition. I'm in the

process

> of making an appointment to see him and hopefully all will be right

> from there onwards.

>

> If there are still issues however which cannot be resolved in the

UK

> then I will take her to the Boston Childrens Hospital as I have

been

> contacted by several UK parents who have been there as well as some

> American parents who have all said how good it is. It also is

easier

> to get to from the UK which I exepect is a nightmare flying for 7

> hours with an 8 month old who gets bored easily

>

> Its great to know your not alone out there and all the comments and

> feedback has been brilliant. Thank you everyone for that.

>

> I will of course let everyone know how baby Tegan is getting on.

> We're seeing out local doctor on Wednesday to resolve any insurance

> details and then on to see Dr Blecher.

>

> Thanks again

>

> Nick and Tegan

[Guest guest]

Hi Nick

I'm sorry I didn't speak to you sooner but I haven't checked the

group out for a while. I have never posted before but have found the

group really helpful in response to my father in laws request for

help for our son Ethan in the UK.(See archives )

We have been in contact with Dr Blecher who offered us an

appointment. We were really happy with this but then began to think.

Why should we immediately go private without first of all exhausting

the other possibilities. We had already seen a GP in November who was

understanding and referred us to a paediatrician - to rule out

cranio. We know it's not cranio having read up so much about it,

although we still want it checked out of course. Anyway, it was now

January and no sign of an appointment although we could have gone to

London (from Bristol) to see Dr Blecher on th 4th. To be honest with

you, money is tight and we could not even afford the train ride to

London, however we would do anything to make sure Ethan is OK.

We decided to go along and see our own GP (who incidentally has a

baby son not much older than Ethan). He was so understanding and

sympathetic and told us he would do all he could to help us. He

understood our hesitation about putting Ethan in a helmet for god

knows how long (he's 8 months now)but he also understood that the

main problem is the misalignment of Ethan's ears and suggested that

if it wasn't sorted then he might require plastic surgery later on to

sort them out - imagine finding a pair of glasses to fit!!

Anyway the long and short of it is that Ethan now has an appointment

with a neurologist in Bristol - just down the road - who runs special

clinics for plagiocephaly. He also apparently does the helmet therapy

under the NHS. Now, mentioned this guy I think in one of his

posts to us but thought that he may not be experienced enough. Of

course I don't know yet but he seems quite clued up and sympathetic,

and the best thing, in our opinion, is that seeing as this is NHS

treatment, then he will only prescribe it if absolutely necessary.

I don't know how helpful this is to you. All I know is that we Brits

worry that we may be too dramatic and this maybe OUR reason for being

hesitant. I am just glad that we have not hit the brick wall that so

many other parents do in the UK.

Sorry for going on but I'm making up for not posting before now. Good

luck with whatever you decide to do. I'm sure Dr Blecher will work

out fine and save you the trip to US. I know we would not have been

able to do that so I respect your devotion to your daughter.

By the way, Dr Blecher saw the pictures of Ethan and said he looked

to have moderate plagio. Hardly anybody notices it and all we see is

a beautiful, smiling baby. If it wasn't for the misalignment of the

ears I would not put Ethan through any treatment. I am sure your

daughter is also beautiful with a lovely cornish name (I was born in

Cornwall). Did you know that Tegan is also Welsh for " Toy " - Lovely!!!

Good Luck and take care

--- In Plagiocephaly@y..., " purplesystems " <nick.whitfield@p...>

wrote:

> Hi everyone,

>

> First off I would like to thank everyone who posted a response to

my

> appeal to find a specialist who I can see about my 8 month old baby

> daughters head.

>

> Loads of you responded with encouragement, advice and directions in

> where to look and as a result I've now found a german doctor (Dr

> Blecher) in London who understands this condition. I'm in the

process

> of making an appointment to see him and hopefully all will be right

> from there onwards.

>

> If there are still issues however which cannot be resolved in the

UK

> then I will take her to the Boston Childrens Hospital as I have

been

> contacted by several UK parents who have been there as well as some

> American parents who have all said how good it is. It also is

easier

> to get to from the UK which I exepect is a nightmare flying for 7

> hours with an 8 month old who gets bored easily

>

> Its great to know your not alone out there and all the comments and

> feedback has been brilliant. Thank you everyone for that.

>

> I will of course let everyone know how baby Tegan is getting on.

> We're seeing out local doctor on Wednesday to resolve any insurance

> details and then on to see Dr Blecher.

>

> Thanks again

>

> Nick and Tegan

[Guest guest]

Nick,

I'm sorry that I didn't get a chance to reply to your initial post,

but I just wanted to say that I am thrilled for your family that

you're hopefully well on your way to a rounder head for Tegan! I have

to agree that I love the name Tegan, it's beautiful!!

Take care and please keep us up to date!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

--- In Plagiocephaly@y..., " purplesystems " <nick.whitfield@p...>

wrote:

> Hi everyone,

>

> First off I would like to thank everyone who posted a response to

my

> appeal to find a specialist who I can see about my 8 month old baby

> daughters head.

>

> Loads of you responded with encouragement, advice and directions in

> where to look and as a result I've now found a german doctor (Dr

> Blecher) in London who understands this condition. I'm in the

process

> of making an appointment to see him and hopefully all will be right

> from there onwards.

>

> If there are still issues however which cannot be resolved in the

UK

> then I will take her to the Boston Childrens Hospital as I have

been

> contacted by several UK parents who have been there as well as some

> American parents who have all said how good it is. It also is

easier

> to get to from the UK which I exepect is a nightmare flying for 7

> hours with an 8 month old who gets bored easily

>

> Its great to know your not alone out there and all the comments and

> feedback has been brilliant. Thank you everyone for that.

>

> I will of course let everyone know how baby Tegan is getting on.

> We're seeing out local doctor on Wednesday to resolve any insurance

> details and then on to see Dr Blecher.

>

> Thanks again

>

> Nick and Tegan