Re: Desparate new parents in the UK

[Guest guest]

Nick,

Welcome to the group - I'm glad you found us. There is treatment available in

the UK, but you are right about it being much harder to find! We have had a

number of members in this group from the UK. Below I have cut and paste a

message from a member of our group that has done quite a bit of looking in

England for treatment. If this does not give you any good leads for

treatment in the UK then I would recommend looking at Cranial Technologies

webpage. They make the DOCband and have a number of clinics throughout the

US. Maybe you could look through their webpage and find a clinic in a city

with a major airport.

I'm sorry for the struggles that you are going through. It is great that you

are trying to do the best that you can for your baby. You sound like

wonderful parents. Hang in there and hang with this group - you will find all

the support, answers, advice and friendship that you need to make it through

this experience.

Check out the bottom of this post for the message that put on the

board. If you would like his email address so that you can email him directly

let me know - he has been very willing to help other parents in the UK.

Good luck and let us know what you decide to do.

Marci (Mom to )

Oklahoma

Here's the message:

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@...

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

[Guest guest]

Nick,

Keep hanging with this group -- they are wonderful people. I know they have been great for me -- just reading the posts helps out sooooo much. Some times you feel like you are the only ones going through something like this, but you're not. There are a lot of us out there!! You and your wife should feel very proud of yourselves as parents for taking the initiative to do this for your baby girl!! My son was banded at 7 mos. (08/22/01) and is still in the therapy (5 mos. on Jan. 22nd). His head is looking great! Marci's post seemed to have a lot of information for you -- hope it helps you out. Good-luck and keep us informed!!!

AnnMarie and (01/25/01)

Desparate new parents in the UK

Hi to everyone in the group. I'm new to the group so please bear with me if this is a bit off topic.My wife and I are new parents to a gorgeous 8 month old baby girl. However over the months we have noticed that she has developed a "flat head" on her right side. I now know this could be plagiocephaly however its is nearly impossible to have this diagnosed in the the UK let alone have it treated effectively. Unfortunately its still seen as something which will resolve itself over time. At least thats how all the doctors we have seen in the UK have diagnosed it.Being new parents we are becoming increasingly worried about this and our aim is now to bring her to the US to see a specialist there and if need be have a band fitted.Our trouble is we don't know which hospital or specialist to see. We will have to fly over from the UK so we can really go anywhere in the US.Does anyone have any recommendations of who is a good specialist and/or hospital in the US? Our insurance will not cover this so I will be paying for this myself but for my little girl I'll do anything to get her right.Any help would be really appreciated.ThanksNick WhitfieldFor more plagio info