Re: Desparate new parents in the UK

[Guest guest]

There is a recent posting by a gentleman in the UK regarding

treatment over there. You can find it by searching the archives with

the word UK. It is only a little ways back in the archives. As far

as state-side bands, I had my son banded with a DOCband by Cranial

Technologies at 9 and 1/2 months. He has made wonderful progress in

it. I have been very happy with the product and the company that

makes it. I was going to their Paramus, New Jersey, site (just

outside of New York City) but they just opened a satellite office in

Fairfax, Virginia, and transferred treatment there. It is being

staffed one day a week by the orthotist from New Jersey and the

following week by an orthotist from North Carolina. As far as

specialists to see, I saw a Dr. Craig DuFresne in Chevy Chase,

land, who prescribed the band(can be found in Cranial

Technologies website under specialists). I think he is terrific. I

have also heard Dr. Hubli in Virginia is excellent. I believe

another parent flew from the western side of the United States to

Virginia to see him. They are both craniofacial plastic surgeons. I

was told the same thing regarding it correcting itself over time. I

tried repositioning for 8 months with only mild success. Dr.

Dufresne quoted a recent study in his appeal letter for me that

stated if left alone the average correction was 30 percent, if

treated with a band the average correction is 70 percent or greater

depening on the starting age with some children achieving 100 percent

correction. Big difference. I know it is a night and day difference

looking at my son now versus when he started the band. I'm sure you

will get some responses from parents in the UK here soon. Good luck.

Candy, mom to (DOCbanded 10/5/01)

land

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

wrote:

> 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.

>

> Thanks

>

> Nick Whitfield

[Guest guest]

Hi Nick:

Welcome to our group. You are a wonderful, alert parent who is doing

everything possible to get your daughter the attention she deserves

for her plagio.

I see Marci replied to you with the post in our group recently with

excellent UK info.. I hope some of that information will be of help

to you & your daughter.

We also have another member in our group whose son was treated in

London with the STARband. Her name is Aleksandra. I hope she sees

your post & will give you some advice & help (I am sure she will, she

is wonderful!). Her son saw very good results with his band.

Also check out Cranial Technologies webpage. They have numerous

clinics in the states as well as Spain & Canada. www.cranialtech.com

Good luck with all of this. Please let us know if you do find any

help in the UK. Keep us posted.

Debbie Abby's mom DOCGrad

MI

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

> 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.

>

> Thanks

>

> Nick Whitfield

[Guest guest]

Hi Nick,

I am also from the UK (Scotland) and Mum to 3 year old Aidan.I have

posted a couple of times on this site, and although it is reassuring

that your child is not the only one with this diagnosis, I feel that

the group seem to concentrate mainly on active treatments.

We, too, received little information from our Consultant( you can

view Aidan's full story on one of my previous postings).However,

having had moderate/severe plagio, my son is handsome, very happy,

and bright for his age, with no development problems.Yes, he still

has a slightly peculiar shaped head but this does not appear to be

noticed by anyone else unless it is brought to their attention.

The reason I am replying to you is that you appear to have decided to

travel for helmet/band treatment and this seems to be promoted

heavily on this site,however, I would just like to make you aware,

that plagio, in our experience so far, has made no impact on our sons

development.

I am sure that whatever you decide to do will be the best in your

circumstances!

All the best

Lesley

(Scotland)

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

wrote:

> 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.

>

> Thanks

>

> Nick Whitfield

[Guest guest]

Hi Nick:

I wanted to let you know the DOC Band is available in Spain. Dr.

Joan Pinyot and Garriga,DI both trained with Cranial

Technologies in the United States before being licensed. They have

treated UK babies. You can reach Dr. Pinyot at: 34-656314014 or 34-

937148613.

The DOC Band is available in 19 Clinics - 16 in the US. All of the

clinicians providing the DOC Band have undergone extensive training

and testing specific to treatment with the DOC Band. This

training/testing assures the results are the same in all DOC Band

Centers.

I would also be happy to help you with physician names/phone numbers

in the United States. You can email me directly at

erickson@... or call 480-505-1840 ext 231.

Sincerely

Carol kson

Cranial Technologies, Inc.

Tempe, Arizona

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

wrote:

> 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.

>

> Thanks

>

> Nick Whitfield

[Guest guest]

Hello all

I really have not forgotten about you and I read all the mails

I am writing as a mother of 5 oldest 23 youngest (Boo) 15 mths. Boo had plagio and it has been a struggle to get treatment here in UK until it was discovered Boo's asymmetry was causing other difficulties for him. Boo is now 15 mths and has just learnt to sit although he does tend to wobble over onto his left (weak Side)

One problem for parents here in the Uk is if you are a first time parent you are often put down as paranoid and just wanting a sweet round faced little one, I was put down as an over anxious mother and even lecher told me not to worry, well I knew something was wrong and insisted that Boo had a scan, immediately after the scan he was referred to Gt Ormond St hosp. He sees many different specialists there. I was told Boo had IRG and compression, he has a scoliosis, severe reflux, hirsprungs, hearing difficulties, stunted growth and much more. Wherever you are in the UK you can ask to be referred to a craniofacial surgeon. I have also used my contacts as a NHS professional. I would tell all parents out there you know your child better than any one so stand your ground and insist.

One thing I have refused point blank is correction surgery, Boo does have an odd shape head but he has enough operations without one which I think would be totally unnecessary for him, merely to make him look rounder

Good luck

Ann and Boo

[Guest guest]

My name is Aleksandra and I live in the UK. My son was treated for

plagiocephaly here in London, with band identical to DOC band.

Dr.Blecher is a German doctor who used to work for Cranialtech, and

treated hundreds of children, and is a great doctor and a wonderful

person. His email address is Joerg.C.Blecher@...

Please, write to me on aleqsandra@... so I can give you all

the information you need.

Sincerely,

Aleksandra