RE: New to the group - GERMANY

May 1, 2008

Welcome Toni!

I am not sure about the options in Germany.

I know there is a CT in Spain... and I think there might be some sort of band provider in England... but I'm not 100% sure.

You do need a drs rx for a band for one to be made... If you are not happy with the drs response then get a 2nd opinion... or go see a craniofacial dr. We had to push to get a dr to listen to us and it was frustrating... I just didn't want to pass the window of correction waiting to see if it would correct on it's own.

Feel free to post pics so we can see your baby!

Hopefully you will find a dr who will listen and help you.

I changed the heading so that if there is someone with knowledge about germany, maybe they can help you. :-D

Jen and Luli - 28 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

New to the group

Hello all! I am new to the group and am hoping you can help me. I

have looked through some of the posts but to be honest that is very

time consuming to find exactly what you are looking for.

My daughter is 5 1/2 months old and I have been thinking about having

her banded because of her head shape. I have asked the doctor about it

twice and he says that when she starts moving around it will get

better. I was okay with that in the beginnning but I just worry that

it won't get better. Right now, her head is completely flat in the

back, and on the right side it is even flatter...if that makes sense.

He right cheek is bigger and so is her eye. It is very disturbing to

me. I feel so bad for her, ofcourse she has no idea that her head is

not round. Has anyone had to do this without the permission of the

doctor? Has anyone had to do this while living overseas? I live in

Germany now and won't be back to the states for another three years.

Although, I am more than willing to travel back if it means my daughter

will get a helmet. Your input is greatly appreciated.

TIA,

Toni

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May 2, 2008

Hi Toni,

I am also living overseas (Australia).

My son had right plagio and brachy (he was also flatter on the right side, as

you described). I think it was pretty severe to start, but it isn’t

much of a concern in this part of the world – all the doctors said it was

mild and he would grow out of it. I had to do a lot of research and a lot

of pushing and circumventing the health care system in order to get him

banded. We tried first with a locally made helmet – from 6 months

to 9 months. We did see improvement, but not enough and it may have

worsened in some areas. When the orthotics and neurosurgeon here said he

was finished, I couldn’t believe it – his head looked better but it

still didn’t look normal. So I called a Cranial Technologies office

in the US

– they were so helpful and agreed to look at emailed pictures. As a

result of those conversations, I ended up moving a two year old and a nine

month old to California

for 3 months so my son could have a second band. It was a tough

thing to do, but I am really happy we did it (and honestly I should have done

it when he was 5 months old instead of messing around here…but hindsight

is everything.)

When Cranial Technologies first measured

his head, he had 14mm of asymmetry and he was 2 standard deviations off the

mean for flatness (and the Australian docs told me he was finished!). He

is all done now, and at his exit appointment, he measured 1mm of asymmetry and he

is down to 1 standard deviation off the mean for his overall flatness across

the back. He does still have some facial asymmetry, but I think I am the

only one who really notices it and I have to admit I spent so much time worried

about his head that I am probably a bit too critical. We just got back

home two weeks ago and it was all totally worth it.

So, I guess my advice is to explore your

options wherever you are in Germany

and see what you think – and if you aren’t comfortable with the

options then I can tell you that you are not insane or over-the-top to hop on a

plane and get it taken care of in the states. But recognize that the

helmets need to be adjusted every 2 weeks so you will not want to be flying

back and forth – if you choose to get treated in the US, then you will

need to be there for at least 2 months. I just went through all of this,

so please feel free to email me any questions I am happy to help.

Best,

From:

Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of JenandLuli@...

Sent: Friday, May 02, 2008 3:51 PM

Plagiocephaly

Subject: Re: New to the

group - GERMANY

Welcome Toni!

I am not sure about the options in Germany.

I know there is a CT in Spain...

and I think there might be some sort of band provider in England... but

I'm not 100% sure.

You do need a drs rx for a band for one to be made... If you are not happy with

the drs response then get a 2nd opinion... or go see a craniofacial dr. We had

to push to get a dr to listen to us and it was frustrating... I just

didn't want to pass the window of correction waiting to see if it would correct

on it's own.

Feel free to post pics so we can see your baby!

Hopefully you will find a dr who will listen and help you.

I changed the heading so that if there is someone with knowledge about germany, maybe

they can help you. :-D

Jen and Luli - 28 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

New to the group

Hello all! I am new to

the group and am hoping you can help me. I