Re: NEW TO GROUP: Desperate for advice! Feeling so helpless!

[Guest guest]

I would ask for a new helmet to be made. The big gap behind the ear which was

filled with foam is my concern. There is no plastic on top of the foam there

from what I can see, so I can't see that it would hold properly (it won't have

enough strength). It looks like it was made wrong then fixed, when it should

have been remade. Otherwise it looks okay. They should make the new band for

free. Also ask them if it is hanger band or star or maybe their own.

It is hard for me to see about the neck problem from the pictures. At the base

of the neck it is really just holding the band in place, not really shaping that

part of the head, so some asymmetry, while not ideal, may not be a problem.

However in the rest of the head I would expect it to be symmetric or nearly so.

The foam spacer at the opening doesn't bother me because our starband had one

and it was fine. This shouldn't be a place where you want to be holding the head

either so is less important.

I'm also confused about the measurements you gave for the cephalic index -

usually this a single number. It doesn't make sense to have it for each side. My

daughter had brachy with very little asymmetry. She started at about 97% at 5

months and graduated at about 85% at 10 months. It was 5 yrs ago so my memory

isn't perfect on the numbers. You can see her before and after pics in the photo

area for this group at Our Plagio Babies S/Sydney M.

The main thing with brachy is that it should hold the extra width at the widest

part of the head and have room for growth in back.

-christine

sydney, 5 yrs, starband grad

>

> Hi all:

>

> I recently joined this forum and as my 6 month old, Raphael, has severe

brachycephaly with mild plagio (I figured it must be quite severe with a

Cephalic index of 99.25% on one side and 97% on the other side). I am located

in Montreal, Quebec in Canada. I have read most of the messages on the forum

and would like to obtain your advice.

>

> We just got our helmet yesterday. It was made at the clinic in Montreal, but

once I saw it, it really look like a Hanger band, so I figure they must get the

helmets from them.

>

> I was not pleased with our visit. The orthosist was 1.15 hr. late. Did not

provide any reason or did not apologize. Here are my concerns:

>

> -the helmet has a piece of strip of material between the opening (scratch

side);

>

> -there was a huge gap behind the right ear, so I insisted to have it

symmetrical. They added a piece of material also.

>

> -when I place the helmet in front of me, i notice that the back of the

neck/nape area is not centered. I would not want this to deform my son's neck.

>

> When I look at the helmet, it just looks like it was " patched up " to correct

misconception in the first place.

>

> I have also heard that brachy is almost impossible to correct with a passive

device. The problem is that I don't know if our helmet is active or passive. I

will post pictures on the forum for you to see and would highly appreciate any

advice. Look for plagio baby R under Raphael.

>

> I am so sad my son cannot get the DOC band as it is not available in Canada

and would have me flying to Connecticut or Chicago for every appointment.

>

> I don't know what to do. Should I look for another clinic or should I take my

helmet elsewhere to get a second advice.

>

> Thanks for your input.

>