Re: New - How much improvement can I expect for Brachy? (In need of encouragement)

April 15, 2010

,

I think your daughter looks wonderful. And thank you for your kind words re:

's head. I'm probably too close to realize how much he has changed--even

more so since 2/4 when his 2nd PhotoStudy was done.

will graduate within the month. Our clinician at CT wasn't sure if we'll

get one more adjustment (on the 28th) or not. So either two more weeks or four

and we're finished. I'll share exit photos with the group.

I'm glad I went with the 2nd DOC Band, however. Even though we paid out of

pocket, it was worth it. I would not have been satisfied with how his head

looked after 8 weeks, when he outgrew the first band. But now, after nearly 4

months, I am.

Robyn

> >

> > My son Rayan just started in the band last Monday, and as encouraged by some

members in this group he has adjusted well and even is sporting cool decoration

on his band ---after hours here and there painting it. My current concern is

about how well the Doc Band will actually be able to fix his Brachy.

> >

> > Rayan has some asymmetry but more symmetrical flattening in the back and

pushing up of the back of his head making a sloping forehead and extra height in

the back and a shorter profile. This really messes with his profile, and

speaking as someone who myself has more of a peaked/sloped profile, I know the

trouble this causes with hairstyles and wearing hats, etc.

> >

> > When we went to get the band fitted, the specialist told me that since they

can't " push in " bone, all they could hope for was to hold in place the widest

points and let it even itself out. BUT the band doesn't really hold in the

height of the head, at least, it doesn't seem to.

> >

> > So, my question is, for those of you who had kids with brachy, where did you

see improvement with the doc band? Did the head actually gain length in the

back, seem less sloped from the forehead and lose some of the height in the

back? Does it proportionately seem less wide? Rayan is at 91% CRI with some

asymmetry. How much real improvement in profile can I expect (he is currently

7.75 months old)?

> >

> > Thanks! And if you could direct me to some before and after brachy pics too

that would be great.

> >

>

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