brachy and assymetry untreatable? I don't like that & Picture feedback please

March 5, 2009

I wanted to write about our third visit (which is really our second with the

helmet).

I was late and we actually got a different person so the measuring styles I'm

sure differ because the numbers pretty much stayed the same or got worse on

paper although visually his plagio is better, I'm happy to say. I'll recap the

measurements

2/5/09: plastic surgeon measures cranial vault index of 8 mm

orthotist

2/5/09: circumference=45.8 cm, width=13.4, length=13.9, right front to left

back=14.5, left front to right back=14

(cranial vault index of 5 mm, cephalic ratio 96.5%)

orthotist

2/18/09: circ.=45.8, width=13.5, length=13.9, right front to left=14.6, left

front to right=14

(cranial vault index of 4 mm, CI 95.8%)

different orthotist

3/4/09

circ 45.5 cm

M/L 13.4

A/P 14.1

R>L 14.6

L>R 14.1

cvi of 7mm? this is due to measurement error obviously...

Every single person we met has been fantastic and patient and has answered all

our questions at Boston NOPCO butt this is my problem: I don't like what I'm

hearing. During the appointment we got our Boston Band the orthotist hollowed

out the part that covered the side plagio flat spot which seemed to make sense.

Since then a million questions have popped into my head which I asked during

this week's adjustment. In my opinion there are three things wrong

1. the plagio. Flatness on the right back

2. brachy. severe 96% flatness on the back of the head

3. asymmetry in his face which can be seen from above where the right side of

his forehead and entire face sticks out more than his left. Looking right at him

you can't tell because it's a depth thing.

Well it seems that they can really address #1 and maybe #2 and it's done

serially. First the asymmetry is addressed and then the orthotist said that she

could hollow out the back in general to address the brachy if I really wanted.

Well, YES that is what I want. I had assumed all along that, we are doing this.

The really disappointing part is supposedly they can't address #3 because I was

told the front forehead bones are much more rigid and they can't be altered. I

really don't believe this and I would like some opinions on this especially

since there are tons of posts on evening out assymetric ears etc..

Then I was also told that heads are really flat in the back and they don't

protrude out as much as we think they should but I pointed out that the area

between the top of his head and the top of the spinal neck bone (I don't know

the name) is slightly concave and I don't believe that is normal. I even asked

the orthotist what she thought and she said that it's not flat at all. I

disagree.

It's my impression from reading the posts that the ortho places use the terms

brachy and plagio etc but I feel like my orthotist does not really. I understand

that yes it's relative, and every time we are at NOPCO there are young teens in

wheel chairs but fundamentally I want to give my child the best and make him the

best he can be esthetically and otherwise and I can't feel bad as a mother for

that.

But I do feel like they think the case is so mild that it's probably overkill

and not necessary and he'll grow into it. But the plastic surgeon did explain

that the head will grow in concentric circles (obviously) and that the overall

shape/asymmetry will just get better but not completely dissappear. I also find

this hard to accept.

So along with your thoughts on the 'un-treatability' of #3 I posted some pics of

Octavian V's first scan and some pictures of his head and I would love feedback

from you. It's under Our Plagio Babies O - P.

Thanks!

Ana-

March 5, 2009

sorry, I think I just lost my reply to the internet (ugh)...

I don't think you're getting great answers. The plagio is mild, but the brachy

isn't. What about a consult at CT in connecticut?

My daughter has been out of her band for over 2 years and I think her brachy is

the same as when she graduated, so now is definitely the time to do something.

Facial asymmetry should correct with the head shape. If there is tort PT will be

needed too since it can contribute to facial asymmetry. Sydney's forehead

bossing resolved while in the band. Our ortho also told us that sometimes

improves on its own since the forehead gets longer as babies grow older, and it

improves from that growth.

-christine

sydney, 3 yrs, starband grad

>

> I wanted to write about our third visit (which is really our second with the

helmet).

> I was late and we actually got a different person so the measuring styles I'm

sure differ because the numbers pretty much stayed the same or got worse on

paper although visually his plagio is better, I'm happy to say. I'll recap the

measurements

>

> 2/5/09: plastic surgeon measures cranial vault index of 8 mm

>

> orthotist

> 2/5/09: circumference=45.8 cm, width=13.4, length=13.9, right front to left

back=14.5, left front to right back=14

> (cranial vault index of 5 mm, cephalic ratio 96.5%)

>

> orthotist

> 2/18/09: circ.=45.8, width=13.5, length=13.9, right front to left=14.6, left

front to right=14

> (cranial vault index of 4 mm, CI 95.8%)

>

> different orthotist

> 3/4/09

> circ 45.5 cm

> M/L 13.4

> A/P 14.1

> R>L 14.6

> L>R 14.1

>

> cvi of 7mm? this is due to measurement error obviously...

>

> Every single person we met has been fantastic and patient and has answered all

our questions at Boston NOPCO butt this is my problem: I don't like what I'm

hearing. During the appointment we got our Boston Band the orthotist hollowed

out the part that covered the side plagio flat spot which seemed to make sense.

Since then a million questions have popped into my head which I asked during

this week's adjustment. In my opinion there are three things wrong

> 1. the plagio. Flatness on the right back

> 2. brachy. severe 96% flatness on the back of the head

> 3. asymmetry in his face which can be seen from above where the right side of

his forehead and entire face sticks out more than his left. Looking right at him

you can't tell because it's a depth thing.

>

> Well it seems that they can really address #1 and maybe #2 and it's done

serially. First the asymmetry is addressed and then the orthotist said that she

could hollow out the back in general to address the brachy if I really wanted.

Well, YES that is what I want. I had assumed all along that, we are doing this.

The really disappointing part is supposedly they can't address #3 because I was

told the front forehead bones are much more rigid and they can't be altered. I

really don't believe this and I would like some opinions on this especially

since there are tons of posts on evening out assymetric ears etc..

>

> Then I was also told that heads are really flat in the back and they don't

protrude out as much as we think they should but I pointed out that the area

between the top of his head and the top of the spinal neck bone (I don't know

the name) is slightly concave and I don't believe that is normal. I even asked

the orthotist what she thought and she said that it's not flat at all. I

disagree.

>

> It's my impression from reading the posts that the ortho places use the terms

brachy and plagio etc but I feel like my orthotist does not really. I understand

that yes it's relative, and every time we are at NOPCO there are young teens in

wheel chairs but fundamentally I want to give my child the best and make him the

best he can be esthetically and otherwise and I can't feel bad as a mother for

that.

>

> But I do feel like they think the case is so mild that it's probably overkill

and not necessary and he'll grow into it. But the plastic surgeon did explain

that the head will grow in concentric circles (obviously) and that the overall

shape/asymmetry will just get better but not completely dissappear. I also find

this hard to accept.

>

> So along with your thoughts on the 'un-treatability' of #3 I posted some pics

of Octavian V's first scan and some pictures of his head and I would love

feedback from you. It's under Our Plagio Babies O - P.

>

> Thanks!

> Ana-

>

March 5, 2009

I can understand how they would have to treat the plagio first and then focus on

the brachy, because once they shave the foam out, they can't put it back. So I

assume they are shaving out the right side a little at a time, and then once the

right side of his head catches up with the left, they'll start shaving out all

across the back evenly to promote growth there.

However, the " if you want " comment bothers me because of course, that's why

you're there. I can't see how the brachy is untreatable. Yes, you might not get

mega-roundness back there, but you should definitely see a decent improvement

(assuming the ortho is doing their job).

As far as the forehead, that concerns me too, because the forehead can

definitely be corrected. It's the skull base and ear asymmetry that are the

hardest to correct because the bones are set up differently and harder to move

down there. But the forehead is usually pretty easy (especially in your son's

case, because I can see it, but I'd put it in the mild to low moderate category,

so I don't see how it couldn't be fixed).

As for the facial asymmetry, again that can be harder to correct because the

ears need to move to correct the puffy cheek. Improvement to the forehead

bossing should help even out any eye asymmetry though. I've learned that at

least some facial asymmetry (i.e. puffy cheek) can be due to residual effects of

torticollis due to low muscle tone (I don't believe you mentioned tort, but just

for anyone else out there reading). My son was banded late, so we did not see a

ton of improvement in his facial asymmetry while he wore the band (though we did

see some), but in the almost 6 months since he graduated and with speech therapy

exercises to build up his face muscles on his weak side, I can see a gradual

natural improvement. It's like his puffy cheek is toning up and becoming more

even with his other side. And I've also learned that once they get older and

become more expressive and talk more and mature, etc., you (or at least I) don't

notice the asymmetry as much anymore. It really seems to blend in to their

maturing features and growing personalities more. At least that's been my

experience.

I can kind of understand where the plastic surgeon explained the concentric

circles making the shape better but not correcting it completely. Basically as

the head gets bigger, the plagio is kind of stretching out a little (I can't

think of any other way to describe it) and the edges get softer, so the flat

spot might appear smaller as the head grows bigger, or it might not seem as

dramatic. I don't know if I'm explaining it well, but I do think I understand

where the plastic surgeon was going with that.

Anyway, I would definitely try to see the same ortho again the next time you go,

just to be consistent with the measurements. Although, as long as you're seeing

visual improvement, that's all that really matters. Please keep us posted.

Good luck!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5