RE: Scaphocephaly - what happens if left untreated?

April 26, 2008

Hi there, Tina.

I'm a long time member, (there were only 24 members when I first joined!) and

lurk from time to time. My son had

a scaphocephalic head shape and it's not too common. (He was breech and large).

There have been others on this

site through the years, but not many. My son's headshape was treated with a DOC

band in the year 2000. Cranial

Tech makes three different types of bands (one for plagiocephaly, one for

brachycephaly, and one for

scaphocephaly).

There is a chart on Cranial Tech's website to assess severity of all three

types, just to get an idea of this. A

lot of time premies do get a long narrow shape, and I'm not sure what happens to

those that are really severe.

We did a LOT of head watching prior to banding our son, and frankly, didn't ever

see anyone with such a shape.

The fact that he could not lay on his back without his chin being pushed into

his chest was a major concern for

me. He had no slope at all, and his head jutted straight back. He had indented

temples that are also seen with

those children with fused sagittal suture, but his suture was not fused at all

(they did a CT scan to be sure).

We repositioned him by putting a towel or mini-boppy behind his neck so that he

spent time on his occiput

to " push " it in, but his jutted out so much I was afraid that his skull would

get harder without it getting to an

acceptable length, which is why I sought out a molding device. I also wanted

just a bit of a slope.

When he was in his band, we went out for ice cream one day, and I have to say

that I saw a little boy, who was

about 4 who had all of the characteristics that my son had -- very long, narrow

head, and indented temples. I

know that with age and time the face does change and so things start to even

out, and that what he looked like at

4 he would look like today, 8 years later. However, I have to admit I really

hoped that the mom or dad didn't ask

me why our son was in a band.

The cranial assessment can be found here -- (my son was a three on all criteria)

http://www.cranialtech.com/medicalinfo/assessment/scaphocephaly.pdf

His short bio with a repositioning picture is found here:

http://www.cappskids.org/CAPPSPlagioKidQuinn.htm

If you have any questions, feel free to email me at tnt@...

Take care.

mom to Quinn, born 11/99, DOCband grad 10/00

>------- Original Message -------

>From : tina_f528[mailto:tina_f528@...]

>Sent : 4/26/2008 9:31:50 AM

>To : Plagiocephaly

>Cc :

>Subject : RE: Scaphocephaly - what happens if left untreated?

>

>I have a daughter who is currently in a band due to plagiocephaly. I

have become very critical of babies' head shapes ever since we noticed

that something was wrong with hers. I have thought for several months

now that my nephew's head looked 'odd', very narrow and long, but

nobody else seems to be concerned and so I didn't worry about it. He

was born at 30 weeks and spent two months in intensive care before

coming home. I also know that his pediatrician has looked at his head

because he mentioned something about a flat spot to my sister in law

several months ago - which went away with repositioning.

I was wondering if anybody here has experience with scaphocephaly and

knows what happens if this is left untreated. I don't think that his

sutures have fussed yet, so that shouldn't be the problem. Also, his

face looks fine, it's just that his head is very long. Does anybody

know where I can find pictures of older babies who were not treated?

Thank you!

------------------------------------

For more plagio info

April 26, 2008

CORRECTION....

In the last paragraph I said " I

know that with age and time the face does change and so things start to even

out, and that what he looked like at

4 he would look like today, 8 years later. "

What I meant to say is " ....and that what he looked like at 4 he wouldn't look

like today, 8 years later. "

Sorry.

>------- Original Message -------

>From : [mailto:tnt@...]

>Sent : 4/26/2008 7:57:23 PM

>To : Plagiocephaly

>Cc :

>Subject : RE: Scaphocephaly - what happens if left untreated?

>

Hi there, Tina.

I'm a long time member, (there were only 24 members when I first joined!) and

lurk from time to time. My son had

a scaphocephalic head shape and it's not too common. (He was breech and large).

There have been others on this

site through the years, but not many. My son's headshape was treated with a DOC

band in the year 2000. Cranial

Tech makes three different types of bands (one for plagiocephaly, one for

brachycephaly, and one for

scaphocephaly).

There is a chart on Cranial Tech's website to assess severity of all three

types, just to get an idea of this. A

lot of time premies do get a long narrow shape, and I'm not sure what happens to

those that are really severe.

We did a LOT of head watching prior to banding our son, and frankly, didn't ever

see anyone with such a shape.

The fact that he could not lay on his back without his chin being pushed into

his chest was a major concern for

me. He had no slope at all, and his head jutted straight back. He had indented

temples that are also seen with

those children with fused sagittal suture, but his suture was not fused at all

(they did a CT scan to be sure).

We repositioned him by putting a towel or mini-boppy behind his neck so that he

spent time on his occiput

to " push " it in, but his jutted out so much I was afraid that his skull would

get harder without it getting to an

acceptable length, which is why I sought out a molding device. I also wanted

just a bit of a slope.

When he was in his band, we went out for ice cream one day, and I have to say

that I saw a little boy, who was

about 4 who had all of the characteristics that my son had -- very long, narrow

head, and indented temples. I

know that with age and time the face does change and so things start to even

out, and that what he looked like at

4 he would look like today, 8 years later. However, I have to admit I really

hoped that the mom or dad didn't ask

me why our son was in a band.

The cranial assessment can be found here -- (my son was a three on all criteria)

http://www.cranialtech.com/medicalinfo/assessment/scaphocephaly.pdf

His short bio with a repositioning picture is found here:

http://www.cappskids.org/CAPPSPlagioKidQuinn.htm

If you have any questions, feel free to email me at tnt@...

Take care.

mom to Quinn, born 11/99, DOCband grad 10/00

>------- Original Message -------

>From : tina_f528[ mailto:tina_f528@...]