Re: Deformational Plagiocephaly

[Guest guest]

Hmm. Will MAY have it. I know he was born with torticollis and his

head shape is in some way b/c of the torticollis and positioning,

although his shape has always been " off " . The people at Cranial

Technologies, along with our neurologist, hasn't mentioned that the

helmet may not work-in fact, due to his age (3 months), they are

hopeful. Do you have a picture you would be willing to share (on

this board or email me: leighstulack@...) and I'll share as

well. Will can't move fully to the left, and his left eye is smaller

than his right-the flat side of his head is on the right. The

clinician said if the flat side was on his left it might not be

fixable.

leigh

Will 4/11/04

[Guest guest]

Hi,

Welcome to the group!

From what I understand, the terms " deformational " and " positional "

are interchangeable, since even the " positioning " of the baby in-

utero can cause the plagio to develop. So far, I haven't heard any

medical distinction between the two, but I clearly understand what

you are describing. We have many parents here whose baby was born

with flatness, so you'll find lots of like company. In many of

those cases, the flattening evident at birth provided a springboard

for additional plagio to develop after birth.

As far as I know, whether the plagiocephaly started in-utero or

developed after birth, or a combination of the two, the treatment

and treatment outcome expectations are the same. 3 weeks is not a

terribly long time to be in a Starband, so that may be the reason

you haven't seen much correction yet. Would you mind telling us how

old your daughter is? Younger babies have much more frequent growth

spurts, and usually receive faster correction, than older babies.

Maybe your daughter has a growth spurt due very soon and you'll see

some rounding and filling out of the flat areas shortly! I have

read that average band wear time is around 4 months.

Although my understanding of how helmets and bands correct

headshapes is somewhat rudimentary, I believe that once a dimension

is established, be it height or width of the head, it can't

be " squeezed " or " reduced " in dimension. However, the bands usually

hold onto these points as holding points, preventing further growth

in these areas, while redirecting all growth into the rest of the

headshape. They do a remarkable job of masking these dimension

worries by encouraging the headshape to fill out around them. Just

take a look at some of the before and after photos in the

photos/before and after folder!

Where are you going for your Starband? We have a very large and

active group, and perhaps someone else is going to the facility you

are going to and can give you some feeback on their experience

there. The Starband is an " active " band, except for a couple of

locations where the ortho modifies them to be " passive. " Is your

doctor overseeing the orthos work and deciding when the Starband use

should be stopped instead of your ortho?

Take care,

Christie (Mom to Repo'd Remy)

> My Daughter was born with this, not positional, and has a tall

crown

> height and a left plagio. Dr. wants to try the helmet for a

minimum

> of two months and decide from there what to do. We have had the

> Starband for 3 weeks with no changes. Dr. said since she was born

> this way it may not be possible to bring the crown height down?

Is

> anyone else dealing with a plagio like this that is not positional?

[Guest guest]

Hi and welcome to the group!

How old is your daughter? The age of a baby can determine how fast

you will see correction. The bands don't push a growth area back

into place. They encourage growth in other areas to help make it

more symmetrical. Where are you located? There are many members

here from all over the world, maybe one can help with personal

experience of treatment with the STARBand you are using. Did your

daughter have x-rays or a CT done before beginning treatment with

the band?

I'm sorry I have more questions than answers for you. I hope

someone here will be able to give you some sound information.

Dustie, mom to , DOCGrad'03

Dallas, Texas

> My Daughter was born with this, not positional, and has a tall

crown

> height and a left plagio. Dr. wants to try the helmet for a

minimum

> of two months and decide from there what to do. We have had the

> Starband for 3 weeks with no changes. Dr. said since she was born

> this way it may not be possible to bring the crown height down?

Is

> anyone else dealing with a plagio like this that is not positional?

[Guest guest]

> > My Daughter was born with this, not positional, and has a tall

> crown

> > height and a left plagio. Dr. wants to try the helmet for a

> minimum

> > of two months and decide from there what to do. We have had the

> > Starband for 3 weeks with no changes. Dr. said since she was

born

> > this way it may not be possible to bring the crown height down?

> Is

> > anyone else dealing with a plagio like this that is not

positional?

[Guest guest]

Hello,

My daughter was also born w/her plagio from her inutero

positioning. Plagio formed inutero is actually harder to correct

than plagio developed after the head has formed in a normal shape.

This is because the bones in the head would have actually grew into

this shape, rather than grew normally and then flattened by external

forces. My Hannah is basically round when you look at her from

above now, but from the front her head overall does still have a

slant, which I have been told is not correctable. You can see her

pics in the " Hannah B " folder. This link:

https://www.searsphotos.com/?shareid=S201042075lJ4T35WWMDX really

shows her overall head shape from the front after she finished her

second band. You can see how her left side above the ear is pretty

straight, but above the right ear her head has more of a slant. It

is very similar to the overall shape of her newborn hospital picture

in her folder. She was banded at 4.5 mos old as well and saw

substantial correction that first month. I would be concerned where

your daughter is that young and hasn't seen any correction. Do you

know how much experience your ortho has? Can you post any pictures

of your daughter both in her helmet and without? You can email them

to myself or if you have trouble posting them. Hopefully her

lack of progress is simply that her plagio was inutero and may take

longer to show correction. Do you think her band fits well?

, mom to Hannah (now 18 mos), DOCband #3 3/30

Cape Cod, Ma

>

>

> Hello,

>

> This has been a very busy last 3 weeks. My daughter's head came

out

> looking like this and has stayed the same shape since. We were

told

> that it would round out at her 2 week and 2 month check ups. He

> head size has completely fallen off the charts and she has no flat

> spots on her head. Her forhead starts slanting upward into a

> crown. It is not noticable from the front or the back, just the

> sides. I would like to send pictures, but a bit confused as how

to

> do this yet. We started the band at 4 1/2 months and she adjusted

> well after the first week. She has had x-rays and a CT Scan. The

> surgeon, doctor and orthotist all agree that since she was born

with

> this and it has continued to grow in this shape for almost 5

months,

> that it may take a while to see change. Being our 4th child and

no

> experience with this at all, we have some research to do. I thank

> you for responding. I am feeling more encourage.

>

> 's Mom

> > Hi,

> >

> > Welcome to the group!

> >

> > From what I understand, the terms " deformational "

and " positional "

> > are interchangeable, since even the " positioning " of the baby in-

> > utero can cause the plagio to develop. So far, I haven't heard

> any

> > medical distinction between the two, but I clearly understand

what

> > you are describing. We have many parents here whose baby was

born

> > with flatness, so you'll find lots of like company. In many of

> > those cases, the flattening evident at birth provided a

> springboard

> > for additional plagio to develop after birth.

> >

> > As far as I know, whether the plagiocephaly started in-utero or

> > developed after birth, or a combination of the two, the

treatment

> > and treatment outcome expectations are the same. 3 weeks is

not

> a

> > terribly long time to be in a Starband, so that may be the

reason

> > you haven't seen much correction yet. Would you mind telling us

> how

> > old your daughter is? Younger babies have much more frequent

> growth

> > spurts, and usually receive faster correction, than older

babies.

> > Maybe your daughter has a growth spurt due very soon and you'll

> see

> > some rounding and filling out of the flat areas shortly! I have

> > read that average band wear time is around 4 months.

> >

> > Although my understanding of how helmets and bands correct

> > headshapes is somewhat rudimentary, I believe that once a

> dimension

> > is established, be it height or width of the head, it can't

> > be " squeezed " or " reduced " in dimension. However, the bands

> usually

> > hold onto these points as holding points, preventing further

> growth

> > in these areas, while redirecting all growth into the rest of

the

> > headshape. They do a remarkable job of masking these dimension

> > worries by encouraging the headshape to fill out around them.

Just

> > take a look at some of the before and after photos in the

> > photos/before and after folder!

> >

> > Where are you going for your Starband? We have a very large and

> > active group, and perhaps someone else is going to the facility

> you

> > are going to and can give you some feeback on their experience

> > there. The Starband is an " active " band, except for a couple of

> > locations where the ortho modifies them to be " passive. " Is

your

> > doctor overseeing the orthos work and deciding when the Starband

> use

> > should be stopped instead of your ortho?

> >

> > Take care,

> >

> > Christie (Mom to Repo'd Remy)

> >

> >

> >

> > --- In Plagiocephaly , " dcrrhs " <dcrrhs@y...>

wrote:

> > > My Daughter was born with this, not positional, and has a tall

> > crown

> > > height and a left plagio. Dr. wants to try the helmet for a

> > minimum

> > > of two months and decide from there what to do. We have had

the

> > > Starband for 3 weeks with no changes. Dr. said since she was

> born

> > > this way it may not be possible to bring the crown height

down?

> > Is

> > > anyone else dealing with a plagio like this that is not

> positional?

[Guest guest]

> > > > My Daughter was born with this, not positional, and has a

tall

> > > crown

> > > > height and a left plagio. Dr. wants to try the helmet for a

> > > minimum

> > > > of two months and decide from there what to do. We have had

> the

> > > > Starband for 3 weeks with no changes. Dr. said since she

was

> > born

> > > > this way it may not be possible to bring the crown height

> down?

> > > Is

> > > > anyone else dealing with a plagio like this that is not

> > positional?

[Guest guest]

Hi ,

I checked out her pictures and is a cutie! Her band pattern

is very cute as well. I can definitely see shape you are concerned

about. I remember your saying she has xrays and a CTscan, so I'm

assuming she saw a specialist. WHat do they say about her lack of

progress. With a helmet, they can't actually " squish " in any

bulging parts, but instead they just hold the bulging areas and let

the rest of the head catch up. With the increased head height she

has, I would think she probably would need to be in a helmet for a

good amount of time to allow the rest of her head to catch up to the

height she has. Do you live near any Cranial Tech facilities

(www.cranialtech.com for locations)? I ask that b/c 's head

has an obvious tendency to grow upward and Cranial Tech is the only

company that makes helmets designed to help a specific headshape (if

you look on their website you'll notice that many have caps in

different areas and some don't have any at all, plus check out

D's helmet pic for another shape). The STARband like

wears only comes in that one shape, where Cranial Tech's DOCband

would be able to be custom made to her unique headshape. I would

think would benefit from a closed top in the back to keep her

head from gaining anymore height???

, mom to Hannah, DOCband #3 3/30

Cape Cod, Ma

> > > > > My Daughter was born with this, not positional, and has a

> tall

> > > > crown

> > > > > height and a left plagio. Dr. wants to try the helmet for

a

> > > > minimum

> > > > > of two months and decide from there what to do. We have

had

> > the

> > > > > Starband for 3 weeks with no changes. Dr. said since she

> was

> > > born

> > > > > this way it may not be possible to bring the crown height

> > down?

> > > > Is

> > > > > anyone else dealing with a plagio like this that is not

> > > positional?

[Guest guest]

> > > > > > My Daughter was born with this, not positional, and has

a

> > tall

> > > > > crown

> > > > > > height and a left plagio. Dr. wants to try the helmet

for

> a

> > > > > minimum

> > > > > > of two months and decide from there what to do. We have

> had

> > > the

> > > > > > Starband for 3 weeks with no changes. Dr. said since

she

> > was

> > > > born

> > > > > > this way it may not be possible to bring the crown

height

> > > down?

> > > > > Is

> > > > > > anyone else dealing with a plagio like this that is not

> > > > positional?

[Guest guest]

Hi :

I'm playing catch up here and see our has given you absolutely

wonderful advice and information thus far already. At just 5 mos of

age, frankly, you should be noticing correction by now. 's

growing at such a fast pace right now, she should be showing

correction. What specialists did you see for her CT scans and

Xrays? You're in South Dakota, is that anywhere near any of the

Cranial Tech clinics? I'm hardly trying to push you into their

product, but like replied, with your 's headshape as it

is, I too think she'd benefit more from a specially made band like

the DOCband can be. IF you would end up wanting a DOCband, you could

look into Angel Flight to fly you to your nearest clinic at no cost

for your appointments. Many members have used their services and I've

heard only wonderful things about them http://www.aircallall.org

With her in her current open topped STARband, I don't see how it

could be " holding " her head height which is what is in need of

correction. I'm definitely no professional here, but that's just my

parental feelings and for being around this group darn near 4 yrs

now.

I'd address this with your orthotist at next weeks appointment. I've

honestly never seen a headshape like 's before and I so hope you

can get good correction whatever product you use!!! She's truly a

beautiful little girl and I'm very happy her scans & xrays were all

ok.

My daughter was also born w/plagio began inutero, so as

replied, it's even more difficult to correct than positional

plagio..

Please do keep us posted. Does your STARband orthotist have the STAR

scanner?

Good luck!

Debbie

> > > > > > > My Daughter was born with this, not positional, and has

> a

> > > tall

> > > > > > crown

> > > > > > > height and a left plagio. Dr. wants to try the helmet

> for

> > a

> > > > > > minimum

> > > > > > > of two months and decide from there what to do. We

have

> > had

> > > > the

> > > > > > > Starband for 3 weeks with no changes. Dr. said since

> she

> > > was

> > > > > born

> > > > > > > this way it may not be possible to bring the crown

> height

> > > > down?

> > > > > > Is

> > > > > > > anyone else dealing with a plagio like this that is not

> > > > > positional?

[Guest guest]

Hi ,

I second everything Debbie and have already told you.

> > > > > > > > My Daughter was born with this, not positional, and

has

> > a

> > > > tall

> > > > > > > crown

> > > > > > > > height and a left plagio. Dr. wants to try the

helmet

> > for

> > > a

> > > > > > > minimum

> > > > > > > > of two months and decide from there what to do. We

> have

> > > had

> > > > > the

> > > > > > > > Starband for 3 weeks with no changes. Dr. said since

> > she

> > > > was

> > > > > > born

> > > > > > > > this way it may not be possible to bring the crown

> > height

> > > > > down?

> > > > > > > Is

> > > > > > > > anyone else dealing with a plagio like this that is

not

> > > > > > positional?