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The only real problems besides having a very odd shaped head was for the

most part MENTAL. It caused such a self esteem issue. Try joining the

football team with this problem. You think you can fit a football helmet

on? NOT. That alone is enough to drive you insane. Even something as

simple as putting on a cap will never work. It simply will never fit right.

During my teens I grew my hair very long to hide my head. Long hair lead me

to become a some what of an outcast at school. But I turned that around by

becoming a huge rebel. In college I cut my hair and people noticed it right

away. Again very few would socialize because of it. I also had a very

difficult time with school as far as studying. I spent 6-10 hours a day

studying for classes. But I don't know if that is a result of this problem.

I did and do continue to have a problem with my shoulders. If you were to

look at me straight on you would find that one shoulder lays lower than the

other. But I do a lot of weight lifting and that seems to help. I do not

know if that has a relation however.

For myself I think I am very healthy. But recently I have discovered I may

have A.D.D. Again I don't know if that has a relation.

If nothing else the mental aspect is enough. Today I am fine after mentally

batteling with my self (why I am the way I am). I also am glad I had the

surgery. However the self esteem issues I had growing up will never leave

me. I continue to have self esteem issues and difficulties in socializing.

If you have any other questions, I will answer any of them.

e-mail me directly at

Scubaj357@...

S

Phoenix AZ

>From: " Niki " <niki_jay175@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: S

>Date: Mon, 12 Nov 2001 05:50:41 -0000

>

>,

>I hope you don't find this extrememly rude of me and I apologize if

>you do, but a lot of us parents wonder what kind of problems, if any,

>untreated plagiocephaly could cause. You said 'growing up with this

>problem is horrible', can you tell us why? Since plagio is

>considered a new epidemic since the back to sleep campaign, most of

>the plagio babies are still too young for the docotrs to be certain

>of what problems might lie ahead. If you wouldn't mind sharing some

>of your experiences with us, it would be greatly appreciated. Thank

>you in advance and take care.

>

>Niki

>Kaylie & Danny (STAR grads)

>Phila., PA

>

>

> >

> > You found the right group to ask guestions. you must do

>something. A band

> > or surgery are your choices. You dont want your child to end up

>like me.

> > Im a 27 year old that just had a surgery to help the problem.

>Growing up

> > with this problem is horrible.

> >

> > You are doing the right thing.

> >

> > >From: charla104@h...

> > >Reply-Plagiocephaly@y...

> > >Plagiocephaly@y...

> > >Subject: Concerned Newcomer

> > >Date: Mon, 12 Nov 2001 04:41:45 -0000

> > >

> > >Hello There! I have just today gotten information on this group

>and

> > >have spent the past two hours reading all kinds of information.

>My 9

> > >month old, Connor, is being casted for his DOC band on Tuesday the

> > >13th. I am more than a little nervous and wondering if we are

>doing

> > >the right thing. I have been to one Cranial Specialist and have

> > >another appointment on December 3 to see another (per my insurance

> > >requirements!) I have been reading through the arcives and have

>seen

> > >a lot of letters regarding negative experiences with the bands so

>now

> > >I am concerned. Have any of you been overly thrilled with your

> > >experience? Connor's plagio is mild to moderate and we have had

> > >people say that they don't even notice it at all. I guess I notice

> > >it most when he is in the bath tub with wet hair. He does have

> > >torticollis on the left side and is almost perfectly flat in the

>back

> > >of his head and to the right side of the back of his head. His

>right

> > >ear is about 1/2 to 1 inch in front of his left ear. I guess I

>just

> > >want to hear some positive feed back from the Bands. I have only

> > >spoke with one person who has had any experience with the band.

>Any

> > >insight would be GREATLY appreciated!!

> > >Thanks!

> > >Charla Brown

> > >

> > >

> >

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at

>http://explorer.msn.com/intl.asp

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

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,

Damn, dude. That was deep. It really hit home to me. My son (now

16mos.) and I flew back & forth to Cranial Tech every other weekend

from SF to Phoenix all summer long. The emotional trauma you went

through is one of the major issues almost ALL insurance companies

avoid. They say the cosmetic/emotional issues are so insignifican. If

they only knew.

Thank You. I truly appreciate you taking the time to share you very

personal life with us. I could ramble on at you and ask a ton more

questions but the only one that I'm sure most will want to know (so

I'll ask it for the 'public') is at what age did you have surgery and

what surgery did you have? (If you already answered this, I apologize

but I am just reading your post right now and didn't read any of the

previous posts. Sorry!)

& Maxwell

San Francisco

DOC Banded 5.16.01

Graduated 9.4.01

> The only real problems besides having a very odd shaped head was

for the

> most part MENTAL. It caused such a self esteem issue. Try

joining the

> football team with this problem. You think you can fit a football

helmet

> on? NOT. That alone is enough to drive you insane. Even

something as

> simple as putting on a cap will never work. It simply will never

fit right.

>

> During my teens I grew my hair very long to hide my head. Long

hair lead me

> to become a some what of an outcast at school. But I turned that

around by

> becoming a huge rebel. In college I cut my hair and people noticed

it right

> away. Again very few would socialize because of it. I also had a

very

> difficult time with school as far as studying. I spent 6-10 hours

a day

> studying for classes. But I don't know if that is a result of this

problem.

>

> I did and do continue to have a problem with my shoulders. If you

were to

> look at me straight on you would find that one shoulder lays lower

than the

> other. But I do a lot of weight lifting and that seems to help. I

do not

> know if that has a relation however.

>

> For myself I think I am very healthy. But recently I have

discovered I may

> have A.D.D. Again I don't know if that has a relation.

>

> If nothing else the mental aspect is enough. Today I am fine after

mentally

> batteling with my self (why I am the way I am). I also am glad I

had the

> surgery. However the self esteem issues I had growing up will

never leave

> me. I continue to have self esteem issues and difficulties in

socializing.

>

> If you have any other questions, I will answer any of them.

>

> e-mail me directly at

>

> Scubaj357@h...

>

> S

> Phoenix AZ

>

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, you've made me sad. Your story alone was

enough to make me feel 100% confident and glad that I

got my little Em's band!!! Thank you for your story.

In the long run, I didn't want Em to have the problem

of people noticing her little noggin being off if she

decided to have short hair. And of course her ears

also. Again, thank you for your story.

Kelli

__________________________________________________

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,

Thank you so much for sharing your story. I now feel alot better about

putting my daughter through the multiple castings and all the tests she had.

I hope things will get better for you now that you have had the surgery.

Always remember, it is what's on the inside that counts! If people are too darn

ignorant to be your friend, then maybe you would not want them to be your friend

anyway. Once again, Thank You!

Anne

mom of Livia

Canada

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