Re: what is the outcome in adulthood

[Guest guest]

Thanks for the reply.

I am 38 years old and my Mom has told me that as a baby both I and my brother were "swaddled", ie wrapt in blankets to stop us moving around too much, and she put us to sleep on our sides BUT she swapped us from side to side as she says if babys were left on one side too much they had flat heads on that side !!!!!!

Sounds like plagio type symptoms to me and thats nearly 40 years ago.

If she is right, there must have been Moms that did not swap their babies sleeping sides and if they knew the problems about sleeping in one spot that long ago why oh why didn't the medical profession warn us new parents.

I asked my Mom why she did not say anything earlier and she said that a) all the advice now is to sleep on backs so she didn't want to interfere and until we pointed out s flat spot she hadn't noticed it. I can understand this as it seems that most parents like ourselves do not acually notice the problem until it is quite severe.

For example I told our hairdresser about our problems (she has a 10 month old child and is very very protective over him) and she had not heard of plagio, BUT a week later she called to tell us that she had checked her son and the back of his head is markedly flat - she had never noticed - and is now making an appointment to see her doctor too.

I assume you are in the US so maybe the sleeping advice when you were a baby was different to ours, or my Moms anyway, but it is interesting don't you think.

As you may be able to guess, I am desperately looking for a light at the end of the tunnel.

Thanks again for the reply, let me know if you have any more thoughts.

Best Wishes

Rob

[Guest guest]

Rob-

I look at heads all the time too! Remember when you are analyzing

adult heads, that we were tummy sleepers, so may throw things off a

bit!

I went to college with someone who had severe plagiocephaly and

torticollis. His head was anything but normal! Of course you

don't really know who had a problem and it self corrected unless you

went around asking.

I am pasting a post from a few months back that is really

interesting. I emailed a few times as he was willing to help

me with my insurance battle. His body rejected the implant.

Dane's mom DOC Grad

Here it is:

I am just turned 27 years old and I just had the surgery on July 30

2001. I

actually flew back and forth from Phoenix to San Diego to see my

specialist.

At my age all that could be done was to fabricate an implant that

would

make my head look more normal. So Basically the surgeon made a nice

6 inch

incision in the back of my head. Then he attached the implant with

screws

that went in to my skull. If I feel my head I can feel the implant.

They

say it will take a while to settle. All I can say is I can now put

on a

cap, and IT FITS!

You cant imagine waiting 27 years to finally wear a baseball cap.

I am open to any and all questions.

By the way you can tell your insurence boys to call me. I will get

in the

ring with them.

>From: " DangerLeigh's Mommy " <dangerleigh@...>

>Reply-Plagiocephaly

>Plagiocephaly

>Subject: Re: S

>Date: Tue, 13 Nov 2001 04:12:57 -0000

>

>,

>

>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

> >

[Guest guest]

Hi Rob,

One of the reasons we don't see plagio all that much in adults is

because we were all stomach sleepers. The back to sleep campaign

didn't start until 1992. Before then, plagio occurred in 1 in 300

births. Today it is 1 in 60 births.

There are ramifications of not treating plagio, this was taken off of

the internet, I pasted it as I can't seem to find the correct link

to it.

Uncorrected plagiocephaly/brachycephaly has been linked to

respiratory and vision problems, migraine headaches, difficulty

chewing, TMJ syndrome, as well as severe psychological consequences.

Additionally, the American Whole Health Library notes that, " …as the

number of cranial strain patterns increased, so did incidence of

middle ear infections. " 3 All these factors can lead to an increase

in the need for medical treatment and hospitalization in the long run.

3 ANON., CRANIAL DYSFUNCTION IN OTITIS MEDIA,

http://americanwholehealth.com/whlibrary/osteopathy/do006.htm. 12

August 2001.

> Can anybody help?

>

> Most doctors we have seen so far tell us that plagio tends to

correct

> itself and is not noticeable in adulthood, without treatment.

>

> Is this right??????

>

> Since we became aware of the condition I have studied peoples heads

> (without trying to appear too rude) and whilst there are many

> different shaped heads I must say I have not seen any particularly

> plagio heads, certainly to the extent of our 16 month old sons or

> some of the pictures I have seen on the web.

>

> I would be grateful for everyones thoughts.

>

> Rob

[Guest guest]

Rob,

My husband is 39 yrs old, his mother put him to sleep on the same

side every night when he was a baby because he would fall asleep

while she was feeding him.

His ped noticed his head was becoming flat so she was told to switch

sleeping positions and use a rolled up towel to keep him off the

flat spot.

His head never fully corrected itself. His face is assymetrical and

I think that his sinus issues are at least partly to blame because

of it. His nose looks like it is smashed to one side.

Now don't get me wrong, I love him and think my husband is good

looking, unfortantely others do not and I have even had people

asked " how did he get such good looking sisters? "

People are mean. so I decided I was going to do everything I could

for . Life is hard enough.

Repositioning is working for . She is 6 months and we have

been working on it since she was 13 weeks. She still has a small

flat spot in the back and her right is just a little forward. I am

still repositioning and hoping to see continued improvement.

has tort and sit is not able to sit up. She is close to sitting up

and I know that will help get more pressure off the back of the head.

Also, my ped says that the brain at 6 months starts to make contact

with the skull and starts to help shape the head. This I have never

seen in writing or heard anywhere else. It would be nice if someone

could confirm this.

Thanks

Heidi - mom to 7, 4(verbal apraxia, DSI), 6

months (tort/plagio & vur)

> Can anybody help?

>

> Most doctors we have seen so far tell us that plagio tends to

correct

> itself and is not noticeable in adulthood, without treatment.

>

> Is this right??????

>

> Since we became aware of the condition I have studied peoples

heads

> (without trying to appear too rude) and whilst there are many

> different shaped heads I must say I have not seen any particularly

> plagio heads, certainly to the extent of our 16 month old sons or

> some of the pictures I have seen on the web.

>

> I would be grateful for everyones thoughts.

>

> Rob

[Guest guest]

Also, my ped says that the brain at 6 months starts to make contact

with the skull and starts to help shape the head. This I have never

seen in writing or heard anywhere else. It would be nice if someone

could confirm this.

Heidi,

That really got me curious! So I've been searching the internet.

This is what I found: The brain and spinal cord are covered by a

tough, translucent membrane, called the dura matter. Cerebrospinal

fluid (CSF) is a clear, watery liquid that surrounds the brain and

spinal cord, and is also found throughout the ventricle (brain

cavities and tunnels). CSF cushions the brain and spinal cord from

jolts.

The cranium (the top of the skull) surrounds and protects the brain.

The spinal cord is surrounded by vertebrae (hollow spinal bones).

Also, some muscles serve to pad and support the spine.

It was taken from:

http://www.enchantedlearning.com/subjects/anatomy/brain/index.shtml

So I'm thinking, that the brain and the skull never actually make

contact in the back or sides of the head. Where plagio occurs. If you

can, please ask your ped if there is an article that we can read,

explaining what he/she means. I'd really be interested in reading it.

Thanks,

> > Can anybody help?

> >

> > Most doctors we have seen so far tell us that plagio tends to

> correct

> > itself and is not noticeable in adulthood, without treatment.

> >

> > Is this right??????

> >

> > Since we became aware of the condition I have studied peoples

> heads

> > (without trying to appear too rude) and whilst there are many

> > different shaped heads I must say I have not seen any

particularly

> > plagio heads, certainly to the extent of our 16 month old sons or

> > some of the pictures I have seen on the web.

> >

> > I would be grateful for everyones thoughts.

> >

> > Rob