Re: Thanks to those trying to get the word out about plagio

[Guest guest]

Dear Joanne,

I hope you dont feel that I was underestimating the impact of a cleft

lip, because I certainly didnt intend to. A friend of mine has a son

with a cleft, and I know how serious it can be, and that the

treatment for it is on a different level to simply wearing a band.

However, it was actually that friend who said to me that I should not

feel giulty about Hope wearing a helmet, because many things were

cosmetic, but nonetheless necessary, and she compared it in part to

her son's cleft. You're right about the additional aspects affecting

speech and eating though, and Im sorry if making a simple comparison

overlooked that.

I do indeed know how lucky we are to have been diagnosed with plagio

and nothing more serious, and I thank my lucky stars for it every

day. I dont mean to belittle the difficulties faced by those dealing

with other problems at all, and Im sorry if my post upset you for

that reason. Parents, and children, who deal with clefts deserve all

our admiration, and they certainly have mine.

Best wishes.

Kimberley

> > I am mom to a son with Plagio. He has been in a DOC band for 9

> weeks.

> > We started treatment at 7 months only because we persisted not

> > because of information or support by our pediatrician. Like many

of

> > the stories I have read on this board, our ped stated his

abnormal

> > head shape was only cosmetic and would round out in time. Also,

she

> > stated at 2 months old that it was the worst it would get. She

> never

> > told us that there was a name for positional head deformity or

the

> > importance of early treatment. She also never mentioned the

> > possibility of misalignment. In fact, the shape of his head did

> > worsen and a bulge started to appear over his ear.

> >

> > After doing research on my own I found statements that plagio is

> not

> > just cosmetic and believed to cause Migraines, TMJ, eyesight

> problems

> > and psychological consequences. After considering the

possibilities

> > of what could happen we decided that we were not willing to take

> that

> > chance. It was only after our insistence that we were referred to

a

> > specialist, an x-ray was done to rule out Craniosyntosis, and he

> was

> > casted for a band.

> >

> > I do understand that in some cases repositioning and time do help

> the

> > problem but what upsets me is that our pediatrician assumed that

> > would be case. As a result, I am left feeling mislead by our ped

> and

> > frustrated (as many of us are) that there is not enough education

> on

> > the complexities of plagiocephaly.

> >

> > Yesterday was the first time we had met with our ped since our

son

> > got his band. I shared my concerns about not being fully informed

> by

> > her about plagio during our initial visits and what head

> > abnormalities are believed to cause. I brought copies of the

> articles

> > and studies I found in CAPS & plagiocephaly.org as well as the

AAP

> > petition. Her reaction was very defensive and she expressed that

in

> > her 20 years of practicing she has never seen these problems. She

> > also questioned that since the high occurrence of plagio has only

> > recently become a problem, how can it be proved what it causes.

> > Additionally she felt that information on the internet is not

> > necessarily accurate.

> >

> > Needless to say I am feeling depressed and emotional. I actually

> > cried in her office. I only wanted to share my experience with

her

> in

> > hopes that she educates her patients on the complexities of

plagio.

> > Why are so many of us having to educate educate ourselves? I

> > appreciate all of you who are doing something to get the word

out.

> >

> > Regards,

> >

>

>

>

>