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

[Guest guest]

I agree,things are alot worse for many.

-- In Plagiocephaly@y..., " Joanne Hibble " <joanne@w...> wrote:

> I agree with your email in general, Kimberley. But as a mother of a

son

> with both plagiocephaly and a cleft lip, I must correct you.

>

> A cleft lip even in its simplest, without the extra complications of

> clefts of the palate, alveolar (gum) or submucosa, and even if it

is not

> a complete cleft into the nostril, is far from only cosmetic. In its

> absolute mildest forms it affects speech and feeding. More

complicated

> clefts can affect ear health, hearing, speech and feeding. A cleft

> requires surgery and other interventions over a number of years

> depending on severity (even the mildest requires a repair in

infancy and

> reworking as a young adult). A cleft will leave a scar for life

that can

> not be fixed with a band nor surgery.

>

> There are a lot of things a lot worse than a cleft lip. It is pretty

> mild in the big scheme of things. But how do you really feel that

> plagiocephaly rates. Yes it does affect children when left

untreated, it

> also affects parents whether treated or not. But it is not that

bad, it

> could have been craniosynostosis.

>

> And Debbie, yes it is like your son will have a poor hair cut for

the

> rest of his life .... this may be true. But my daughter is not even

7yo

> and her hair is falling out - big bald patches. And even in the

scheme

> of things there are children whose hair falls out and never grows

back,

> there are children who lose hair and more from cancer treatments.

>

> So don't be so upset with your lot. It isn't that bad. God tells us

to

> count our blessings and all the children and parents here have

plenty.

>

> Joanne

>

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

> From: kimberley.farrar@a...

> [mailto:kimberley.farrar@a...]

> Sent: Wednesday, 4 April 2001 2:43

> Plagiocephaly@y...

> Subject: Re: Thanks to those trying to get the word out

about

> plagio

>

>

> Congratulations , on having the courage to confront your

> pediatrician. I can understand how upset you must have been at her

> reaction. But, maybe somewhere in there, you struck a cord, and the

> next time she sees a small baby with a bit of a flattening, she may

> educate the parents on repositioning. Sure, she would never admit

to

> having a change of heart, but maybe...just maybe....

>

> One of the worst things to me about plagiocephaly is the way in

which

> parents are made to feel guilty. We are made to feel responsible

for

> it happening in the first place, adn then criticised as being

overly

> concerned about something people assume is simply cosmetic. Lots of

> things are cosmetic - cleft lips are for example, but parents of

> cleft babies are not criticised for seeking plastic surgery to

> correct it. What is more, there is evidence that plagio is more

than

> simply cosmetic.

>

> Congratulations on having won the fight for treatment - your son

will

> be grateful for it, and you should feel proud of what you have

> achieved. Good luck with the band.

>

> Kimberley

>

> (Mummy to Hope and Evan)

>

>

> > 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,

> >

>

>

>

>