helmet story

[Guest guest]

,

Maybe the word " secret " isn't quite accurate, but what I meant is

that it was very hard to find an expert on plagio. In our case this

was Dr. in Adeliade.

It just felt like the experts are kept as a secret by Ped's and GP's

because none of them referred us to Dr.. Thats what I hope to

change.

In fact, I only found out about Dr. through this group when

someone asked if I'd seen him yet. I couldn't beleive it when I found

out Dr. actually lives in Adelaide as well!

Like you said, the key is education of Ped's and GP's, this will

ensure that parents either get the information they need or get

referred to the correct people to start with.

Simon

> > > > Simon:

> > > > I would be very interested in seeing this report. If you

> would

> > > like to send it to my private email, please do!

> > > > p-nutsmum@s...

> > > > Thanx!

> > > > Kendra in Canada

> > > > www.plagiocephaly.org/support/

> > > > Plagiocephaly/join

> > > > http://geocities.com/kendraandhanna/

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

> > > > From: classic_celica@y...

> > > > Plagiocephaly@y...

> > > > Sent: Saturday, September 08, 2001 11:11 PM

> > > > Subject: Re: helmet story

> > > >

> > > >

> > > > nna,

> > > > Fair enough but don't you think people searching the net

> for

> > info

> > > > will find this information misleading?? Thats is my point.

> > > >

> > > > I think you have missed my point altogether. I agree that

> > > awareness

> > > > needs to be raised to ensure that kids with cranio are

> > detected

> > > early

> > > > and receive quick treatment. Thats the whole point behind

> the

> > > push to

> > > > have Peds and GP's made more aware of plagio.

> > > >

> > > > Also I agree that deformation plagio will NEVER round out

> > > perfectly.

> > > > That is a fact.

> > > > However, I have a report from Dr. about several kids

> > that

> > > have

> > > > moderate plagio. The report clearly illustrates the

effect

> of

> > > > deformational plagio over a long period of time. The

> pictures

> > of

> > > > these kids heads that have been taken from a baby up

until

> > they

> > > are

> > > > around 10 years old. These pictures do in fact show that

> > although

> > > the

> > > > head isn't ever going to be " perfect " it will get to a

> point

> > > where it

> > > > is barely noticeable and therefore one needs to question

> the

> > use

> > > of

> > > > helmets for mild to moderate plagio.

> > > >

> > > > I don't want to argue with you over the use of helmets.

The

> > main

> > > > thing is that as parents we have enough information so we

> > feel we

> > > > have made the right desicion for our kids. In Jades case

I

> am

> > > happy

> > > > to let time look after her plagio. No doubt every case is

> > > different

> > > > and the use of helmets etc etc is personal choice.

> > > >

> > > > Finally, the logic your referring to again is about

making

> an

> > > > informed desicion by both doctors and parents. Visting

> > doctors

> > > that

> > > > know and understand plagio is critical. But the story is

> > talking

> > > > about deformation plagio and saying that it needs urgent

> > > attention. I

> > > > don't agree with that. Cranio on the other hand does need

> > urgent

> > > > attention.

> > > > The urgency in terms of deformational plagio is only to

> > ensure

> > > that

> > > > you as a parent can decide whether to band or not befoer

> its

> > too

> > > late.

> > > >

> > > > I have a report here that has some very good information

> and

> > > pictures

> > > > of kids with plagio and the long term affects of plagio.

I

> am

> > > > thinking of making a web site and putting it on line to

> help

> > > others.

> > > >

> > > > Simon

> > > > Adelaide, Australia

> > > >

> > > > To fully

> > > > > understand the context you would need to see the

program

> > not

> > > just

> > > > read the

> > > > > web page!!!!

> > > > > And one other thing - (please don't take this as an

> > attack)

> > > BUT

> > > > plagio does

> > > > > require urgent attention - it was confirmed to me today

> by

> > 6

> > > > different Dr's

> > > > > that my daughters condition will NEVER!!!! round out

on

> > its

> > > own or

> > > > look

> > > > > normal -

> > > > > The other thing is if parents do not have their

childrens

> > flat

> > > > heads looked

> > > > > at early - how on God's earth will they ever be

diagnosed

> > early

> > > > enough if it

> > > > > is Cranio. Just food for thought really and logic!

> > > > >

> > > > > Regards

> > > > > nna

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Oh ,

That's a funny story - I can't believe the guy was a

pediatrician!!! I wish you had been able to unload on someone more

appropriate. I am so sorry about the stares, comments, and what-

not. The T-shirt is a great idea. I'm sure that even though those

people were rude, Jack will have helped another baby out there...

I'm trying to remember what I've read about the Fit-well; it's a

clear helmet, correct? Are you able to decorate it, or do they need

the surface clear of stickers, paint, etc.? Do they make

adjustments to the Fit-well and how do they make the adjustments?

It has been a while since we've had any Fit-Wellers active in the

group, and I could use a refresher on their protocol.

Take care,

Christie (Mom to Repo'd Remy)

--- In Plagiocephaly , " minoura89 " <minoura89@y...>

wrote:

>

> Just thought I'd share this. We've had the Fit-Well helmet for

about

> a month now, but I haven't really had many staring problems.

> Occasionally I'll notice someone looking, and sometimes people ask

> what it's for. On Sunday, I took Jack to Costco with me. I hate

> going there because here in Utah, it is always crowded, and people

are

> incredibly rude. I constantly have people knocking into me,etc.

So

> by the end of my trip I am usually a little cranky. I think it is

the

> first time we've been since Jack got the helmet, and I am not

kidding,

> every single person stared. I saw one girl whisper to her mom then

> when we passed, I could see them turn to look. Another family were

> whispering, " don't look, don't look " By the time I got to the

> checkout, I was pissed off. Then this guy in line behind me is

> staring intently at Jack. I turned around and snapped, " it's to

make

> his head round " . The man says, " I know, I'm a pediatrician. " I

felt

> like such a jerk and apologized for being snippy. He had not seen

> this particular helmet and was asking me questions about it, and

who

> had done Jack's surgery, etc. My husband and I have decided to get

> Jack a t-shirt that says " take a picture, it'll last longer "

>

>

> mum to Jack, sagittal surgery (1/13/05), Fit-Well helmet to correct

> small flat spot on his right side.