head shape

[Guest guest]

Hi !

My son ph has a flat side where he favored to rest his head after open

heart at five days old. We have been part of a cranio-facial clinic since the

start, due to a cleft lip and palate, and his surgeon and nurse practitioner

agree that in his case, it is an issue of esthetics. Funny, people notice

that before the trach!!! I had brought it up to his doctor because

I had seen a bit on the " Today Show " about parents leaving their babies in

car seats, swings, bouncy chairs,ect.,too long ,and it causing the skull to

have this flat spot, and in turn, learning disabilities. I got the impression

that the doctor believed the learning issues came from the style of parenting

and attention , which made me feel even worse because in hind sight, I , mom,

should have moved him more. It is great to be part of the medical decisions,

but it's really hard to make the choice. I hope the best for you and your

son.Gwendelyn

[Guest guest]

Hi Everyone,

I want to ask a question... Have any of you chosen to have reconstruction done

on your CHARGEr's head for extreme plagiocephaly (different head shape)? The

helmet did absolutely nothing for us at 6months-1year. Now, Isaac is 5 and has

had over 40 surgeries for different things. I am not sure this is the best

choice for us, but who better to ask? Anyone out there have a story? Thank you

so much!

Francis

mom to Isaac (charge), 5

---------------------------------

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

,

To be honest, I have no experience with plagiocephaly. Kennedy's head is

different at the top, near the back, there's a mashed in part but it's not

overly noticeable at all...

Good luck, hope you find some other parents who've experienced it or know

more!

Mom to Kennedy 8 (CHARGE), 17, 15, and wife to Graeme

New Brunswick, Canada

http://www.chargesyndrome.info

>

> Hi Everyone,

> I want to ask a question... Have any of you chosen to have reconstruction

> done on your CHARGEr's head for extreme plagiocephaly (different head

> shape)? The helmet did absolutely nothing for us at 6months-1year. Now,

> Isaac is 5 and has had over 40 surgeries for different things. I am not sure

> this is the best choice for us, but who better to ask? Anyone out there

> have a story? Thank you so much!

>

> Francis

> mom to Isaac (charge), 5

>

>

> ---------------------------------

> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

> starting at 1¢/min.

>

>

[Guest guest]

I sometimes look at Eva and notice she had a large flat forhead and

a flat nose but no one has ever talked to me about it. I would

really sit down with the doctors and way the pros and cons. Good

luck hun!!

Crystal mom to (10), (3), and Eva (16 month CHARGEr)

wife to Dan

>

> Hi Everyone,

> I want to ask a question... Have any of you chosen to have

reconstruction done on your CHARGEr's head for extreme plagiocephaly

(different head shape)? The helmet did absolutely nothing for us at

6months-1year. Now, Isaac is 5 and has had over 40 surgeries for

different things. I am not sure this is the best choice for us, but

who better to ask? Anyone out there have a story? Thank you so

much!

>

> Francis

> mom to Isaac (charge), 5

>

>

> ---------------------------------

> Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

>

[Guest guest]

I cant wear adult sized sun hats and even the kid size fit weird. Same with

visors. I can only wear baseball caps. Speaking of wich... anyone know how i

can get a new Australia conference baseball cap? My old one got chewed up by

the washing mashine and i need a new one cause I wear it when i go outside.

Chantelle

--

My spelling's kinda wobbly. It's good spelling but the letters wobble and

end up in the wrong places. - Winnie the Pooh

[Guest guest]

Hi Gwendelyn!

Thanks for the insight. Isaac's craniofacial doc said that a lot of CHARGE

kids have different head shapes and the surgery would be purely cosmetic. He

feels (and so does the geneticist) that his brain will develope just fine and

not to worry as far as " making things worse. " I just wanted to know if anyone

has done it since it is a big deal.

I totaly hear you about people noticing his head before the trach! My favorite

is when people who have never seen a trach ask me if this is how he eats! I just

smile politely and say no (maybe I'll show them his g-tube ). But it is funny

when you know how backward the thought is! Thanks for the info- I appreciated it

a lot!

mom to Isaac 5

joedelynchloejo@... wrote:

Hi !

My son ph has a flat side where he favored to rest his head after open

heart at five days old. We have been part of a cranio-facial clinic since the

start, due to a cleft lip and palate, and his surgeon and nurse practitioner

agree that in his case, it is an issue of esthetics. Funny, people notice

that before the trach!!! I had brought it up to his doctor because

I had seen a bit on the " Today Show " about parents leaving their babies in

car seats, swings, bouncy chairs,ect.,too long ,and it causing the skull to

have this flat spot, and in turn, learning disabilities. I got the impression

that the doctor believed the learning issues came from the style of parenting

and attention , which made me feel even worse because in hind sight, I , mom,

should have moved him more. It is great to be part of the medical decisions,

but it's really hard to make the choice. I hope the best for you and your

son.Gwendelyn

[Guest guest]

LOL you should start on a charge session then lol

>

> Hi Gwendelyn!

> Thanks for the insight. Isaac's craniofacial doc said that a lot of CHARGE

> kids have different head shapes and the surgery would be purely cosmetic. He

> feels (and so does the geneticist) that his brain will develope just fine

> and not to worry as far as " making things worse. " I just wanted to know if

> anyone has done it since it is a big deal.

> I totaly hear you about people noticing his head before the trach! My

> favorite is when people who have never seen a trach ask me if this is how he

> eats! I just smile politely and say no (maybe I'll show them his g-tube ).

> But it is funny when you know how backward the thought is! Thanks for the

> info- I appreciated it a lot!

>

> mom to Isaac 5

>

>

> joedelynchloejo@... <joedelynchloejo%40aol.com> wrote:

> Hi !

> My son ph has a flat side where he favored to rest his head after open

>

> heart at five days old. We have been part of a cranio-facial clinic since

> the

> start, due to a cleft lip and palate, and his surgeon and nurse

> practitioner

> agree that in his case, it is an issue of esthetics. Funny, people notice

> that before the trach!!! I had brought it up to his doctor because

> I had seen a bit on the " Today Show " about parents leaving their babies in

>

> car seats, swings, bouncy chairs,ect.,too long ,and it causing the skull

> to

> have this flat spot, and in turn, learning disabilities. I got the

> impression

> that the doctor believed the learning issues came from the style of

> parenting

> and attention , which made me feel even worse because in hind sight, I ,

> mom,

> should have moved him more. It is great to be part of the medical

> decisions,

> but it's really hard to make the choice. I hope the best for you and your

> son.Gwendelyn

>

>