Re: I'm new here!!

[Guest guest]

I'm not an expert but I have heard that surgery is the only way to

fix cranio then a helmet afterwards. I think that the DOC is the

only band that is FDA approved after surgery while others such as

the DOC band, Hanger, and Star Band are FDA approved pre-surgery. I

don't think a band will help without the surgery first. Plus, with

cranio, the head doesn't have the correct amount of room to grow

properly. Hopefully, another parent as some insight as my child

only had plagio no cranio or tort.

>

> I'm a newbie. My son Garret is 9mths old. He has craniosynosis

of

> the right coronal suture. We talked to a plastic surgeon and he

> told us that surgery was the only way to correct that, but that

all

> it would fix would be the shallow eye socket. We don't even pay

> attention to that it just kind of looks like one is lazy. The

thing

> we have always noticed was his head shape. They told us that

> surgery would not correct that we would have to wear a helment for

> that. So we opted to try the helment to fix the shape of his head

> and keep an watch on his eye to see if it was going to progress

> (they didn't think it would). We are okay with his eye and if it

> doesn't get worse don't want to put him through surgery to correct

> something sooo minor. It just would feel like having a nose job

> done on my baby because someone said it was big. I'm going to try

> to post some pics so you all can tell me your opinion. He's ours

so

> of course we think he's gorgeous, but I don't want him looking

funny

> and me being blinded and him to be made fun of later. I would

like

> to know how bad you think it is.

>

> And has anyone else been through this?

>

> Oh yeah we got our starband yesterday. When I finish painting I

> will post pics of it too.

>

> Thanks

>

[Guest guest]

One more thought, the reason why they probably thought that his head

shape wouldn't progress for the better is that his head does not

have room to grow properly without the surgery first. I am also

surprised that they would band a child that has cranio. I don't

want to sound negative but just from everything I've read that

surprises me.

Good luck in this process.

> >

> > I'm a newbie. My son Garret is 9mths old. He has craniosynosis

> of

> > the right coronal suture. We talked to a plastic surgeon and he

> > told us that surgery was the only way to correct that, but that

> all

> > it would fix would be the shallow eye socket. We don't even pay

> > attention to that it just kind of looks like one is lazy. The

> thing

> > we have always noticed was his head shape. They told us that

> > surgery would not correct that we would have to wear a helment

for

> > that. So we opted to try the helment to fix the shape of his

head

> > and keep an watch on his eye to see if it was going to progress

> > (they didn't think it would). We are okay with his eye and if

it

> > doesn't get worse don't want to put him through surgery to

correct

> > something sooo minor. It just would feel like having a nose job

> > done on my baby because someone said it was big. I'm going to

try

> > to post some pics so you all can tell me your opinion. He's

ours

> so

> > of course we think he's gorgeous, but I don't want him looking

> funny

> > and me being blinded and him to be made fun of later. I would

> like

> > to know how bad you think it is.

> >

> > And has anyone else been through this?

> >

> > Oh yeah we got our starband yesterday. When I finish painting I

> > will post pics of it too.

> >

> > Thanks

> >

>

[Guest guest]

Hi Newbie and welcome to the group. I think i would try to get a

second opinion about your son's head and prospects for improvement. it

is the case that they cannot always tell the extent of the fusion of

sutures easily. perhaps there is not much fusion and the brain growth

is not restricted (which is the main concern with cranio vs. just head

shape). however, you want to make sure you are doing everything you

can for your son, and your doctor's explanation doesn't sound great to

me (I " m not a doc or medical professional).

also although it just looks like your son has " lazy eye " right now,

what will happen in the future? I think it would be important to

understand this too.

I hope the band does correct his head shape. my daughter had brachy

(flat in back) and did great with her starband.

-christine

sydney 16 mo starband grad.

>

> I'm a newbie. My son Garret is 9mths old. He has craniosynosis of

> the right coronal suture. We talked to a plastic surgeon and he

> told us that surgery was the only way to correct that, but that all

> it would fix would be the shallow eye socket. We don't even pay

> attention to that it just kind of looks like one is lazy. The thing

> we have always noticed was his head shape. They told us that

> surgery would not correct that we would have to wear a helment for

> that. So we opted to try the helment to fix the shape of his head

> and keep an watch on his eye to see if it was going to progress

> (they didn't think it would). We are okay with his eye and if it

> doesn't get worse don't want to put him through surgery to correct

> something sooo minor. It just would feel like having a nose job

> done on my baby because someone said it was big. I'm going to try

> to post some pics so you all can tell me your opinion. He's ours so

> of course we think he's gorgeous, but I don't want him looking funny

> and me being blinded and him to be made fun of later. I would like

> to know how bad you think it is.

>

> And has anyone else been through this?

>

> Oh yeah we got our starband yesterday. When I finish painting I

> will post pics of it too.

>

> Thanks

>

[Guest guest]

--Thanks for everyones feedback. We are just going to try the

helment for a while and kinda watch his eye they were fairly certain

it wouldn't get any worse, but if it does we will be going ahead

wiht surgery. We are just trying to exhaust all other (non-

invasive) options first we have about 1 year to decide on surgery,

and we will be out of the helment before then. Thanks again.

- In Plagiocephaly , " christineashok "

<christineashok@...> wrote:

>

> Hi Newbie and welcome to the group. I think i would try to get a

> second opinion about your son's head and prospects for

improvement. it

> is the case that they cannot always tell the extent of the fusion

of

> sutures easily. perhaps there is not much fusion and the brain

growth

> is not restricted (which is the main concern with cranio vs. just

head

> shape). however, you want to make sure you are doing everything you

> can for your son, and your doctor's explanation doesn't sound

great to

> me (I " m not a doc or medical professional).

>

> also although it just looks like your son has " lazy eye " right now,

> what will happen in the future? I think it would be important to

> understand this too.

>

> I hope the band does correct his head shape. my daughter had brachy

> (flat in back) and did great with her starband.

> -christine

> sydney 16 mo starband grad.

>

>

>

> >

> > I'm a newbie. My son Garret is 9mths old. He has craniosynosis

of

> > the right coronal suture. We talked to a plastic surgeon and he

> > told us that surgery was the only way to correct that, but that

all

> > it would fix would be the shallow eye socket. We don't even pay

> > attention to that it just kind of looks like one is lazy. The

thing

> > we have always noticed was his head shape. They told us that

> > surgery would not correct that we would have to wear a helment

for

> > that. So we opted to try the helment to fix the shape of his

head

> > and keep an watch on his eye to see if it was going to progress

> > (they didn't think it would). We are okay with his eye and if

it

> > doesn't get worse don't want to put him through surgery to

correct

> > something sooo minor. It just would feel like having a nose job

> > done on my baby because someone said it was big. I'm going to

try

> > to post some pics so you all can tell me your opinion. He's

ours so

> > of course we think he's gorgeous, but I don't want him looking

funny

> > and me being blinded and him to be made fun of later. I would

like

> > to know how bad you think it is.

> >

> > And has anyone else been through this?

> >

> > Oh yeah we got our starband yesterday. When I finish painting I

> > will post pics of it too.

> >

> > Thanks

> >

>

[Guest guest]

Hello. I'm glad that Cohen is doing well in his band.

do NOT feel like you are a horrible Mother! There is such a lack of

information and education out there to help people to prevent

plagiocephaly. It is not your fault. We found out about our

Daughter's plagio early on (about 7 or 8 weeks old), but even with

repositioning and doing everything we could, she still needed to get

a band. Often times there is nothing different that could have

done. You are a WOnDERFUl mother for doing this for him and getting

him a band to fix his headshape now while you are able.

Good luck and keep us updated.

Jen

(almost 3 yrs), tort resolved, Hanger Band Grad

(5 1/2 years)

>

> Hello everyone. My name is (I see there is also another

> here with her name spelled the same way!!). I am a 29 year old stay

> at home mom to 9 1/2 month old twin boys, Cohen and Ethan. Just

this

> Friday we got the Starband from Hanger for Cohen. It was a

difficult

> decision to make but we finally decided to go ahead with it. He

seems

> to fairing OK so far. I don't know how DOC does it but with the

> Starband he starts off wearing it 1 hour a day alternating it on and

> off and does not sleep in it. Now we are on day 4 and he will wear

it

> 4 hours on and 1 off and has to wear it for naps and for sleeping at

> night. On Friday it will be his first full day of wearing it 23

hours

> a day.

>

> Anyways, I am feeling like a horrible mother right now because he

has

> to wear it. We have tried everything so that he wouldn't have to

wear

> the band but it just didn't work. I am just here for support from

all

> of you who's children wear a band and also to ask questions as the

> days go on.

>

> I'm so glad I found you guys!!

>

> Thanks,

> W.

>

[Guest guest]

Helle there. I have 12 month old twins that both have to wear

helmets. I felt like a horrible mother at first too. But after

reading articles on the internet. I found that this is common in

twins. So that made me feel better about things.

Mom to Gwenith & Gilbert

12 months old

P.A.P 1/06/07

Graduated 06/07/07 but back in them again 06/28/07

>

> Hello everyone. My name is (I see there is also another

> here with her name spelled the same way!!). I am a 29 year old stay

> at home mom to 9 1/2 month old twin boys, Cohen and Ethan. Just

this

> Friday we got the Starband from Hanger for Cohen. It was a

difficult

> decision to make but we finally decided to go ahead with it. He

seems

> to fairing OK so far. I don't know how DOC does it but with the

> Starband he starts off wearing it 1 hour a day alternating it on and

> off and does not sleep in it. Now we are on day 4 and he will wear

it

> 4 hours on and 1 off and has to wear it for naps and for sleeping at

> night. On Friday it will be his first full day of wearing it 23

hours

> a day.

>

> Anyways, I am feeling like a horrible mother right now because he

has

> to wear it. We have tried everything so that he wouldn't have to

wear

> the band but it just didn't work. I am just here for support from

all

> of you who's children wear a band and also to ask questions as the

> days go on.

>

> I'm so glad I found you guys!!

>

> Thanks,

> W.

>