Re: Need support - and where do I find the older plagiocephaly kids group?

[Guest guest]

Did/does he have torticollis? Was the bossing always present?

>

> Is there a group for moms of toddlers/older children dealing with effects of

plagiocephaly? I think I've seen it referenced here, just checking.

>

> My son is 19 and a half months old. He was banded for 15 weeks last summer -

a Starband. He outgrew the band - it was starting to smash into one side of his

face - and they said he did not need another one. However - it's weird - as he

gets older (he got the band off at 10 months old) - I notice more and more his

facial asymmetry. His plag was classified as mild/moderate. I thought I was

doing everything right - had to fight to get him a helmet, made him wear it 23

hours every day, did everything I was told.

>

> I don't know if it's regression or wth, really. He still has noticeable

forehead bussing. And the side with the bussing - his whole face - is just more

" forward. " And now that eye is slightly lower than the other - and more

" forward. "

>

> I don't think anyone else notices. I know my husband doesn't. And I don't

point it out to him. But I do notice, and stare, from different angles, trying

to assess how prominent it is, every day. And it gives me a sick, anxious

feeling. I feel like the Starband did a really, really mediocre job - same for

his orthotist. He still has a flat spot in back too - basically a flat spot

with a lump where it started to round out. It's not noticeable though - even

with a short haircut. I don't even CARE about the back of his head anymore -

it's his face. I can't understand why his asymmetry is MORE noticeable now than

when he was a baby - and when his plag was worse.

>

> He is such a beautiful boy. I don't want him to have to deal with this. I

pray it " gets better " - or less noticeable as he grows - but again, so far it

seems to be getting worse, crazy as that may sound. Perhaps it's not - and it's

just me noticing it more, you know? I don't know. It's so upsetting. It's his

FACE. His eyes - one is slightly higher than the other (on the non-affected

side - as on that side his forehead goes " back " more - that eye is higher and

more off to the side.)

>

> If I showed you a pic you'd say he's beautiful - he IS. But he does have

these facial asymmetries. I am just really upset right now about the whole

thing.

>

> Thanks for reading. Any support welcome.

>

[Guest guest]

The group is olderplag

>

> Is there a group for moms of toddlers/older children dealing with effects of

plagiocephaly? I think I've seen it referenced here, just checking.

>

> My son is 19 and a half months old. He was banded for 15 weeks last summer -

a Starband. He outgrew the band - it was starting to smash into one side of his

face - and they said he did not need another one. However - it's weird - as he

gets older (he got the band off at 10 months old) - I notice more and more his

facial asymmetry. His plag was classified as mild/moderate. I thought I was

doing everything right - had to fight to get him a helmet, made him wear it 23

hours every day, did everything I was told.

>

> I don't know if it's regression or wth, really. He still has noticeable

forehead bussing. And the side with the bussing - his whole face - is just more

" forward. " And now that eye is slightly lower than the other - and more

" forward. "

>

> I don't think anyone else notices. I know my husband doesn't. And I don't

point it out to him. But I do notice, and stare, from different angles, trying

to assess how prominent it is, every day. And it gives me a sick, anxious

feeling. I feel like the Starband did a really, really mediocre job - same for

his orthotist. He still has a flat spot in back too - basically a flat spot

with a lump where it started to round out. It's not noticeable though - even

with a short haircut. I don't even CARE about the back of his head anymore -

it's his face. I can't understand why his asymmetry is MORE noticeable now than

when he was a baby - and when his plag was worse.

>

> He is such a beautiful boy. I don't want him to have to deal with this. I

pray it " gets better " - or less noticeable as he grows - but again, so far it

seems to be getting worse, crazy as that may sound. Perhaps it's not - and it's

just me noticing it more, you know? I don't know. It's so upsetting. It's his

FACE. His eyes - one is slightly higher than the other (on the non-affected

side - as on that side his forehead goes " back " more - that eye is higher and

more off to the side.)

>

> If I showed you a pic you'd say he's beautiful - he IS. But he does have

these facial asymmetries. I am just really upset right now about the whole

thing.

>

> Thanks for reading. Any support welcome.

>

[Guest guest]

He had mild tort - we never did PT - now I'm wondering if that's it. The

bossing (not bussing as I so goofily wrote earlier) was present - it's what

freaked me out in the first place - when he was around 4.5 months old I had him

in a front facing carrier - looked down - and noticed his forehead jutting out

more over one eye.

However - when he got his helmet off - in my mind - the bossing was.. gone. But

now I'm not sure, it may just be that the goose egg was gone - but the bossing

remained, if that makes sense.

It's hard to say - it's not really visible in photos - and I am pouring over

pics from when he first got helmet off and even mid-helmet - trying to determine

if it was there and I just didn't see it.

His eyes do appear more off to me now than they did in photos even during helmet

treatment - and right after.

I need to know more about these alternative therapies. I feel like I am going

crazy, ready to pull my hair out wondering where I went wrong.

> >

> > Is there a group for moms of toddlers/older children dealing with effects of

plagiocephaly? I think I've seen it referenced here, just checking.

> >

> > My son is 19 and a half months old. He was banded for 15 weeks last summer

- a Starband. He outgrew the band - it was starting to smash into one side of

his face - and they said he did not need another one. However - it's weird - as

he gets older (he got the band off at 10 months old) - I notice more and more

his facial asymmetry. His plag was classified as mild/moderate. I thought I

was doing everything right - had to fight to get him a helmet, made him wear it

23 hours every day, did everything I was told.

> >

> > I don't know if it's regression or wth, really. He still has noticeable

forehead bussing. And the side with the bussing - his whole face - is just more

" forward. " And now that eye is slightly lower than the other - and more

" forward. "

> >

> > I don't think anyone else notices. I know my husband doesn't. And I don't

point it out to him. But I do notice, and stare, from different angles, trying

to assess how prominent it is, every day. And it gives me a sick, anxious

feeling. I feel like the Starband did a really, really mediocre job - same for

his orthotist. He still has a flat spot in back too - basically a flat spot

with a lump where it started to round out. It's not noticeable though - even

with a short haircut. I don't even CARE about the back of his head anymore -

it's his face. I can't understand why his asymmetry is MORE noticeable now than

when he was a baby - and when his plag was worse.

> >

> > He is such a beautiful boy. I don't want him to have to deal with this. I

pray it " gets better " - or less noticeable as he grows - but again, so far it

seems to be getting worse, crazy as that may sound. Perhaps it's not - and it's

just me noticing it more, you know? I don't know. It's so upsetting. It's his

FACE. His eyes - one is slightly higher than the other (on the non-affected

side - as on that side his forehead goes " back " more - that eye is higher and

more off to the side.)

> >

> > If I showed you a pic you'd say he's beautiful - he IS. But he does have

these facial asymmetries. I am just really upset right now about the whole

thing.

> >

> > Thanks for reading. Any support welcome.

> >

>