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

[Guest guest]

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]

Hi,

One thing to try is alternative therapies. They may help, and I've

been told by our therapists that they are more effective if done before

the age of 2. There are many options. I would investigate osteopathy,

CST, and NCR. The key is an extremely competent therapist.

Best,

Kathy

afschisler wrote:

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.