Re: Any experience with this?

[Guest guest]

Benny has facial asymmetry due to the torticollis and resulting

plagiocephaly, which by the way does not usually self-correct.

However, I believe there is somebody else on the list whose son has

another syndrome, and I can't remember the name of it. But it has the

facial problems on one side. If it wasn't this list it might have been

the sensory integration list, sorry my brain isn't working. But it

might just be the positional plagiocephaly from the torticollis, the

cranio-facial surgeon will know. I hope.

Peace,

Kathy E.

On Jul 20, 2004, at 12:14 AM, noodlesnpiemommy wrote:

> I figured if there would be anyone who may have some

> knowledge/experience with this it would be someone here:) Of course

> it just occured to me to ask.

> Aidan has facial asymmetry, it's on his left side-cheek is flatter, a

> little saggy, temple looks somewhat indented. We initially thought

> this was due to torticollis but his Neuro no longer thinks that, I

> was never convinced because his face didn't rest on his shoulder his

> head did & his head was only flat for a short time, but the drs said

> they were sure, it would self correct & I believed them. It seems

> like we have always gone from one problem to another with Aidan,

> first it was the Torticollis, then some slight developmental delays,

> then serious developmental delays, then a dx of Dyspraxia, now the

> Neuro thinks serious cognitive delays (I totally disagree, but I know

> why the Neuro thinks what he does) we are having more dev. testing

> done in December. I'm just waiting for something else. We are

> seeing a Carniofacial Surgeon next week to see what if anything can

> be done/is going on. The Neuro has told us that as Aidan grows his

> face will get worse, kind of like a tree that's not planted straight

> it will just keeping getting worse. His eye dr is the one who really

> pushed to get us to find out what is going on with the facial

> asymmetry she's VERY knowledgable in all areas not just the eyes so

> when she talks, I listen & we LOVE her.

> I can't help but wonder if in some way the facial asymmetry could

> have something to do with everything else. He had an MRI done at 8

> months old. I know it didn't include his brain stem but it was

> normal. Has anyone else delt with anything like this? Any ideas or

> insight?

> Thanks

>

>

>

>

>

>

>

[Guest guest]

I found the e-mail from the lady whose son had something like this, it

was on the other list. Her child has " Goldenhar syndrome. " That's

" hemifacial microsomia. " If you give me permission to forward your

post to her, you two could correspond about this.

Peace,

Kathy E.

On Jul 20, 2004, at 12:14 AM, noodlesnpiemommy wrote:

> I figured if there would be anyone who may have some

> knowledge/experience with this it would be someone here:) Of course

> it just occured to me to ask.

> Aidan has facial asymmetry, it's on his left side-cheek is flatter, a

> little saggy, temple looks somewhat indented. We initially thought

> this was due to torticollis but his Neuro no longer thinks that, I

> was never convinced because his face didn't rest on his shoulder his

> head did & his head was only flat for a short time, but the drs said

> they were sure, it would self correct & I believed them.

Retired--but my kids are working hard at

http://www.TheGroceryGame.com to save you money

and at http://www.heavenforanimals.com

to bring comfort when you lose a pet.

[Guest guest]

Thank You Kathy,

I would appreciate it if you would, if I can get any answers/help I

would be greatful.

>

> > I figured if there would be anyone who may have some

> > knowledge/experience with this it would be someone here:) Of

course

> > it just occured to me to ask.

> > Aidan has facial asymmetry, it's on his left side-cheek is

flatter, a

> > little saggy, temple looks somewhat indented. We initially

thought

> > this was due to torticollis but his Neuro no longer thinks that, I

> > was never convinced because his face didn't rest on his shoulder

his

> > head did & his head was only flat for a short time, but the drs

said

> > they were sure, it would self correct & I believed them.

> Retired--but my kids are working hard at

> http://www.TheGroceryGame.com to save you money

> and at http://www.heavenforanimals.com

> to bring comfort when you lose a pet.