Re: Kaitlyn is done with treatment

[Guest guest]

Hi Naomi,

She looks a lot like my son, but more severe and the opposite side.

He's even got the same pear shape to his head from top down on one

side. (I posted a picture of him in the mirror at 11 months under A

babies under A. I couldn't get him to look head on, so it's

not very good.) In my son the whole left side of his face is lower

than the right. (He has left side tort.) Unfortunately, I don't

know how much of his issues are the tort and how much were a bad

fitting first STARband. If she's already in PT they probably would

have caught the tort, but it wouldn't hurt to ask them to look

specifically. My son also has a lot of other issues/birth defects

(not related to the tort/plagio) that I think side-tracked the

doctors in diagnosing his 'plain old' tort. (He has hypospadias, a

heart murmur, feeding issues, etc.) The cranio facial specialist we

saw told us that the body 'wants' to be in alignment and that once

the cause of the deformity (in our case the tort) was resolved he

should improve. Which he has. He also told us that the facial

bones continue to grow even after the skull slows down at 2 years,

so hopefully there is a chance your daughter will continue to

improve. I would just keep up the PT to help her right side keep up

with her left side. Without PT for a year my son developed a lot of

other side effects. His whole body is torqued and all of his

motions are asymmetrical. He's almost 17 months and nowhere near

walking. It's funny you mention Cerebral Palsy because that's what

my son looks like he has when he walks (holding on to someone's

hand). He had the umbilical cord wrapped around his foot and his

neck twice at birth, so hopefully he didn't lose oxygen. He had an

MRI at 9 months to rule out a missing corpus colosum (sp?) and

fortunately it looked 'almost' normal, just a little thin which

could have been his age. They didn't mention any other

abnormalities. They'll do another at age 2 just to check. I really

hope with PT your daughter continues to improve. There is a

group for older plagio babies that might be able offer some other

suggestions. Good luck!

Sheila, mom to , 16 months

> > >

> > > Well Kaitlyn is done with her helmet treatment. Her skull

has

> > > corrected as much as it can with the helmet. She only had 2

mm

> of

> > > correction but it did prevent her skull from becoming even

> more

> > > misshapen. So I should be happy right? Then why do I feel so

> bad?

> > > The Deformational Plagiocephaly is still apparent and her

> facial

> > > asymmetries will likely always be there. I guess I feel like

I

> > > failed her somehow but there was nothing more that I could

do.

> Her

> > > Plagiocephaly didn't start until she was 9 months old. It

> started

> > > with ridging on the top of her head, by a year old there was

> bulging

> > > on the right side, then at about 14 months the back of her

> head

> > > became flat on the left side. I aggressively pursued a

helmet

> due

> > > to her head becoming progressively misshapen over a short

> period of

> > > time. At 15 months she was casted out of state and we left

the

> next

> > > day with her helmet. She wore her helmet for 6 months and is

> now 21

> > > months old. Her head was perfectly round before 9 months old

> so I

> > > believe her Plagiocephaly was due to her bone disease. When

> you

> > > look in the mirror she looks like a totally different child.

> All I

> > > can imagine is her being in Jr. High and brushing her hair

in

> front

> > > of the mirror after gym class and the other kids asking why

> her head

> > > looks like that. I suppose I'm being dramatic and I truly

> should be

> > > thankful for the correction that she did have and that it

> prevented

> > > her skull from becoming more misshapen.

> > >

> > > Naomi

> > >

> >

>