Re: Kaitlyn is done with treatment

[Guest guest]

Hi Naomi,

I just looked at Kaitlyn's photos and noticed she has one side of

her lip/cheek lower than the other. I don't know if it was just

that photo or not. My son has similar asymmetry that turned out to

be caused by undiagnosed tort. He never had much tilt - his main

issue was trouble turning as far to the left as he could to the

right. Doctors kept telling me it was 'nothing', but because of the

tort he developed facial scoliosis. He didn't have any facial

asymmetry at 6 months, but it was very noticible (at least to me) by

12 months. Since we started PT 5 months ago his face looks SO much

better. If you have any sense that she may have tort (you don't

mention it) you might want to have her checked out by a pediatric

physical therapist. They are trained to see minor abnormalities

that regular doctors miss.

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

> >

>