New here and I urgently need help!

[Guest guest]

Hello, my name is Lesa and I have a 10-1/2 month old daughter, Kaity,

with Positional Plagiocephaly and Torticollis.

I am just beginning to learn about these conditions, but as time is of

the essence in getting her treated, I was wondering if there are

references regarding the different types of helmets used for therapy?

I've seen the DOCband and STARband on the web, and am wondering what

the best band (whether it is one of those or another) is considered to

be? And also if anyone knows of any recommended specialists in the

St. Louis area for this condition?

As background, Kaity was born at 39 weeks by vacuum-assisted delivery

(induced). At the time her head was misshapen but we were assured

that it was a result of the delivery and that it would soon correct

itself.

Over the next few months, however, her head shape continued becoming

more abnormal with a noticeable flat spot on her left side, I believe

because she sleeps with her head tilted in that direction while

sucking her left thumb. Around that same time, we also noticed that

her ears were extremely different, with the left one being larger and

flatter, and she was noticably reluctant to turn to her right side.

These issues were raised with our pediatrician, who felt that they

would correct on their own.

We began trying to position her differently while sleeping and using

one of the special pillows to reduce pressure and did notice some

improvement over the next couple of months, but again brought up our

concerns at Kaity's 9 month well-child visit. At that time, our

pediatrician again stated that she did not think it was a problem but

agreed to refer us to a plastic surgeon for evaluation.

The first appointment we could get was yesterday, by which time Kaity

is now 10-1/2 months old. The plastic surgeon stated that he felt the

degree of flatness would be about a 4 or 5 on a scale of 10. Then he

pointed out to us the rather severe (from my perspective) misalignment

of her ears. To my surprise, however, he suggested that we do

nothing--he said that at her age, a helmet would be of extremely

limited benefit and probably not worth the hassle. He felt that

because she is a girl, her hair would disguise most of the problem.

And he also said that the helmet would do nothing about her ear

misalignment.

I was initially relieved that we wouldn't have to get the helmet, but

after getting home and looking at Kaity more closely, I felt that this

just isn't acceptable. I started doing internet research and the more

I look into it, the more certain I am that we really need to address

this. If what I've read is correct, it is not too late to begin

therapy.

I called our pediatrician today and after lengthy discussion she

agreed that we try the helmet for a month, if only to see if we can

prevent the flatness from becoming worse since Kaity still sleeps on

it. But it's kind of up to me to do the legwork on this. I've been

given the contact info for a place to get the helmet, but I don't have

a lot of confidence considering the answers I've gotten so far. I

feel like I need to do my own research.

I also convinced the ped. to refer us to a physical therapist to

address the torticollis, so I feel better about that. But I feel

absolutely horrible that I allowed so many months to go by while

believing the ped. that it would resolve on its own. I should have

done my research sooner rather than accepting that answer.

At any rate, any suggestions or information (or words of support since

I'm being made to feel like I'm over-reacting) would be greatly

appreciated!

Thanks so much,

Lesa