Granddaughter has Hanger helmet

June 13, 2008

I have a granddaughter (Kendall) who has pretty severe plagio and

tort. She was diagnosed with both at about 3 months (although we

just found out it had been noted in her chart since 4 days old!!!).

We live in Tallahassee, Florida and this medical community lacks many

specialists. We have not been given ANY guidance and have had to

learn on our own. We were referred to PT and Kendall was taken 1 to

2 times a week until insurance capped out. The tort has improved

greatly. She was helmeted May 16th at our local Hanger. It has been

almost 8 weeks with no visible results (in fact I think it may be

getting worse).

She was a breech baby and was stuck in the frank breech position

jammed up under her mother's ribs for the last 3-4 months of the

pregnancy. She was born with a misshapened head and we were told

that it would resolve in a week or two. Of course, that didn't

happen and the tort just exasebated everything. Her ears are

misaligned and she has facial assymetry.

She has had a CT of her skull (only on our insistence) and it appears

that the sutures are not closed (although there was some movement of

the head during the test). We are still concerned that something may

have been overlooked and have just now scheduled an appointment with

a top notch craniofacial specialist in Tampa. I am worried that the

ortho at Hanger is not experienced enough to handle Kendall's case,

he even has told us that she has a very complicated case. Miami is

the closest location for the DOC bands and that is about a 10 hour

drive...logistically that would be a nightmare.

We would love any advice....I have certainly gained a lot of

knowledge by reading everyones postings. Thanks for being so vocal!!!

A VERY concerned and loving Nana.

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