Re: Granddaughter has Hanger helmet

[Guest guest]

Sorry this is so tough. It does sound like the Hanger guy is out of

his league if he is soliciting all this input at a convention. Nice

that is he trying, but... I've heard some headshapes described as

" complex " - where it isn't just the textbook flattening. In these

cases there are usually several areas involved. Can you posts some

pics of your little one? If the headshape is complex I would suggest

trying to go to CT, since it seems they put a bit more individual

attention in designing bands for tough cases. They are more specific

about identifying where the band should hold etc (at least that is the

impression I get). I think it might be worth visiting them if you can

make arrangements with Angle Flights. Also if you do visit a starband

provider you should discuss this with them and ask if they feel they

would be able to design a band that would be able to help all 3

quadrants, and if they feel that makes her head more complicated.

Unfortunately most peds are pretty ignorant about plagio. We were

lucky that we had a very good cranial facial speicalist in our HMO,

but the ped was not much help. We asked about my daughters head at 2

mo and were told " don't worry " then at 4 mo she said " looks pretty

bad " . At least she quickly referred us to a specialist and we got good

correction.

Please keep us updated.

-christine

sydney 2 yrs starband grad

> & gt;

> & gt; I have a granddaughter (Kendall) who has pretty severe plagio and

> & gt; tort. She was diagnosed with both at about 3 months (although we

> & gt; just found out it had been noted in her chart since 4 days

old!!!).

> & gt; We live in Tallahassee, Florida and this medical community

lacks many

> & gt; specialists. We have not been given ANY guidance and have had to

> & gt; learn on our own. We were referred to PT and Kendall was taken

1 to

> & gt; 2 times a week until insurance capped out. The tort has improved

> & gt; greatly. She was helmeted May 16th at our local Hanger. It has

been

> & gt; almost 8 weeks with no visible results (in fact I think it may be

> & gt; getting worse).

> & gt;

> & gt; She was a breech baby and was stuck in the frank breech position

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

> & gt; pregnancy. She was born with a misshapened head and we were told

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

> & gt; happen and the tort just exasebated everything. Her ears are

> & gt; misaligned and she has facial assymetry.

> & gt;

> & gt; She has had a CT of her skull (only on our insistence) and it

appears

> & gt; that the sutures are not closed (although there was some

movement of

> & gt; the head during the test). We are still concerned that

something may

> & gt; have been overlooked and have just now scheduled an appointment

with

> & gt; a top notch craniofacial specialist in Tampa. I am worried that

the

> & gt; ortho at Hanger is not experienced enough to handle Kendall's

case,

> & gt; he even has told us that she has a very complicated case. Miami is

> & gt; the closest location for the DOC bands and that is about a 10 hour

> & gt; drive...logisticall y that would be a nightmare.

> & gt;

> & gt; We would love any advice....I have certainly gained a lot of

> & gt; knowledge by reading everyones postings. Thanks for being so

vocal!!!

> & gt;

> & gt; A VERY concerned and loving Nana.

> & gt;

>