Re: Mayo Clinis MN

[Guest guest]

Hi Heidi:

Yes, the helmet is designed by an orthotist there, in conjunction

with a plastic surgeon. I understand that the plastic surgeon is a

very good SURGEON, but he really didn't take my daughter's condition

very seriously, and, in his words, he " really isn't concerned about

the cosmetics of plagiocephaly " . I found that really, really

strange, considering he is a PLASTIC surgeon. If that truly is the

case, why would parents fix other disorders that are disfiguring but

not life threatening (like a mild case of cleft palate, or burns, or

what have you)??

After seeing their helmet and comparing it to the DOC band - really,

there is NO COMPARISON. Also I was told the DOC band cost more - but

in fact, it only costs $200 more. And includes OT. With the other

band I paid for the band, and I had to pay between $130 and $200 (or

thereabouts) additionally every week for the PT for tort. So, no

bargain there.

The thing that disturbed me most was that after 3 weeks we could no

longer get the helmet to fit. I took my daughter in to the orthotist

EVERY DAY for an adjustment. When I called the surgeon to tell about

my troubles, I was told " I really don't care if she wears the helmet

or not. " Also, " In some cases, the head is just too misshapen to get

a good fit and we have to abandon treatment. " So, he apparently

abandons treatment with those kids who need it most! I was fit to be

tied!!! (In fact, just thinking about it again gets my eires up...)

Fortunately, CT and the DOC band did not find it too hard to treat my

daughter, and today her head looks GREAT! To an untrained eye, you

cannot even see the misshapen head, nor the slight asymmetries. They

really improved significantly with the DOC band as well as with the

additional treatments that we do for her. I hate to even think about

how she would have looked had we not followed our own instincts....

I read the reply from Marci, and she gave REALLY, REALLY good

advice. I think the most important thing is not necessarily the

band, but the experience of the orthotist. But then again, at

Gillette's they had treated over 400 kids, and look how it went for

me....

Again, good luck, and let me know if you have any other questions.

Kind regards,

, " Rhiannon the round-head's " mom :~)

> > Does anybody know anything about Mayo Clinic? I need some

help.

> My

> > Peds doctor refered us to a specialist, but we just do not feel

> > comfortable. We are starting to wonder if we should go to a

> > children's hospital. I have search archives, but nothing comes

up

> > under Mayo Clinic. If anyone has heard anything or attends the

> > clinic, please let me know. We are scheduled for our son's

casting

> on

> > Thursday the 18th. Help, Heidi

>

>

>