Re: anyone from PA/DE Area?

March 16, 2001

We live in Delaware and are currently taking our 4 month old son to AI

duPont for physical therapy (for treatment of torticollis) and for a

Starband helmet. We have been very pleased with the physical therapist at AI

and have seen improvement. However, we have not been pleased with the helmet

from AI. We had him fitted about a week ago (on a Friday) and had to take

him to AI that following Monday for adjustments already. The person doing

the adjustments ended up securing the band too tightly without our knowing

it and our little guy cried in pain for one hour. It was awful! We went back

to the department for more adjustments and were there for most of the day.

They kept making more and more adjustments. A day later we still didn't

think it fit right so we went back again only to have them tell us that the

helmet was " not right " to begin with so they had to recast him again. We are

really disappointed with AI in this respect and lack confidence in their

ability to get it right the second time. We also feel the neurosurgeon

should have some involvement with the department making the helmet but so

far there has been no interaction at all. After discussing our concerns with

our son's pediatrician, we have decided to go to Children's Hospital in

Philadelphia for a second opinion.

Anyone else out there with similar problems? We are very discouraged and are

even wondering if it's worth it to have him wear the helmet since no one can

seem to find any concrete evidence that it works. We can't bear to have him

endure another casting.

-----Original Message-----

From: Stasia [mailto:SGIB2001@...]

Sent: Thursday, March 15, 2001 11:03 AM

Plagiocephaly

Subject: anyone from PA/DE Area?

Hello!

We are from Pennsylvania and boarder Delaware. My son is currently

being treated at AI DuPont. We saw a few different Doctors and I

just was wondering what other docs are out there. I wanted to know

in case we ever need a second opinion on anything that relates to his

plagio.

Thanks

Stasia

March 16, 2001

We have been thru the same thing. we went to dupont for tests with dr.

odonnell but couldnt deal with the man because he was terribly cold

and rude with my son (who was exceptionally cute that day). anyway-we

had the starband too in the beginning through a different place but

have since switched to the doc band. it is a hike to paramus nj, but

worth it for us.the starband has had great results from what i hear

from others, HOWEVER, you must go to someone who is knowledgeable and

experienced. we did not have that someone in our starband experience

and wasted valuable time. if you are not happy with the 2nd fit as

well, DONT continue treatment there. go elsewhere if possible. just

keep in mind that there is an adjustment period that may be harder for

some kids than others. you will know in your heart (i think) if your

son is annoyed with having something on his head or in pain. We

stopped the starband therapy when we knew that it was pain that was

causing our son to be overly upset. at first we thought maybe he

just hated it-which i wouldnt blame him. now-we totally cant afford

the doc band right now but have begged, borrowed and maxed our credit

card to get the $ until we finish fighting the insurance company. i

truely believe that therapy works because i have seen results on

others and i was just about to post on the group that after only 1

week with the doc, i swear that my husband and i have noticed an area

that has changed. I did a lot of research and have spoken to people at

the fda who approved the various therapies and feel comfortable

putting my son in the doc. you need to get to a point where you feel

confident in making an educated decision one way or another. i suggest

reading as much as possible and asking as many questions as possible

and check out the files section to look at photos and read stories.

this is a great site for info and i think everyone here will jump on

the chance to help u out. there are many people who have helmets made

locally/starbands and docbands that are really happy. contact me

anytime if you want to talk further. good luck with whichever route u

go. lisabnetz@... lisa

--- In Plagiocephaly@y..., " Suzanne Misciagna " <suzannemisciagna@h...>

wrote:

> We live in Delaware and are currently taking our 4 month old son to

AI

> duPont for physical therapy (for treatment of torticollis) and for a

> Starband helmet. We have been very pleased with the physical

therapist at AI

> and have seen improvement. However, we have not been pleased with

the helmet

> from AI. We had him fitted about a week ago (on a Friday) and had to

take

> him to AI that following Monday for adjustments already. The person

doing

> the adjustments ended up securing the band too tightly without our

knowing

> it and our little guy cried in pain for one hour. It was awful! We

went back

> to the department for more adjustments and were there for most of

the day.

> They kept making more and more adjustments. A day later we still

didn't

> think it fit right so we went back again only to have them tell us

that the

> helmet was " not right " to begin with so they had to recast him

again. We are

> really disappointed with AI in this respect and lack confidence in

their

> ability to get it right the second time. We also feel the

neurosurgeon

> should have some involvement with the department making the helmet

but so

> far there has been no interaction at all. After discussing our

concerns with

> our son's pediatrician, we have decided to go to Children's Hospital

in

> Philadelphia for a second opinion.

>

> Anyone else out there with similar problems? We are very discouraged

and are

> even wondering if it's worth it to have him wear the helmet since no

one can

> seem to find any concrete evidence that it works. We can't bear to

have him

> endure another casting.

>

> -----Original Message-----

> From: Stasia [mailto:SGIB2001@h...]

> Sent: Thursday, March 15, 2001 11:03 AM

> Plagiocephaly@y...

> Subject: anyone from PA/DE Area?

>

> Hello!

>

> We are from Pennsylvania and boarder Delaware. My son is currently

> being treated at AI DuPont. We saw a few different Doctors and I

> just was wondering what other docs are out there. I wanted to know

> in case we ever need a second opinion on anything that relates to

his

> plagio.

>

> Thanks

> Stasia

>

March 16, 2001

wondering if it's worth it to have him wear the helmet since no one canseem to find any concrete evidence that it works

Suzanne:

You have more than enough evidence from this group alone that the band can work!! However, it all depends on how your orthotist performs for your son. If s/he doesn't have the skill or expertise, and is not willing to do his homework, it has the potential of being disastrous! Be sure to ask LOTS of questions, and if there is ANY concern, speak up. There are also email addy's in the BOOKMARKS section to get a hold of people from Orthomerica (STARband manufacturers). If you feel you are not getting the answers you want from your orthotist, be sure to get a hold of Dulcey Lima immediately.

Best of luck on round 2!

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...