Re: anyone from PA/DE Area? - SUZANNE

[Guest guest]

Suzanne

It is my understanding that Lawall Prostetics is an independent

company. They have no direct connection with AI DuPont...I do also

believe that my son's doc should be more involved in this process.

He is seeing Dr. ph Queenan at AI and Dr. Fischer in Wilmington.

Dr. Queenan is a Neurosurgeon in with Dr. O'Donnell and Dr. Fischer

is a Neurologist on St.

My son is also 4 mo and just about everyone I have spoken to tells me

that it is a great thing that we are getting him in a band early so

that we will have better results. From readin these boards it seems

like some people are very lucky and have no problems from day one and

others have to go through an adjustment period.

What degree is your child's plagio? They have classified my son's as

being severe so I am really willing to try the band for as long as I

have to at this point.

We go to AI on Monday 26th for a sedated MRI brain scan. We'll be

there bright and early - 7:15 appointment. I wish the band was in

the same time so we could get it all done in one day!

If you want a second opinion lots of people have been telling me

about Dr. Bartlett at CHOP.

Good Luck!

Stasia

> 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

>

>

>

>

[Guest guest]

We were weekly at 6-7 months with our DOC. With our second band, STAR, we go 1 1/2 - 2 weeks. I just made it three weeks and my son is 15 1/2 months! I did go through DOC treatment with another Mom with a child the same age and she was able to go every other week. Really depends on the head and growth but once a month for any band, I don't think so!

Tammy & 12/8/99

[Guest guest]

Stasia,

Thanks for your message. We are also seeing Dr. Queenan at AI. You are

correct -- Lawall Prostetics is independent from AI. I feel as though Dr.

Queenan should be more involved. We contacted him about our problems with

Lawall. He agreed to go the department to see the helmet on my son after we

asked to speak to him personally. However, this could not be arranged since

we couldn't even use that helmet. What disturbed me is that Dr. Queenan told

my husband that he knows of the helmet device but had not actually seen it

on a child.

I will be at AI on Wednesday, 3/21 to have my son fitted again.

Our son's plagio has also been labeled severe. We do want to proceed with

the helmet because other than Physical Therapy, it appears that this is the

only treatment recommended to us. I am encouraged by the positive stories I

have read about the band. I just wish we could get this straightened out.

I often wonder if the DOC band is better. There is practically nothing on

the Starband web site. Plus, my son's pediatrician thought only the DOC band

was FDA approved but I thought the Starband was FDA approved too. We are

reading as much as we can and constantly asking questions. If not for us

being on top of this, our son would be wearing a helmet that wasn't even

right. Who knows what damage that could have caused!

We are seeing Dr. Sutton at CHOP. I hope we make out ok.

Why did they suggest an MRI brain scan for your son? Dr. Queenan told us

that we needed no testing because our son's condition was a classic case of

severe positional plagio.

Good luck. I will be thinking of you.

Suzanne

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

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

Sent: Thursday, March 15, 2001 10:37 PM

Plagiocephaly

Subject: Re: anyone from PA/DE Area? - SUZANNE

Suzanne

It is my understanding that Lawall Prostetics is an independent

company. They have no direct connection with AI DuPont...I do also

believe that my son's doc should be more involved in this process.

He is seeing Dr. ph Queenan at AI and Dr. Fischer in Wilmington.

Dr. Queenan is a Neurosurgeon in with Dr. O'Donnell and Dr. Fischer

is a Neurologist on St.

My son is also 4 mo and just about everyone I have spoken to tells me

that it is a great thing that we are getting him in a band early so

that we will have better results. From readin these boards it seems

like some people are very lucky and have no problems from day one and

others have to go through an adjustment period.

What degree is your child's plagio? They have classified my son's as

being severe so I am really willing to try the band for as long as I

have to at this point.

We go to AI on Monday 26th for a sedated MRI brain scan. We'll be

there bright and early - 7:15 appointment. I wish the band was in

the same time so we could get it all done in one day!

If you want a second opinion lots of people have been telling me

about Dr. Bartlett at CHOP.

Good Luck!

Stasia

> 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

>

>

>

>

[Guest guest]

Is the device a STARband or a helmet? It sounds more like helmet - even still,

once a month sounds like not enough. We have a helmet and we go every 2 weeks.

Marci (Mom to )

Oklahoma

[Guest guest]

Suzanne

How frustrating that must be to have a band and it not fit properly.

I did call Lawall today and they told me that the band is constructed

under FDA regulations that is why they have to send it out to be

constructed. They told me that I have to call my doctor and inform

him of what is going on and that they (doc) will schedule

appointments as they see necessary. Lawall told me that I will come

in at least once a month to see them, but that I can call at anytime

with questions and if the helmet needs adjusting they will fit me in

right away.

Dr. Queenan didn't order the Brain Scan - Dr. Fischer in Wilmington

who is a Neurologist ordered it just to be on the safe side because

he said it was the most severe case he had seen and since my son was

born with a flat spot on the back of his head he just wanted to check

everything out to be sure they don't miss anything. I don't know if

this is out of the ordinary or not.

We won't be at AI until the 26th so we'll miss you this time, maybe

another time!!

Stasia

> > 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

> >

> >

> >

> >

[Guest guest]

Hi! My son who is 7 mos old today has the STARBand (wearing it for

just over 8 weeks!) and he goes for adjustments every 3 weeks. I

drive to Havertown, PA for a 10 minute adjustment appointment every 3

weeks. They told me to look out for any redness on his head between

appts just in case he goes thru a growth spurt, then I would have to

call to come in sooner. Haven't had to yet. The process has been

very smooth so far.

Kass and (8/16/00 - STARBand on 1/6/01)

> > > 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

> > >

> > >

> > >

> > >

[Guest guest]

Lawall told me that I will come in at least once a month to see them, but that I can call at anytime with questions and if the helmet needs adjusting they will fit me in right away.

I'm curious as to why they are telling you that this STARband only needs to be adjusted once a month???? This is not a "passive" helmet, and to my understanding, should be checked/adjusted weekly or biweekly, depending on the child's age (young babies grow FAST, and this helmet applies pressure to the head!). Someone please correct me if I'm wrong, but this worries me!

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

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

From: Stasia

Plagiocephaly

Sent: Friday, March 16, 2001 10:23 AM

Subject: Re: anyone from PA/DE Area? - SUZANNE

SuzanneHow frustrating that must be to have a band and it not fit properly. I did call Lawall today and they told me that the band is constructed under FDA regulations that is why they have to send it out to be constructed. They told me that I have to call my doctor and inform him of what is going on and that they (doc) will schedule appointments as they see necessary. Lawall told me that I will come in at least once a month to see them, but that I can call at anytime with questions and if the helmet needs adjusting they will fit me in right away.Dr. Queenan didn't order the Brain Scan - Dr. Fischer in Wilmington who is a Neurologist ordered it just to be on the safe side because he said it was the most severe case he had seen and since my son was born with a flat spot on the back of his head he just wanted to check everything out to be sure they don't miss anything. I don't know if this is out of the ordinary or not.We won't be at AI until the 26th so we'll miss you this time, maybe another time!!Stasia> > 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> >> >> >> >

[Guest guest]

Thanx Kass!

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

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

From: tenerelli1@...

Plagiocephaly

Sent: Friday, March 16, 2001 11:21 AM

Subject: Re: anyone from PA/DE Area? - SUZANNE

Hi! My son who is 7 mos old today has the STARBand (wearing it for just over 8 weeks!) and he goes for adjustments every 3 weeks. I drive to Havertown, PA for a 10 minute adjustment appointment every 3 weeks. They told me to look out for any redness on his head between appts just in case he goes thru a growth spurt, then I would have to call to come in sooner. Haven't had to yet. The process has been very smooth so far.Kass and (8/16/00 - STARBand on 1/6/01)> > > 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> > >> > >> > >> > >

[Guest guest]

We are scheduled to come in once a month but they did tell us we would be back sooner. They have been good about fitting us in. The only problem is that we do not have 100% confidence in their abilities. We had conflicting information as to how tight the helmet should be. The person who originally did the casting said to not make it too tight. A different person who did the adjustment told us to make it tight. We can't seem to get a straight answer from anyone there. Plus, we felt we were treatly rudely. They kept asking us if this was our first child and if we read the paperwork associated with the band. The answer to both is yes but the real issue is why they can't get it right.

-----Original Message-----From: Kendra [mailto:p-nutsmum@...]Sent: Friday, March 16, 2001 3:08 PMPlagiocephaly Subject: Re: anyone from PA/DE Area? - SUZANNE

Lawall told me that I will come in at least once a month to see them, but that I can call at anytime with questions and if the helmet needs adjusting they will fit me in right away.

I'm curious as to why they are telling you that this STARband only needs to be adjusted once a month???? This is not a "passive" helmet, and to my understanding, should be checked/adjusted weekly or biweekly, depending on the child's age (young babies grow FAST, and this helmet applies pressure to the head!). Someone please correct me if I'm wrong, but this worries me!

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

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

From: Stasia

Plagiocephaly

Sent: Friday, March 16, 2001 10:23 AM

Subject: Re: anyone from PA/DE Area? - SUZANNE

SuzanneHow frustrating that must be to have a band and it not fit properly. I did call Lawall today and they told me that the band is constructed under FDA regulations that is why they have to send it out to be constructed. They told me that I have to call my doctor and inform him of what is going on and that they (doc) will schedule appointments as they see necessary. Lawall told me that I will come in at least once a month to see them, but that I can call at anytime with questions and if the helmet needs adjusting they will fit me in right away.Dr. Queenan didn't order the Brain Scan - Dr. Fischer in Wilmington who is a Neurologist ordered it just to be on the safe side because he said it was the most severe case he had seen and since my son was born with a flat spot on the back of his head he just wanted to check everything out to be sure they don't miss anything. I don't know if this is out of the ordinary or not.We won't be at AI until the 26th so we'll miss you this time, maybe another time!!Stasia> > 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> >> >> >> >

[Guest guest]

Suzanne:

I really hate to be skeptical, but I would really keep my eye on these guys. Have you emailed Dulcey Lima about this situation? Her email address is in the BOOKMARKS under ORTHOMERICA.

Best of luck!

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

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

From: Suzanne Misciagna

Plagiocephaly

Sent: Friday, March 16, 2001 12:53 PM

Subject: RE: anyone from PA/DE Area? - SUZANNE

We are scheduled to come in once a month but they did tell us we would be back sooner. They have been good about fitting us in. The only problem is that we do not have 100% confidence in their abilities. We had conflicting information as to how tight the helmet should be. The person who originally did the casting said to not make it too tight. A different person who did the adjustment told us to make it tight. We can't seem to get a straight answer from anyone there. Plus, we felt we were treatly rudely. They kept asking us if this was our first child and if we read the paperwork associated with the band. The answer to both is yes but the real issue is why they can't get it right.

-----Original Message-----From: Kendra [mailto:p-nutsmum@...]Sent: Friday, March 16, 2001 3:08 PMPlagiocephaly Subject: Re: anyone from PA/DE Area? - SUZANNE

Lawall told me that I will come in at least once a month to see them, but that I can call at anytime with questions and if the helmet needs adjusting they will fit me in right away.

I'm curious as to why they are telling you that this STARband only needs to be adjusted once a month???? This is not a "passive" helmet, and to my understanding, should be checked/adjusted weekly or biweekly, depending on the child's age (young babies grow FAST, and this helmet applies pressure to the head!). Someone please correct me if I'm wrong, but this worries me!

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

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

From: Stasia

Plagiocephaly

Sent: Friday, March 16, 2001 10:23 AM

Subject: Re: anyone from PA/DE Area? - SUZANNE

SuzanneHow frustrating that must be to have a band and it not fit properly. I did call Lawall today and they told me that the band is constructed under FDA regulations that is why they have to send it out to be constructed. They told me that I have to call my doctor and inform him of what is going on and that they (doc) will schedule appointments as they see necessary. Lawall told me that I will come in at least once a month to see them, but that I can call at anytime with questions and if the helmet needs adjusting they will fit me in right away.Dr. Queenan didn't order the Brain Scan - Dr. Fischer in Wilmington who is a Neurologist ordered it just to be on the safe side because he said it was the most severe case he had seen and since my son was born with a flat spot on the back of his head he just wanted to check everything out to be sure they don't miss anything. I don't know if this is out of the ordinary or not.We won't be at AI until the 26th so we'll miss you this time, maybe another time!!Stasia> > 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> >> >> >> >