Some suggestions, please...

[Guest guest]

Thanks, yeah....they did scan 's head with the scanner. They

did not do a mold of his head which I read a lot of you had done.

That's why I considered his helmet to be more " over the counter "

rather than being made especially for him. Am I making sense?

PT is twice a week for an hour each day. Some days he does really

good & others he is just the same as the first day he went. (They

say his " tilt " is twenty degrees) I also do the stretches with him

as many times a day as I can. I truly feel that the times when he

is better is due to him getting stronger, not the stretching.

>

> I would see if you can get more information on this helmet. I got

to a place

> that a lot of the group members have heard of but still had an

issue with

> the person who made the helmet. I don't much about this helmet he

is wearing

> but I would find out. They did not shape his head with mold or

scan him with

> a scanner ? They just got a helmet and inserted foam ? Maybe I am

off but I

> have not heard of that. My son had tort and it took him four

months of PT

> but it worked out great. How aggressive is your physical therapist

he has ?

> Are they one top of seeing him weekly and have you doing exercises

daily a

> lot ?

>

>

>

>

>

>

>

>

>

> _____

>

> From: Plagiocephaly

[mailto:Plagiocephaly ]

> On Behalf Of Lindy

> Sent: Thursday, August 17, 2006 10:04 PM

> Plagiocephaly

> Subject: Some suggestions, please...

>

>

>

> Hi. My name is Lindy & my husband & I live in Kernersville, NC. My

> son, who is now almost 5 months old was diagnosed with

> Plagio & tort about a month ago. (This was after I called his Dr &

> told them I thought he had tort and I wanted him seen. Although I

> had just been at the Dr 2 weeks prior, nothing was said to me

about

> it!?)

> Anyways, he started PT in July for the tort & it is no better.

> Today his PT told me that she wants to find out if he should get a

> neck brace or surgery to correct the tort because there is not

much

> change since the PT started. Has anyone had any experience with a

> neck brace or surgery for tort? I have done searches on the

> internet & cannot find any info on it!

> My son was also fitted with a blue helmet by a Plastic surgeon

which

> he has now had for about 4 weeks. It says Danmar Products on the

> back of the helmet but that is all I know. I see alot of posts on

> Star bands & doc bands but I think what got is basically

> an " over the counter " helmet. They basically put it on his head &

> then put foam inside to fit it to his head. This makes me a little

> nervous since they don't want to see him for 8 weeks & I have no

> idea if the helmet is fitted to his head correctly. It always

looks

> crooked but they told me that is normal since his head is

> crooked?!? It is getting tighter since he is growing but I have no

> idea if it's doing it's job.

> I would appreciate any input!!!

> Thank you!

> Lindy

> Mother to :

> Ava 23 months &

> 5 months

>

[Guest guest]

Thanks for your help...I have never even heard of crainiosacral

therapy. Who should I ask about it...the PT, Plastic Surgeon or his

Ped?

That is exactly what I have been told, in streesful times & growth

spurts, the tort comes back. This worries me as we can't get it to

go away to begin with.

> >

> > Hi. My name is Lindy & my husband & I live in Kernersville,

NC.

> My

> > son, who is now almost 5 months old was diagnosed with

> > Plagio & tort about a month ago. (This was after I called his

Dr

> &

> > told them I thought he had tort and I wanted him seen. Although

I

> > had just been at the Dr 2 weeks prior, nothing was said to me

> about

> > it!?)

> > Anyways, he started PT in July for the tort & it is no better.

> > Today his PT told me that she wants to find out if he should get

a

> > neck brace or surgery to correct the tort because there is not

> much

> > change since the PT started. Has anyone had any experience with

a

> > neck brace or surgery for tort? I have done searches on the

> > internet & cannot find any info on it!

> > My son was also fitted with a blue helmet by a Plastic surgeon

> which

> > he has now had for about 4 weeks. It says Danmar Products on

the

> > back of the helmet but that is all I know. I see alot of posts

on

> > Star bands & doc bands but I think what got is basically

> > an " over the counter " helmet. They basically put it on his head

&

> > then put foam inside to fit it to his head. This makes me a

> little

> > nervous since they don't want to see him for 8 weeks & I have no

> > idea if the helmet is fitted to his head correctly. It always

> looks

> > crooked but they told me that is normal since his head is

> > crooked?!? It is getting tighter since he is growing but I have

> no

> > idea if it's doing it's job.

> > I would appreciate any input!!!

> > Thank you!

> > Lindy

> > Mother to :

> > Ava 23 months &

> > 5 months

> >

>

[Guest guest]

Hi Lindy - I don't know if this holds true where you are located, but our DOC band clinician is a PT who is certified in craniosacral therapy - he has worked on our son's head several times. You might want to ask your PT if he/she knows of any referrals. Also, some massage therapists are certified with the craniosacral, as well. My mom (who is in her 50s) has this done and swears by it - Craniosacral is a series of pressure points on the head that will affect different parts of the body. Sort of like a massage version of acupuncture (NO needles) I might actually try it myself one of these days! Good luck! Danene Lindy <avasmom76@...> wrote: Thanks for your help...I have never even heard of crainiosacral therapy. Who should I ask about it...the PT, Plastic Surgeon or his Ped?That is exactly what I have been told, in streesful times & growth spurts, the tort comes back. This worries me as we can't get it to go away to begin with.> >> > Hi. My name is Lindy & my husband & I live in Kernersville, NC. > My > > son, who is now almost 5 months old was diagnosed with > > Plagio & tort about a month ago. (This was after I called his Dr > & > > told them I thought he had tort and I wanted him seen. Although I > > had just been at the Dr 2 weeks prior, nothing was said to me > about > > it!?)> > Anyways, he started

PT in July for the tort & it is no better. > > Today his PT told me that she wants to find out if he should get a > > neck brace or surgery to correct the tort because there is not > much > > change since the PT started. Has anyone had any experience with a > > neck brace or surgery for tort? I have done searches on the > > internet & cannot find any info on it!> > My son was also fitted with a blue helmet by a Plastic surgeon > which > > he has now had for about 4 weeks. It says Danmar Products on the > > back of the helmet but that is all I know. I see alot of posts on > > Star bands & doc bands but I think what got is basically > > an "over the counter" helmet. They basically put it on his head & > > then put foam inside to fit it to his head. This makes me a > little > > nervous since

they don't want to see him for 8 weeks & I have no > > idea if the helmet is fitted to his head correctly. It always > looks > > crooked but they told me that is normal since his head is > > crooked?!? It is getting tighter since he is growing but I have > no > > idea if it's doing it's job.> > I would appreciate any input!!!> > Thank you!> > Lindy> > Mother to :> > Ava 23 months & > > 5 months> >>The greatest thing in this world is not so much where we stand, as in what

direction we are moving. - Oliver Wendell Holmes

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hello. We live in Michigan and also have a helmet made by Danmar.

We visited the ortho at the University of Michigan. Our son was

measured at our first visit. Then a cast of his head was created,

this took only several minutes. About 2 weeks later we picked up

his helmet. It was formed to his head allowing room for growth on

the flat side from the casting and measurements taken earlier. We

then began the breaking in period followed by 23 hours of wear. We

have gone in several times for adjustments and every 6 weeks for

regular visits. During these visits, he is measured and observed

sitting, rolling, basically moving around with the helmet on. They

look for how the fit is, rotating issues, and general concerns we

may have. When we have taken him in for adjustments it is becuase

we notice redness that does not go away. they get us in that day or

the next. they observe, make some markings, adjust the helmet,

observe, and we are on our way. It sounds as if your ortho is not

familiar with the process. Even though it is a Danmar helmet, it

should never be over the counter. Was a casting done? We're you

given precautions and things to look for? Give them a call and ask

them about the casting procedure or for another ortho.

Kim

>

> Hi. My name is Lindy & my husband & I live in Kernersville, NC.

My

> son, who is now almost 5 months old was diagnosed with

> Plagio & tort about a month ago. (This was after I called his Dr

&

> told them I thought he had tort and I wanted him seen. Although I

> had just been at the Dr 2 weeks prior, nothing was said to me

about

> it!?)

> Anyways, he started PT in July for the tort & it is no better.

> Today his PT told me that she wants to find out if he should get a

> neck brace or surgery to correct the tort because there is not

much

> change since the PT started. Has anyone had any experience with a

> neck brace or surgery for tort? I have done searches on the

> internet & cannot find any info on it!

> My son was also fitted with a blue helmet by a Plastic surgeon

which

> he has now had for about 4 weeks. It says Danmar Products on the

> back of the helmet but that is all I know. I see alot of posts on

> Star bands & doc bands but I think what got is basically

> an " over the counter " helmet. They basically put it on his head &

> then put foam inside to fit it to his head. This makes me a

little

> nervous since they don't want to see him for 8 weeks & I have no

> idea if the helmet is fitted to his head correctly. It always

looks

> crooked but they told me that is normal since his head is

> crooked?!? It is getting tighter since he is growing but I have

no

> idea if it's doing it's job.

> I would appreciate any input!!!

> Thank you!

> Lindy

> Mother to :

> Ava 23 months &

> 5 months

>

[Guest guest]

Hi Lindy,

I just wanted to comment on our son's condition. He has tort and

plagio and a very rare type of cranio. He was diagnosed at 3 weeks

with the tort and has been in PT since 5 weeks old. We saw a little

improvement with that and home stretches but not enough. So when he

was about 4 months old, I started looking into Osteopath (the

professional version of cranial sacral) therapy and started going

when he was about 4.5 months old. We have gone weekly since. At the

first appt, it seemed like the DO (doctor of Osteopath) was not

doing anything...but we hung in there and tried it again. After the

second appt, it was immediate! My son went from looking to his right

at about 45 degrees to about 80 degrees!!! I could barely believe

it. So needless to say, we are still going and he is over 6 months

now. We just scaled back to once every two weeks now since he seems

to be getting so much better. The tilt is almost gone too. He only

tilts every once in a while now, and he even sleeps with his head

turned to his right (which he never would do before). He just

diagnosed with a really rare type of Craniosynostosis and they are

still recommending (passive)helmet therapy since the closure is at

the base of the skull and are not sure about doing surgery on that

area. They think it may be too risky.

Anyways, my point is this; we too are getting a helmet today which

is a passive helmet and they do not require many adjustments if any

is what the Orthostist said to us. It is an adjust as needed kind of

helmet since it does not put any pressure on any part of the skull,

it just allows the head to grow into the shape of the helmet. He

said it would be loose at first and it would get tighter over time

as his head grows into it. We would just go into see him if there

was red spots that dont go away etc. Do you know how experienced

your Orthostist is? I believe that is the key to getting good

treatment. I know that our does about 200 helmets a year and has

been doing them for 25 years (the clarren helmet). So I would check

into that too. I know that may not be exactly what you were asking,

but hopefully that will give you some things to look into. If you

want to know more about Osteopath treatment, I just did a search for

them in my area (seattle) and then looked for one that has

experience with infants. Our DO is great and I cannot imagine if we

never looked into this now. I hope this helps and Good Luck!! Let me

know if you do try the Osteopath or cranial sacral.

Lynne (mom to Huntley) 6 months

Tort, Plagio, and Squamosal Synostosis(cranio)

>

> Hi. My name is Lindy & my husband & I live in Kernersville, NC.

My

> son, who is now almost 5 months old was diagnosed with

> Plagio & tort about a month ago. (This was after I called his Dr

&

> told them I thought he had tort and I wanted him seen. Although I

> had just been at the Dr 2 weeks prior, nothing was said to me

about

> it!?)

> Anyways, he started PT in July for the tort & it is no better.

> Today his PT told me that she wants to find out if he should get a

> neck brace or surgery to correct the tort because there is not

much

> change since the PT started. Has anyone had any experience with a

> neck brace or surgery for tort? I have done searches on the

> internet & cannot find any info on it!

> My son was also fitted with a blue helmet by a Plastic surgeon

which

> he has now had for about 4 weeks. It says Danmar Products on the

> back of the helmet but that is all I know. I see alot of posts on

> Star bands & doc bands but I think what got is basically

> an " over the counter " helmet. They basically put it on his head &

> then put foam inside to fit it to his head. This makes me a

little

> nervous since they don't want to see him for 8 weeks & I have no

> idea if the helmet is fitted to his head correctly. It always

looks

> crooked but they told me that is normal since his head is

> crooked?!? It is getting tighter since he is growing but I have

no

> idea if it's doing it's job.

> I would appreciate any input!!!

> Thank you!

> Lindy

> Mother to :

> Ava 23 months &

> 5 months

>

[Guest guest]

We live in Winston-Salem, and my daughter was just " fitted " with a pink

Danmar helmet the end of July. I went home and started researching online

and discovered DOC band. That is more what I had in mind. My daugher is 11

months old. Drs kept telling me it would round out on its own (plus she had

tort issues that are finally being addressed now). We got her helmet from

plastic surgery at Wake/Baptist Hospital. We just moved here so I'm not

exactly sure what they call that hospital. I called the office and told

them about the DOCband, they were opposed, I went to Charlotte for a second

opinion (saw Cranial Tech and a neurosurgeon there), was casted Aug 16 and

will get the helmet on the 30th. Every other dr I have seen since my

daughter has been wearing the passive Danmar has laughed and said there are

no real studies showing its effectiveness. I, too, could not believe that

my next appt was going to be 8 weeks later. She keeps wearing the Danmar

until we get the new DOCband. Because of her age, she does not spend enough

time lying on her back to get the pressure needed to shape the back of her

skull in that helmet. I've also been told from other drs that the Danmar

doesn't correct facial assymetries nearly as well as the active helmets. It

has been very confusing and stressful to have so many drs giving me their

differing opinions. Let me know what you think. -Beth

****************************************************************

" When the first baby laughed for the first time, the laugh broke into a

thousand pieces and they all went skipping about, and that was the beginning

of fairies. "

Barrie

[Guest guest]

I forgot to comment about the crooked part...I just made a phone call about

the same thing. My daughter's helmet is so crooked that the left part that

is supposed to fit right in front of her left ear is actually at the corner

of her left eye. It also sits on her left ear which folds it over. The

helmet lady told me she gets lots of phone calls about that and that it is

normal and that as her head begins to shape the helmet will fit better.

Like I said before, with her advanced age (11.5 months), this didn't sit

well with me. People must be getting good results with those helmets (I

assume) since that is all they use around here and that office swears by

them...they are very anti-active helmet. I believe there are too many drs

out there who aren't educated well enough about the DOCband/starband type

helmets. I'm so glad I saw your post and that I'm not the only one who

questions the one size fits all helmet. One more thing, my daughter's

helmet is still so loose, even after all the foam they stuck to the insides.

I made phone calls about that too and she said she'd rather is be loose

than tight. -Beth

****************************************************************

" When the first baby laughed for the first time, the laugh broke into a

thousand pieces and they all went skipping about, and that was the beginning

of fairies. "

Barrie

[Guest guest]

Wow, did you see Dr at Baptist hospital?

Thats very interesting. How did you know who to go to in Charlotte

for a second opinion?

Thanks for the info!

>

> We live in Winston-Salem, and my daughter was just " fitted " with a

pink

> Danmar helmet the end of July. I went home and started

researching online

> and discovered DOC band. That is more what I had in mind. My

daugher is 11

> months old. Drs kept telling me it would round out on its own

(plus she had

> tort issues that are finally being addressed now). We got her

helmet from

> plastic surgery at Wake/Baptist Hospital. We just moved here so

I'm not

> exactly sure what they call that hospital. I called the office

and told

> them about the DOCband, they were opposed, I went to Charlotte for

a second

> opinion (saw Cranial Tech and a neurosurgeon there), was casted

Aug 16 and

> will get the helmet on the 30th. Every other dr I have seen since

my

> daughter has been wearing the passive Danmar has laughed and said

there are

> no real studies showing its effectiveness. I, too, could not

believe that

> my next appt was going to be 8 weeks later. She keeps wearing the

Danmar

> until we get the new DOCband. Because of her age, she does not

spend enough

> time lying on her back to get the pressure needed to shape the

back of her

> skull in that helmet. I've also been told from other drs that the

Danmar

> doesn't correct facial assymetries nearly as well as the active

helmets. It

> has been very confusing and stressful to have so many drs giving

me their

> differing opinions. Let me know what you think. -Beth

>

>

>

> ****************************************************************

> " When the first baby laughed for the first time, the laugh broke

into a

> thousand pieces and they all went skipping about, and that was the

beginning

> of fairies. "

> Barrie

>

[Guest guest]

Do you do the football hold with the baby

?

From: Plagiocephaly [mailto:Plagiocephaly ] On Behalf Of Lindy

Sent: Saturday, August 19, 2006

7:32 AM

Plagiocephaly

Subject: [sPAM][sPAM]Re:

Some suggestions, please...

I do several excercises with . I massage the

muscle in his

neck, massage the inside of his clavical, turn his head the opposite

way of the tilt & hold him stetching the neck.

The helmet just says Danmar products on the back. It is blue.

I will add a picture in the files of my son with it on.

Thanks,Lindy

> >

> > I would see if you can get more information on this helmet. I

got

> to a place

> > that a lot of the group members have heard of but still had an

> issue with

> > the person who made the helmet. I don't much about this helmet

he

> is wearing

> > but I would find out. They did not shape his head with mold or

> scan him with

> > a scanner ? They just got a helmet and inserted foam ? Maybe I

am

> off but I

> > have not heard of that. My son had tort and it took him four

> months of PT

> > but it worked out great. How aggressive is your physical

therapist

> he has ?

> > Are they one top of seeing him weekly and have you doing

exercises

> daily a

> > lot ?

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > _____

> >

> > From: Plagiocephaly@ <mailto:Plagiocephaly%40>

>

> [mailto:Plagiocephaly@ <mailto:Plagiocephaly%40>

> ]

> > On Behalf Of Lindy

> > Sent: Thursday, August 17, 2006 10:04 PM

> > Plagiocephaly@ <mailto:Plagiocephaly%40>

>

> > Subject: Some suggestions, please...

> >

> >

> >

> > Hi. My name is Lindy & my husband & I live in Kernersville, NC.

My

> > son, who is now almost 5 months old was diagnosed with

> > Plagio & tort about a month ago. (This was after I called his Dr

&

> > told them I thought he had tort and I wanted him seen. Although

I

> > had just been at the Dr 2 weeks prior, nothing was said to me

> about

> > it!?)

> > Anyways, he started PT in July for the tort & it is no better.

> > Today his PT told me that she wants to find out if he should get

a

> > neck brace or surgery to correct the tort because there is not

> much

> > change since the PT started. Has anyone had any experience with

a

> > neck brace or surgery for tort? I have done searches on the

> > internet & cannot find any info on it!

> > My son was also fitted with a blue helmet by a Plastic surgeon

> which

> > he has now had for about 4 weeks. It says Danmar Products on the

> > back of the helmet but that is all I know. I see alot of posts

on

> > Star bands & doc bands but I think what got is basically

> > an " over the counter " helmet. They basically put it on his

head

&

> > then put foam inside to fit it to his head. This makes me a

little

> > nervous since they don't want to see him for 8 weeks & I have no

> > idea if the helmet is fitted to his head correctly. It always

> looks

> > crooked but they told me that is normal since his head is

> > crooked?!? It is getting tighter since he is growing but I have

no

> > idea if it's doing it's job.

> > I would appreciate any input!!!

> > Thank you!

> > Lindy

> > Mother to :

> > Ava 23 months &

> > 5 months

> >

>

[Guest guest]

Yeah, I used to do it ALL the time but now that he's getting older

he doesent like it for more than 5 minutes now. He wants to be

upright.

> > >

> > > I would see if you can get more information on this helmet. I

> got

> > to a place

> > > that a lot of the group members have heard of but still had an

> > issue with

> > > the person who made the helmet. I don't much about this helmet

> he

> > is wearing

> > > but I would find out. They did not shape his head with mold or

> > scan him with

> > > a scanner ? They just got a helmet and inserted foam ? Maybe I

> am

> > off but I

> > > have not heard of that. My son had tort and it took him four

> > months of PT

> > > but it worked out great. How aggressive is your physical

> therapist

> > he has ?

> > > Are they one top of seeing him weekly and have you doing

> exercises

> > daily a

> > > lot ?

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > _____

> > >

> > > From: Plagiocephaly@ <mailto:Plagiocephaly%40>

> >

> > [mailto:Plagiocephaly@ <mailto:Plagiocephaly%40>

> > ]

> > > On Behalf Of Lindy

> > > Sent: Thursday, August 17, 2006 10:04 PM

> > > Plagiocephaly@ <mailto:Plagiocephaly%40>

> >

> > > Subject: Some suggestions, please...

> > >

> > >

> > >

> > > Hi. My name is Lindy & my husband & I live in Kernersville,

NC.

> My

> > > son, who is now almost 5 months old was diagnosed with

> > > Plagio & tort about a month ago. (This was after I called his

Dr

> &

> > > told them I thought he had tort and I wanted him seen.

Although

> I

> > > had just been at the Dr 2 weeks prior, nothing was said to me

> > about

> > > it!?)

> > > Anyways, he started PT in July for the tort & it is no better.

> > > Today his PT told me that she wants to find out if he should

get

> a

> > > neck brace or surgery to correct the tort because there is not

> > much

> > > change since the PT started. Has anyone had any experience

with

> a

> > > neck brace or surgery for tort? I have done searches on the

> > > internet & cannot find any info on it!

> > > My son was also fitted with a blue helmet by a Plastic surgeon

> > which

> > > he has now had for about 4 weeks. It says Danmar Products on

the

> > > back of the helmet but that is all I know. I see alot of posts

> on

> > > Star bands & doc bands but I think what got is

basically

> > > an " over the counter " helmet. They basically put it on his

head

> &

> > > then put foam inside to fit it to his head. This makes me a

> little

> > > nervous since they don't want to see him for 8 weeks & I have

no

> > > idea if the helmet is fitted to his head correctly. It always

> > looks

> > > crooked but they told me that is normal since his head is

> > > crooked?!? It is getting tighter since he is growing but I

have

> no

> > > idea if it's doing it's job.

> > > I would appreciate any input!!!

> > > Thank you!

> > > Lindy

> > > Mother to :

> > > Ava 23 months &

> > > 5 months

> > >

> >

>