Re: Ear Offset Worse

[Guest guest]

Hello. I can understand your concerns. It is true with any type of

measuring that there is some room for " human error " , so sometimes a

mesaurement may seem to get worse or vary from time to time.

However, it concerns me a little that the Orthotist is stating that

the helmet is not intended to improve ear asymmetry. A well made

band, being used by an experienced Orthotist can CERTAINLY improve

ear asymmetry. I'm sure that MANY people on this board woul tell

you that. My Daughter wore a Hanger band for 11 weeks and her ear

asymmetry improved from 7mm to 1.5mm. True, the face and ears are

often the last things to correct/improve, but they CAN improve with

a band.

I can't say whether my Daughter's ears were ever " worse " at any

point during her treament because we only did measurements at the

beginning and then end. But, there should be some improvement in

your Son's ears by the end of the banding and they should NOT keep

getting more asymmetrical. If you are concerned about this, I would

certainly speak to the Orthotist about it.

Jen

(25 mo), tort resolved, Hanger Band Grad

(4.5 years)

>

> Hello All,

>

> Our son has been in his Star Band for seven weeks. We took him to

> Children's Healthcare of Atlanta for a measurement and adjustment

> yesterday. The good news is that he has gone from moderate to

mild.

> We are so pleased with his progress.

>

> Yet, we are troubled by the appearance of his ears. We had

suspected

> that his ear offset had worsened and the measurements have

confirmed

> that. When I asked the Orthotist about the increased number his

first

> response sounded almost defensive. He said that the helmet was

not

> intended to improve ear offset and that I should not fixate on

that

> number. The explanation he offered for the increased number was

> twofold. First, he said as the shape of Mike's skull changes, his

> ears are also going to shift. Additionally, he said that the

> measurement is based on a marker placed, on the scanned image of

Mike,

> by the individual completing the measurements. Therefore, there

is

> room for " human error " . In other words no two scans will have the

> marker placed in the exact same spot on Mike's face.

>

> As I said, we are very happy with the progress he has made, but

are

> concerned that the rotation of the helmet on our son's head has

pushed

> his ears further out of alignment. I understand that the helmet

> cannot correct the ear offset issue, but I don't feel confident

that

> it is not worsening it. Before I call the orthotist to discuss

this,

> I was wondering if anyone on the board has had similar experiences.

>

> Thanks for any advice that can be offered.

>

> - ATL

> Mike 9 months, three weeks

> Ben 3 1/2 years

>

[Guest guest]

Jen, Thanks for the reply. I appreciate the information. The explanation provided by the Ortho yesterday seemed counterintuitive. I have a message into the Orthotics group at CHOA to discuss my concerns. , 9 months 3 weeks Ben 3 1/2 years Jen <ronandjenvelez@...> wrote: Hello. I can understand your concerns. It is true with any type of

measuring that there is some room for "human error", so sometimes a mesaurement may seem to get worse or vary from time to time. However, it concerns me a little that the Orthotist is stating that the helmet is not intended to improve ear asymmetry. A well made band, being used by an experienced Orthotist can CERTAINLY improve ear asymmetry. I'm sure that MANY people on this board woul tell you that. My Daughter wore a Hanger band for 11 weeks and her ear asymmetry improved from 7mm to 1.5mm. True, the face and ears are often the last things to correct/improve, but they CAN improve with a band. I can't say whether my Daughter's ears were ever "worse" at any point during her treament because we only did measurements at the beginning and then end. But, there should be some improvement in your Son's ears by the end of the banding and they should NOT keep getting more asymmetrical. If you are concerned about this,

I would certainly speak to the Orthotist about it. Jen (25 mo), tort resolved, Hanger Band Grad (4.5 years)>> Hello All,> > Our son has been in his Star Band for seven weeks. We took him to > Children's Healthcare of Atlanta for a measurement and adjustment > yesterday. The good news is that he has gone from moderate to mild. > We are so pleased with his progress. > > Yet, we are troubled by the appearance of his ears. We had suspected > that his ear offset had worsened and the measurements have confirmed > that. When I asked the Orthotist about the increased number his first > response sounded almost defensive. He said that the helmet was not > intended to improve ear offset

and that I should not fixate on that > number. The explanation he offered for the increased number was > twofold. First, he said as the shape of Mike's skull changes, his > ears are also going to shift. Additionally, he said that the > measurement is based on a marker placed, on the scanned image of Mike, > by the individual completing the measurements. Therefore, there is > room for "human error". In other words no two scans will have the > marker placed in the exact same spot on Mike's face.> > As I said, we are very happy with the progress he has made, but are > concerned that the rotation of the helmet on our son's head has pushed > his ears further out of alignment. I understand that the helmet > cannot correct the ear offset issue, but I don't feel confident that > it is not worsening it. Before I call the orthotist to discuss this, > I was

wondering if anyone on the board has had similar experiences.> > Thanks for any advice that can be offered.> > - ATL> Mike 9 months, three weeks> Ben 3 1/2 years>

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[Guest guest]

there was another mom with this problem a month or so ago. If you

search the messages for " twisted band causing ear offset " you'll find

the thread. I think the mom is " lotspeis " or " lostpeis " .

from what i remember she had a starband and had good correction from a

relatively new ortho, but after 5 mo realized the ears were getting

worse. i think the band had always rotated a lot. after that they

decided to get a docband. not sure how things are going now.

let us know what you find out.

-christine

mom to sydney/ 8.5 mo/ starband 5-31-06

>

> Hello All,

>

> Our son has been in his Star Band for seven weeks. We took him to

> Children's Healthcare of Atlanta for a measurement and adjustment

> yesterday. The good news is that he has gone from moderate to mild.

> We are so pleased with his progress.

>

> Yet, we are troubled by the appearance of his ears. We had suspected

> that his ear offset had worsened and the measurements have confirmed

> that. When I asked the Orthotist about the increased number his first

> response sounded almost defensive. He said that the helmet was not

> intended to improve ear offset and that I should not fixate on that

> number. The explanation he offered for the increased number was

> twofold. First, he said as the shape of Mike's skull changes, his

> ears are also going to shift. Additionally, he said that the

> measurement is based on a marker placed, on the scanned image of Mike,

> by the individual completing the measurements. Therefore, there is

> room for " human error " . In other words no two scans will have the

> marker placed in the exact same spot on Mike's face.

>

> As I said, we are very happy with the progress he has made, but are

> concerned that the rotation of the helmet on our son's head has pushed

> his ears further out of alignment. I understand that the helmet

> cannot correct the ear offset issue, but I don't feel confident that

> it is not worsening it. Before I call the orthotist to discuss this,

> I was wondering if anyone on the board has had similar experiences.

>

> Thanks for any advice that can be offered.

>

> - ATL

> Mike 9 months, three weeks

> Ben 3 1/2 years

>

[Guest guest]

Hi !

I, too, would be suspect of the information you received. Sophie's

ears were probably the #1 reason we did the helmet. They were soooo

bad. One was close to her head in the normal way, and the other was

pushed very far forward and stuck straight out to the side. She

also had several ear infections on the goofy side, so we hoped the

helmet would fix that as well. We were not gauranteed anything

except improvement. Her head did start to round out first. Now,

the ears have made dramatic improvement. (They NEVER got worse that

I noticed.) I don't think we will end up perfect, but at least no

one else will notice the asymmetry.

Please make sure you are comfortable with the treatment your son is

getting. I agree that the scans may be off from time to time due to

human error. The shape of the head that comes up on the scan should

be correct each time. Have your ortho superimpose the first scan

with the current scan. Check the shape and ear placement to see if

things are improving. We could see from the scans that Sophie's

ears were getting more equal even if the numbers didn't show it.

(The numbers are taken from the markers by the ears, not from the

head shape.) Does that make sense?

You can also take pictures at home and check them against 'before'

shots, too. I can e-mail you our before and after pictures that

show how much better her ears are. I really don't think you should

see them getting worse.

It really did take a while to see the ears move. Probably after 4

months. Sophie will have her helmet on for 6 months total. She

started at 10 months old, so don't think it is too late to see

improvement in symmetry.

Go with your gut feeling. Don't give up just to be nice to the

ortho. I even called the head ortho at Orthomerica once because I

didn't feel my concerns were being addressed. He was very receptive.

Good luck and keep on being a GREAT mom!!

- Boise, ID

Sophie - STARhelmet 3/15/06 - scapho, plagio

>

> Hello All,

>

> Our son has been in his Star Band for seven weeks. We took him to

> Children's Healthcare of Atlanta for a measurement and adjustment

> yesterday. The good news is that he has gone from moderate to

mild.

> We are so pleased with his progress.

>

> Yet, we are troubled by the appearance of his ears. We had

suspected

> that his ear offset had worsened and the measurements have

confirmed

> that. When I asked the Orthotist about the increased number his

first

> response sounded almost defensive. He said that the helmet was

not

> intended to improve ear offset and that I should not fixate on

that

> number. The explanation he offered for the increased number was

> twofold. First, he said as the shape of Mike's skull changes, his

> ears are also going to shift. Additionally, he said that the

> measurement is based on a marker placed, on the scanned image of

Mike,

> by the individual completing the measurements. Therefore, there

is

> room for " human error " . In other words no two scans will have the

> marker placed in the exact same spot on Mike's face.

>

> As I said, we are very happy with the progress he has made, but

are

> concerned that the rotation of the helmet on our son's head has

pushed

> his ears further out of alignment. I understand that the helmet

> cannot correct the ear offset issue, but I don't feel confident

that

> it is not worsening it. Before I call the orthotist to discuss

this,

> I was wondering if anyone on the board has had similar experiences.

>

> Thanks for any advice that can be offered.

>

> - ATL

> Mike 9 months, three weeks

> Ben 3 1/2 years

>

[Guest guest]

,

What he said about the skull shifting, causes the ears to move, that

is true but they should be moving towards a correct position not the

opposite way!! Bands can most definately help misaligned ears shift.

Natasha

>

> Hello All,

>

> Our son has been in his Star Band for seven weeks. We took him to

> Children's Healthcare of Atlanta for a measurement and adjustment

> yesterday. The good news is that he has gone from moderate to

mild.

> We are so pleased with his progress.

>

> Yet, we are troubled by the appearance of his ears. We had

suspected

> that his ear offset had worsened and the measurements have

confirmed

> that. When I asked the Orthotist about the increased number his

first

> response sounded almost defensive. He said that the helmet was

not

> intended to improve ear offset and that I should not fixate on

that

> number. The explanation he offered for the increased number was

> twofold. First, he said as the shape of Mike's skull changes, his

> ears are also going to shift. Additionally, he said that the

> measurement is based on a marker placed, on the scanned image of

Mike,

> by the individual completing the measurements. Therefore, there

is

> room for " human error " . In other words no two scans will have the

> marker placed in the exact same spot on Mike's face.

>

> As I said, we are very happy with the progress he has made, but

are

> concerned that the rotation of the helmet on our son's head has

pushed

> his ears further out of alignment. I understand that the helmet

> cannot correct the ear offset issue, but I don't feel confident

that

> it is not worsening it. Before I call the orthotist to discuss

this,

> I was wondering if anyone on the board has had similar experiences.

>

> Thanks for any advice that can be offered.

>

> - ATL

> Mike 9 months, three weeks

> Ben 3 1/2 years

>

[Guest guest]

,

I am sorry you are having this concern. We had a very bad experience with CHOA,

and

they absolutely made my child's facial asymmetry worse. They were defensive,

dismissed

my concerns, and bullied me into keeping a Starband on my child's head even

though

alarm bells were going off.

I finally took my child to Cranial Technologies for a DOCBand and had excellent

treatment.

CHOA has many orthotists, who fit many types of orthotics, operating in many

satellite

locations. My concern is that they are spread too thin and the quality suffers.

Listen to your intuition and do not let them tell you otherwise.

in Atlanta

>

> Hello All,

>

> Our son has been in his Star Band for seven weeks. We took him to

> Children's Healthcare of Atlanta for a measurement and adjustment

> yesterday. The good news is that he has gone from moderate to mild.

> We are so pleased with his progress.

>

> Yet, we are troubled by the appearance of his ears. We had suspected

> that his ear offset had worsened and the measurements have confirmed

> that. When I asked the Orthotist about the increased number his first

> response sounded almost defensive. He said that the helmet was not

> intended to improve ear offset and that I should not fixate on that

> number. The explanation he offered for the increased number was

> twofold. First, he said as the shape of Mike's skull changes, his

> ears are also going to shift. Additionally, he said that the

> measurement is based on a marker placed, on the scanned image of Mike,

> by the individual completing the measurements. Therefore, there is

> room for " human error " . In other words no two scans will have the

> marker placed in the exact same spot on Mike's face.

>

> As I said, we are very happy with the progress he has made, but are

> concerned that the rotation of the helmet on our son's head has pushed

> his ears further out of alignment. I understand that the helmet

> cannot correct the ear offset issue, but I don't feel confident that

> it is not worsening it. Before I call the orthotist to discuss this,

> I was wondering if anyone on the board has had similar experiences.

>

> Thanks for any advice that can be offered.

>

> - ATL

> Mike 9 months, three weeks

> Ben 3 1/2 years

>

[Guest guest]

Hi ,

We had the exact same experience. My son was in a STARband for 5

months and while the back of his head showed considerable

improvement, the facial asymmetry got worse, and I suspect the ear

offset got worse too. I had the same reaction from the orthotist and

the same explanation that the numbers are unreliable. We went to

Cranial Therapies in Southern California (a satellite of Cranial

Technologies) for a second opinion. The orthotist/therapist

would/could not comment on whether the original band had made his

ears worse. (However, he did have a lot of other negative things to

say about the band...) His original ear offset number was 4mm and

the last few scans were 10 and 12mm. CT measured the offset at 6mm,

so I have no idea which numbers to trust. Either way, to my

untrained eye it appeares that his head has grown in the direction of

the rotation. His band always rotated so much so that his ear would

fold forward which I now know is a no-no. (I should have been paying

more attention to this site...) The orthotist/therapist also

diagnosed my son with untreated torticollis. When he was an infant

he couldn't turn left and the pedi just told us to get him to look

left as much as possible. We did and he improved, but he could never

turn as far to the left as he could to the right. I repeatedly

brought it up to the pedi and the plastic surgeon and they kept

telling me he was 'fine' and did not need physical therapy. The

orthotist/therapist said this was most likely the cause of his facial

asymmetries (he didn't mention if ear offset could be made worse by

this or not). We're now in therapy (finally!) and we have gotten a

new DOCband. The fit between the STARband and DOCband is like night

and day! The (new) plastic surgeon we saw last week said that in his

opinion both bands are fine for rounding out the back of the head,

but he thought the DOCband is better at treating facial asymmetries.

So, to make a long story short, I don't know if the band made his

ears worse or not, but I feel we have a much better chance of

correcting them with the DOCband. Hope that helps!

Sheila, mom to , 12 months, STARband 3/5-8/5, DOCband 9/5-?

> >

> > Hello All,

> >

> > Our son has been in his Star Band for seven weeks. We took him

to

> > Children's Healthcare of Atlanta for a measurement and adjustment

> > yesterday. The good news is that he has gone from moderate to

mild.

> > We are so pleased with his progress.

> >

> > Yet, we are troubled by the appearance of his ears. We had

suspected

> > that his ear offset had worsened and the measurements have

confirmed

> > that. When I asked the Orthotist about the increased number his

first

> > response sounded almost defensive. He said that the helmet was

not

> > intended to improve ear offset and that I should not fixate on

that

> > number. The explanation he offered for the increased number was

> > twofold. First, he said as the shape of Mike's skull changes,

his

> > ears are also going to shift. Additionally, he said that the

> > measurement is based on a marker placed, on the scanned image of

Mike,

> > by the individual completing the measurements. Therefore, there

is

> > room for " human error " . In other words no two scans will have

the

> > marker placed in the exact same spot on Mike's face.

> >

> > As I said, we are very happy with the progress he has made, but

are

> > concerned that the rotation of the helmet on our son's head has

pushed

> > his ears further out of alignment. I understand that the helmet

> > cannot correct the ear offset issue, but I don't feel confident

that

> > it is not worsening it. Before I call the orthotist to discuss

this,

> > I was wondering if anyone on the board has had similar

experiences.

> >

> > Thanks for any advice that can be offered.

> >

> > - ATL

> > Mike 9 months, three weeks

> > Ben 3 1/2 years

> >

>

[Guest guest]

Our Son is 14 months. We had him fitted for a Star band two months

ago, and I swear his asymetry and ears have gotten worse. I don't

know if it is me just being paranoid, or if it really is the helmet.

I am getting an appointment with another cranio/facial specialist for

a second opinion. I just saw his new pediatrition and he assured me

that the helmet could not make his assymetry worse. His helmet is not

tight on his head, but fits snuggly and his flat spot seems to be

getting a little better. My doctor told me that he can hardly notice

that his head is flat in one spot, but when I look at Noah in the

mirror I can see it a lot more than before. Do you think it is

because I keep focusing on it, or do any of you think the helmet may

be making it worse?

[Guest guest]

I wish I knew the answer. I too could swear that my son's ears have

gotten worse but I can't get a straight answer on the measurements.

The only measurements from 'before' were done by the STARscaner which

is not reliable. His whole head (when you look from the top down)

appears to be rotated the same direction as his helmet and he looks a

lot worse in the mirror. I kept telling myself that I was only

noticing it now that I wasn't so focused on the back of his head (which

has been rounding out nicely), but when I compare pictures from before

they show that his facial asymmetry has gotten worse and that his head

looks more lopsided, so I don't think I'm going totally crazy. I was

told by the CT orthotist that his facial asymmetry was possibly caused

by his undiagnosed/untreated torticollis, so now I don't know if it was

the torticollis or the band. If you can get a straight answer from the

specialist, please post!! The last one I saw said that he wasn't a

torticollis specialist and referred me to a physical therapist. We

have an appointment with her next Friday, but I don't expect that

she'll be able to give me an answer either...

Sheila, mom to , 12 months, STARband 3/5-8/5, DOCband 9/5-?

>

> Our Son is 14 months. We had him fitted for a Star band two months

> ago, and I swear his asymetry and ears have gotten worse. I don't

> know if it is me just being paranoid, or if it really is the helmet.

> I am getting an appointment with another cranio/facial specialist for

> a second opinion. I just saw his new pediatrition and he assured me

> that the helmet could not make his assymetry worse. His helmet is

not

> tight on his head, but fits snuggly and his flat spot seems to be

> getting a little better. My doctor told me that he can hardly notice

> that his head is flat in one spot, but when I look at Noah in the

> mirror I can see it a lot more than before. Do you think it is

> because I keep focusing on it, or do any of you think the helmet may

> be making it worse?

>

[Guest guest]

My husband and I suspected that Mike's assymetry was worse at the beginning of September, just before Labor Day weekend. The assymetry seemed more pronounced in the mirror. I addressed my suspicions with an orthotist over the phone the Tuesday after Labor Day and was told that if the helmet wasn't leaving a red mark that would not fade or that if the helmet wasn't rotating significantly we shouldn't worry about it. Rotating significantly must mean moving more than 1/2 inch. This past Tuesday, the scanned Mike (only because I demanded it) and our suspicions were confirmed by the ear offset numbers. My concerns were dismissed yet again. Today, I spoke with the orthotist we met with. He once again told me that the Star Band is not intended to correct facial assymetry. He also said that he does not rely on the numbers. Instead he

uses the scanned images themseleves (one superimposed on the other) as evidence that the head shape is improving. He is going to send me an image that shows Mike's original scan (including ears) with the new scan (including ears) superimposed over it. Until I receive that image, Mike will not be wearing the helmet. I feel so frustrated at this point. Children's Healthcare of Atlanta is the only provider of Cranial Remolding Therapy in this area. The closest Cranial Technologies location is in Charlotte, which is about a five hour drive from where I live. Additionally, it looks like our insurance provider is going to deny coverage of the helmet. So we just aren't in a position to pay for a second helmet and travel five hours every other week for adjustments. On the other hand, I do not want Mike to endure any potential vision or speech problems that might related to facial assymetry if they can

be corrected by a helmet. We are taking Mike to a Pediatric Nuerosurgeon in two weeks for an evaluation. Perhaps he can provide us with some well informed input. In conclusion, I don't think it is perception. You see your son every day, you have been able to recognize the improved area. If you have the option of getting another opionion go for it. You and your husband are your son's only advocate. Good luck! obnjeannette <robnjeannette@...> wrote: Our Son is 14 months. We had him fitted for a Star band two months ago, and I swear his asymetry and ears have gotten worse. I don't know if it is me just being paranoid, or if it really is the helmet. I am getting an appointment with another cranio/facial specialist for a second opinion. I just saw his new pediatrition and he assured me that the helmet could not make his assymetry worse. His helmet is not tight on his head, but fits snuggly and his flat spot seems to be getting a little better. My doctor told me that he can hardly notice that his head is flat in one spot, but when I look at Noah in the mirror I can see it a lot more than before. Do you think it is because I keep focusing on it, or do any of you think the helmet may be making it worse?

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