New here...looking for advice

[Guest guest]

Hi Everyone,

I'm new to the group, and from what I've read this seems like a very

well-informed and supportive group. I'm hoping you can give me some good

advice. I'm sure my situation is not uncommon... I'm just not sure how to go

forward, or how much to push this. Here's the story, sorry it's so long.

My son Zach is currently 4 mo, with tort which was not severe enough to meet EI

standards for PT treatment. His ROM is now almost full, and his tilt is slight.

He prefers to look left, and because of that he has some flattening on the left

side. His flat area is way on the side, right behind his ear.

I'm concerned about his head shape (my dh and mom think I'm worried about

nothing), so I took him to CT for an eval. Here are his measurements from them.

CVA 8mm

CI 83%

mid face 3mm

skull base 6mm

The technician at CT said that although Zach's CVA puts him in the mild

category, he (the tech) would consider him moderate because of the facial

asymmetry. He recommended banding, but seemed supportive when I said we might

try repo for another month and see where we're at then. I see the ear

asymmetry, but I have trouble seeing it in the eyes or cheeks (which the tech

said he noticed right away).

We took this to our pedi, and he said

1- He doesn't see any facial asymmetry, only a little flattening on one side,

which he thinks will round out on its own by the time Zach is 2 or 3, although

he did acknowledge that the tort makes it more challenging.

2- He doesn't really trust CT because of an experience with another patient.

Apparently the baby's father said the technician at CT told him that because

insurance often doesn't cover the bands, that they could fudge the numbers to

make it more likely to be approved. NOTE: I have no idea if CT actually said

that or not, but the report from the dad has influenced our dr's opinion of

them.

3- When I suggested to him that we try repo for a month and go back for another

eval, he didn't say not to, but wasn't enthusiastic.

My dh thinks we should just go with what the pedi says, and is skeptical of CT,

since they are trying to sell bands. I understand his pov, but I'm not

convinced it will just get better.

I am trying to decide if I should schedule an eval at Children's in Chicago

(about 1.25 hour drive, not too bad). I know they have a STARscanner, and I'm

thinking a scan report may be more help with the pedi and dh, as well as just

getting another opinion on whether we should band. Any thoughts on this? Does

anyone have experience with them, did you need a referral to get in, or could

you just make an appt because you were concerned? Maybe I should try to get my

husband to come along?

I'm just trying to figure out the best thing to do for Zach. I don't want to be

overly critical of his head, but I worry that if we don't pursue it, I'll regret

it. Baldness runs quite strong on my side (all male relatives are bald, my

brother started losing his hair at 20), and I also worry that facial assymmetry

may be more visible when the baby fat padding is gone. I know all heads are

different, but what do you think? Would (or did) you band if your baby had

these numbers? Any advice for how to get our dr (and my family) on board?

Thanks,

-Jen

[Guest guest]

Welcome, Jen!

Isn't it funny how a critical pediatrician will toss around the

" repo " idea like it's a proven medical treatment, rather than a total

pain in your ass that probably won't work? I don't mean " probably "

because there's been no research -- it has been studied, and

statistically, you are about 80% unlikely to be satisfied, IIRC.

I had twins. Treated one, let the other go (not so much because I

expected improvement, but because it didn't look bad), and I don't

regret either decision. I do very much regret delaying treatment for

the former, however, based on pediatrician advice, because there is

also science indicating that starting early is the most important

thing, and we did not get good results.

So if you want to put your faith in a clinician, I'd go with the CT

technician over your pediatrician any day. It is harder for a

layperson to see the problem when the fontanelles are still open.

You see more of the brain shape, and less of the bone shape. Problem

is, the helmet has the most effect when the fontanelles are open.

Bottom line: if the ear alignment bothers you now, jump on it now.

--

Thad Launderville

town, VT

Clara age 2, STARband '10

On Jul 24, 2010, at 11:07 AM, jenchiblu wrote:

>

> Hi Everyone,

>

> I'm new to the group, and from what I've read this seems like a

> very well-informed and supportive group. I'm hoping you can give me

> some good advice. I'm sure my situation is not uncommon... I'm just

> not sure how to go forward, or how much to push this. Here's the

> story, sorry it's so long.

>

> My son Zach is currently 4 mo, with tort which was not severe

> enough to meet EI standards for PT treatment. His ROM is now almost

> full, and his tilt is slight. He prefers to look left, and because

> of that he has some flattening on the left side. His flat area is

> way on the side, right behind his ear.

>

> I'm concerned about his head shape (my dh and mom think I'm worried

> about nothing), so I took him to CT for an eval. Here are his

> measurements from them.

>

> CVA 8mm

> CI 83%

> mid face 3mm

> skull base 6mm

>

> The technician at CT said that although Zach's CVA puts him in the

> mild category, he (the tech) would consider him moderate because of

> the facial asymmetry. He recommended banding, but seemed supportive

> when I said we might try repo for another month and see where we're

> at then. I see the ear asymmetry, but I have trouble seeing it in

> the eyes or cheeks (which the tech said he noticed right away).

>

> We took this to our pedi, and he said

> 1- He doesn't see any facial asymmetry, only a little flattening on

> one side, which he thinks will round out on its own by the time

> Zach is 2 or 3, although he did acknowledge that the tort makes it

> more challenging.

> 2- He doesn't really trust CT because of an experience with another

> patient. Apparently the baby's father said the technician at CT

> told him that because insurance often doesn't cover the bands, that

> they could fudge the numbers to make it more likely to be approved.

> NOTE: I have no idea if CT actually said that or not, but the

> report from the dad has influenced our dr's opinion of them.

> 3- When I suggested to him that we try repo for a month and go back

> for another eval, he didn't say not to, but wasn't enthusiastic.

>

> My dh thinks we should just go with what the pedi says, and is

> skeptical of CT, since they are trying to sell bands. I understand

> his pov, but I'm not convinced it will just get better.

>

> I am trying to decide if I should schedule an eval at Children's in

> Chicago (about 1.25 hour drive, not too bad). I know they have a

> STARscanner, and I'm thinking a scan report may be more help with

> the pedi and dh, as well as just getting another opinion on whether

> we should band. Any thoughts on this? Does anyone have experience

> with them, did you need a referral to get in, or could you just

> make an appt because you were concerned? Maybe I should try to get

> my husband to come along?

>

> I'm just trying to figure out the best thing to do for Zach. I

> don't want to be overly critical of his head, but I worry that if

> we don't pursue it, I'll regret it. Baldness runs quite strong on

> my side (all male relatives are bald, my brother started losing his

> hair at 20), and I also worry that facial assymmetry may be more

> visible when the baby fat padding is gone. I know all heads are

> different, but what do you think? Would (or did) you band if your

> baby had these numbers? Any advice for how to get our dr (and my

> family) on board?

>

> Thanks,

> -Jen

>

>

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[Guest guest]

Jen, I have a few comments on your situation. First, it is very familiar so you

can gain from the experience of others here. Maybe you can use that fact to help

convince your husband and extended family. This is a group that probably knows

far more than your Dr. about this subject.

I think going to get the starscanner scan is your best bet. It will be more

objective than hand measurements from CT. That said, if CT were going to fudge

the numbers for insurance purposes, they'd need to inflate the CVA which is not

so bad in your case, rather than the skull base asymmetry which is causing the

facial asymmetry.

I couldn't see my baby's facial asymmetry until she was older and lost weight.

We waited too long because our ped like most said " I've seen worse " . At 4 months

I let them and her PT put us off. At 6 months we followed the advice to go to a

neurosurgeon who, of course, had " seen worse " . With all the time it took to

schedule appts with specialists and everything else, we didn't get a helmet

until 9 months and after 6 months in 2 of them, we still have visible asymmetry.

And I have the guilt and frustration that goes with it.

I advise you to tell your mother and extended family that you appreciate their

concern, but you need to make decisions for your child. They are welcome to

support your choices or keep their ill-informed opinions to themselves. You

might as well make this stand now because this will not be the last issue they

want to instruct you on. Everyone wants to tell you how to raise your kid. Put

an end to it early for your own sake. Tell your husband to get on board because

you don't want this to come between you later. The fathers always seem to want

to pretend everything is ok and the mothers always worry. The dads always come

around once the helmet is on and they see it's not such a big deal.

From reading this board you will find that nobody regrets getting a helmet. They

only regret waiting to do so. I worried what people would think. How would they

treat my baby? What would it do to her to have such early social interaction be

filled with people pointing and staring? My fears were never realized. I rode

the subway with her in NYC several times a week for 6 months and nobody ever

made a nasty comment. People just talked to her and smiled like they would with

any baby. She is now more friendly and outgoing than any of my friends' babies.

I think it's because it actually drew more people to her. Many strangers

actually told me how they wish they had gotten a helmet for their child but they

were told it would correct itself. It doesn't.

The hardest part by far is making the decision. The neurosurgeon who'd seen

worse said something important. He said that it takes babies a day to get used

to the helmet. It takes parents a week. And it takes grandparents a month. Your

job as mother is to do what's right for your baby, not what you family's

knee-jerk reaction dictates. My new PT also said something important. She said

the mom of one of her patients put it best by saying " this is my worst case " . It

doesn't matter what the doctors or anyone else has seen. It's up to you to

determine if you feel something is off. If it is, deal with it sooner rather

than later. You'll get faster and better results.

Good luck,

ED

>

> Hi Everyone,

>

> I'm new to the group, and from what I've read this seems like a very

well-informed and supportive group. I'm hoping you can give me some good

advice. I'm sure my situation is not uncommon... I'm just not sure how to go

forward, or how much to push this. Here's the story, sorry it's so long.

>

> My son Zach is currently 4 mo, with tort which was not severe enough to meet

EI standards for PT treatment. His ROM is now almost full, and his tilt is

slight. He prefers to look left, and because of that he has some flattening on

the left side. His flat area is way on the side, right behind his ear.

>

> I'm concerned about his head shape (my dh and mom think I'm worried about

nothing), so I took him to CT for an eval. Here are his measurements from them.

>

> CVA 8mm

> CI 83%

> mid face 3mm

> skull base 6mm

>

> The technician at CT said that although Zach's CVA puts him in the mild

category, he (the tech) would consider him moderate because of the facial

asymmetry. He recommended banding, but seemed supportive when I said we might

try repo for another month and see where we're at then. I see the ear

asymmetry, but I have trouble seeing it in the eyes or cheeks (which the tech

said he noticed right away).

>

> We took this to our pedi, and he said

> 1- He doesn't see any facial asymmetry, only a little flattening on one side,

which he thinks will round out on its own by the time Zach is 2 or 3, although

he did acknowledge that the tort makes it more challenging.

> 2- He doesn't really trust CT because of an experience with another patient.

Apparently the baby's father said the technician at CT told him that because

insurance often doesn't cover the bands, that they could fudge the numbers to

make it more likely to be approved. NOTE: I have no idea if CT actually said

that or not, but the report from the dad has influenced our dr's opinion of

them.

> 3- When I suggested to him that we try repo for a month and go back for

another eval, he didn't say not to, but wasn't enthusiastic.

>

> My dh thinks we should just go with what the pedi says, and is skeptical of

CT, since they are trying to sell bands. I understand his pov, but I'm not

convinced it will just get better.

>

> I am trying to decide if I should schedule an eval at Children's in Chicago

(about 1.25 hour drive, not too bad). I know they have a STARscanner, and I'm

thinking a scan report may be more help with the pedi and dh, as well as just

getting another opinion on whether we should band. Any thoughts on this? Does

anyone have experience with them, did you need a referral to get in, or could

you just make an appt because you were concerned? Maybe I should try to get my

husband to come along?

>

> I'm just trying to figure out the best thing to do for Zach. I don't want to

be overly critical of his head, but I worry that if we don't pursue it, I'll

regret it. Baldness runs quite strong on my side (all male relatives are bald,

my brother started losing his hair at 20), and I also worry that facial

assymmetry may be more visible when the baby fat padding is gone. I know all

heads are different, but what do you think? Would (or did) you band if your

baby had these numbers? Any advice for how to get our dr (and my family) on

board?

>

> Thanks,

> -Jen

>

[Guest guest]

Hello Jen, Welcome to the group. Since your son is only 4 months, that gives you some time to make up your mind about what to do. You could always try the repositioning and band at 6 months, if you think your son really needs it. Yes, it does feel comforting when someone other than the band provider says your son needs a band. My daughter's ped also did not like Cranial Tech(VA) because she said they were too pushy. Although I did not seek band therapy from CT for my daughter, I will say their measurements were in fact, right in line with measurements from the neurosurgeon and band provider that I chose. As far as the CT tech noticing the asymmetry--they deal with this everyday, so it's no surprise that they can spot things others can't. However, if you as Zach's parent can't see the

asymmetry, I'd say it has to be mild. Although, I had not noticed my daughter's facial asymmetry, I easily saw it in the CT photos. I was more focused on her misspahen head, which was very obvious.My daughter's plagio was classified as severe and I think the decision of whether to band is more difficult in the milder cases. This decision is even more difficult when you know there's just a small window of opportunity to band. When I met with the orthotist who banded my daughter, I recall him saying that he'd banded babies more severe than mine, but he'd also banded babies much less severe. If your ped doesn't trust CT, then you could always have a consult w/ another band provider to see if their recommendations are in line with CT and discuss the results with the ped. While not enthusiastic, it sounds at least like your ped will work with you if you push the issue.Hope this helps. Good luck and keep us posted.-Amy

From: jenchiblu <jen330@...>Plagiocephaly Sent: Sat, July 24, 2010 11:07:55 AMSubject: New here...looking for advice

Hi Everyone,

I'm new to the group, and from what I've read this seems like a very well-informed and supportive group. I'm hoping you can give me some good advice. I'm sure my situation is not uncommon... I'm just not sure how to go forward, or how much to push this. Here's the story, sorry it's so long.

My son Zach is currently 4 mo, with tort which was not severe enough to meet EI standards for PT treatment. His ROM is now almost full, and his tilt is slight. He prefers to look left, and because of that he has some flattening on the left side. His flat area is way on the side, right behind his ear.

I'm concerned about his head shape (my dh and mom think I'm worried about nothing), so I took him to CT for an eval. Here are his measurements from them.

CVA 8mm

CI 83%

mid face 3mm

skull base 6mm

The technician at CT said that although Zach's CVA puts him in the mild category, he (the tech) would consider him moderate because of the facial asymmetry. He recommended banding, but seemed supportive when I said we might try repo for another month and see where we're at then. I see the ear asymmetry, but I have trouble seeing it in the eyes or cheeks (which the tech said he noticed right away).

We took this to our pedi, and he said

1- He doesn't see any facial asymmetry, only a little flattening on one side, which he thinks will round out on its own by the time Zach is 2 or 3, although he did acknowledge that the tort makes it more challenging.

2- He doesn't really trust CT because of an experience with another patient. Apparently the baby's father said the technician at CT told him that because insurance often doesn't cover the bands, that they could fudge the numbers to make it more likely to be approved. NOTE: I have no idea if CT actually said that or not, but the report from the dad has influenced our dr's opinion of them.

3- When I suggested to him that we try repo for a month and go back for another eval, he didn't say not to, but wasn't enthusiastic.

My dh thinks we should just go with what the pedi says, and is skeptical of CT, since they are trying to sell bands. I understand his pov, but I'm not convinced it will just get better.

I am trying to decide if I should schedule an eval at Children's in Chicago (about 1.25 hour drive, not too bad). I know they have a STARscanner, and I'm thinking a scan report may be more help with the pedi and dh, as well as just getting another opinion on whether we should band. Any thoughts on this? Does anyone have experience with them, did you need a referral to get in, or could you just make an appt because you were concerned? Maybe I should try to get my husband to come along?

I'm just trying to figure out the best thing to do for Zach. I don't want to be overly critical of his head, but I worry that if we don't pursue it, I'll regret it. Baldness runs quite strong on my side (all male relatives are bald, my brother started losing his hair at 20), and I also worry that facial assymmetry may be more visible when the baby fat padding is gone. I know all heads are different, but what do you think? Would (or did) you band if your baby had these numbers? Any advice for how to get our dr (and my family) on board?

Thanks,

-Jen

[Guest guest]

Hi Jen,

Your son's case is very similar to my daughter's - even with what CT told us!

Her beginning measurements were 10 mm CVA, 4 mm mid-face and 5 mm skull base. We

were told that the head asymmetries were on the cut-off of still being mild, but

with the facial asymmetry, they would categorize her as " moderate. "

We did band Lexi and actually went to the evaluation with a script in hand

because I already knew I wanted to band and I wanted CT. I personally never felt

like anyone at CT in Dallas was being dishonest and I certainly never felt like

they were just trying to sell bands. In fact, I asked about a second band when

Lexi graduated (if it would help w/her facial asymmetry) and it was not

recommended. Then I called back some months later to see if it would be worth

the drive (we're almost nine hours away) to get a second opinion on a second

band, and a different tech (our tech, unfortunately, is no longer with CT)

pulled Lexi's exit scans and data and told us CT would absolutely not band her

again.

Lexi also had tort - and it took EIGHT MONTHS of physical therapy to resolve the

tilt and ROM issues, so there's no way repositioning would have ever worked for

her!

So...this is just one mom's experience, but I really do feel like it's a good,

reputable company and Lexi had good results with her band (graduated with 3 mm

CVA, 3 mm mid-face and 3 mm skull base) and only wore the band for seven weeks.

I have absolutely no regrets.

HTH and good luck with your decision,

Sharyn

Lexi DOC Band graduate 02/2010

>

> >

> > Hi Everyone,

> >

> > I'm new to the group, and from what I've read this seems like a

> > very well-informed and supportive group. I'm hoping you can give me

> > some good advice. I'm sure my situation is not uncommon... I'm just

> > not sure how to go forward, or how much to push this. Here's the

> > story, sorry it's so long.

> >

> > My son Zach is currently 4 mo, with tort which was not severe

> > enough to meet EI standards for PT treatment. His ROM is now almost

> > full, and his tilt is slight. He prefers to look left, and because

> > of that he has some flattening on the left side. His flat area is

> > way on the side, right behind his ear.

> >

> > I'm concerned about his head shape (my dh and mom think I'm worried

> > about nothing), so I took him to CT for an eval. Here are his

> > measurements from them.

> >

> > CVA 8mm

> > CI 83%

> > mid face 3mm

> > skull base 6mm

> >

> > The technician at CT said that although Zach's CVA puts him in the

> > mild category, he (the tech) would consider him moderate because of

> > the facial asymmetry. He recommended banding, but seemed supportive

> > when I said we might try repo for another month and see where we're

> > at then. I see the ear asymmetry, but I have trouble seeing it in

> > the eyes or cheeks (which the tech said he noticed right away).

> >

> > We took this to our pedi, and he said

> > 1- He doesn't see any facial asymmetry, only a little flattening on

> > one side, which he thinks will round out on its own by the time

> > Zach is 2 or 3, although he did acknowledge that the tort makes it

> > more challenging.

> > 2- He doesn't really trust CT because of an experience with another

> > patient. Apparently the baby's father said the technician at CT

> > told him that because insurance often doesn't cover the bands, that

> > they could fudge the numbers to make it more likely to be approved.

> > NOTE: I have no idea if CT actually said that or not, but the

> > report from the dad has influenced our dr's opinion of them.

> > 3- When I suggested to him that we try repo for a month and go back

> > for another eval, he didn't say not to, but wasn't enthusiastic.

> >

> > My dh thinks we should just go with what the pedi says, and is

> > skeptical of CT, since they are trying to sell bands. I understand

> > his pov, but I'm not convinced it will just get better.

> >

> > I am trying to decide if I should schedule an eval at Children's in

> > Chicago (about 1.25 hour drive, not too bad). I know they have a

> > STARscanner, and I'm thinking a scan report may be more help with

> > the pedi and dh, as well as just getting another opinion on whether

> > we should band. Any thoughts on this? Does anyone have experience

> > with them, did you need a referral to get in, or could you just

> > make an appt because you were concerned? Maybe I should try to get

> > my husband to come along?

> >

> > I'm just trying to figure out the best thing to do for Zach. I

> > don't want to be overly critical of his head, but I worry that if

> > we don't pursue it, I'll regret it. Baldness runs quite strong on

> > my side (all male relatives are bald, my brother started losing his

> > hair at 20), and I also worry that facial assymmetry may be more

> > visible when the baby fat padding is gone. I know all heads are

> > different, but what do you think? Would (or did) you band if your

> > baby had these numbers? Any advice for how to get our dr (and my

> > family) on board?

> >

> > Thanks,

> > -Jen

> >

> >

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[Guest guest]

Welcome to the group. You can try repo, but try to measure your progress. Take

pictures every week to compare and see if in a few weeks things are better,

worse or the same. Take a top view with wet hair (if he has hair) and any other

views that show the plagio. Also you may want to look at his face in the mirror

- this usually shows the facial asymmetry the most.

I do know of people on the board who have banded at 7 or 8 mm, however 10 is not

an uncommon " guideline " . It really depends on the baby and the parents.

-christine

sydney, 4.5 yr, starband grad

>

> Hi Everyone,

>

> I'm new to the group, and from what I've read this seems like a very

well-informed and supportive group. I'm hoping you can give me some good

advice. I'm sure my situation is not uncommon... I'm just not sure how to go

forward, or how much to push this. Here's the story, sorry it's so long.

>

> My son Zach is currently 4 mo, with tort which was not severe enough to meet

EI standards for PT treatment. His ROM is now almost full, and his tilt is

slight. He prefers to look left, and because of that he has some flattening on

the left side. His flat area is way on the side, right behind his ear.

>

> I'm concerned about his head shape (my dh and mom think I'm worried about

nothing), so I took him to CT for an eval. Here are his measurements from them.

>

> CVA 8mm

> CI 83%

> mid face 3mm

> skull base 6mm

>

> The technician at CT said that although Zach's CVA puts him in the mild

category, he (the tech) would consider him moderate because of the facial

asymmetry. He recommended banding, but seemed supportive when I said we might

try repo for another month and see where we're at then. I see the ear

asymmetry, but I have trouble seeing it in the eyes or cheeks (which the tech

said he noticed right away).

>

> We took this to our pedi, and he said

> 1- He doesn't see any facial asymmetry, only a little flattening on one side,

which he thinks will round out on its own by the time Zach is 2 or 3, although

he did acknowledge that the tort makes it more challenging.

> 2- He doesn't really trust CT because of an experience with another patient.

Apparently the baby's father said the technician at CT told him that because

insurance often doesn't cover the bands, that they could fudge the numbers to

make it more likely to be approved. NOTE: I have no idea if CT actually said

that or not, but the report from the dad has influenced our dr's opinion of

them.

> 3- When I suggested to him that we try repo for a month and go back for

another eval, he didn't say not to, but wasn't enthusiastic.

>

> My dh thinks we should just go with what the pedi says, and is skeptical of

CT, since they are trying to sell bands. I understand his pov, but I'm not

convinced it will just get better.

>

> I am trying to decide if I should schedule an eval at Children's in Chicago

(about 1.25 hour drive, not too bad). I know they have a STARscanner, and I'm

thinking a scan report may be more help with the pedi and dh, as well as just

getting another opinion on whether we should band. Any thoughts on this? Does

anyone have experience with them, did you need a referral to get in, or could

you just make an appt because you were concerned? Maybe I should try to get my

husband to come along?

>

> I'm just trying to figure out the best thing to do for Zach. I don't want to

be overly critical of his head, but I worry that if we don't pursue it, I'll

regret it. Baldness runs quite strong on my side (all male relatives are bald,

my brother started losing his hair at 20), and I also worry that facial

assymmetry may be more visible when the baby fat padding is gone. I know all

heads are different, but what do you think? Would (or did) you band if your

baby had these numbers? Any advice for how to get our dr (and my family) on

board?

>

> Thanks,

> -Jen

>

[Guest guest]

I must say I agree with Thad. I think it is best to treat as early as possible, and also that CT is more of an expert on this than any pediatrician. I took my son to his pediatrician at 4 months old and was told to reposition, they didn't notice assymetry though neither did I so I don't know if they were looking for it. They are only 6 miles from the Oakbrook CT and didn't know it existed. I found CT on my own from my twin group. We went for an evaluation and the photos were alarming to me. The assymetry in my sons ears was sooooo noticeable. My family thought I was crazy until they saw his photos and then they said, yeah, do it. By 4 and a half months he had his band. It has not been a problem at all. I forget he even has it, so if I get a person saying to me whats wrong, I usually respond first what do you mean?

My sons measurements were 10, 6 and 6. I recently took his twin in just to be safe and know for sure she was fine because I didn't see any flattening or assymetry on her at all. She was recommended a band as well to my surprise. Her measurements were 6, 3, and 4. We were told it was really up to us whether or not to band but CT felt they could achieve improvement. The insurance covered it, so who was I to say no. I already knew the process and hope she does as well as him. We pick up her band on Wednesday.

In terms of repositioning, I was told by CT that repositioning may allow my sons flat spot to round out but would not correct the assymetry. I truly believe them. After 6 weeks in the band my sons flat spot has popped out. To me it is perfect now, CT says their is room for more improvement, but to me his shape looks GREAT. However, his ears are still off, noticeably. I like to believe that the way he is now may have been the results I could have achieved just with repositioning. Maybe I would have gotten his head round again, but this would be how his ears remained. He is getting measured for a second band as he only has about 3 weeks left till he outgrows his current one and with his assymetry still there both CT and I believe it could only help to try to keep him in it longer.

I think early intervention is the way to go, but I may be biased because it is the choice I made and would like to believe I am doing the right thing for both of my babies. I have seen the proof though in my little mans head. Yes, maybe he is at greater risk for recurrence when all is said and done. But so many parents, no matter how old their kids are when done with banding, still worry about recurrence. We are all just much more vigilent about doing everything we can to prevent that from happening because we have gone that road before.

Good luck to you in whatever you choose is best for you and your baby.

Jen McMillin

New here...looking for advice

Hi Everyone,

I'm new to the group, and from what I've read this seems like a very well-informed and supportive group. I'm hoping you can give me some good advice. I'm sure my situation is not uncommon... I'm just not sure how to go forward, or how much to push this. Here's the story, sorry it's so long.

My son Zach is currently 4 mo, with tort which was not severe enough to meet EI standards for PT treatment. His ROM is now almost full, and his tilt is slight. He prefers to look left, and because of that he has some flattening on the left side. His flat area is way on the side, right behind his ear.

I'm concerned about his head shape (my dh and mom think I'm worried about nothing), so I took him to CT for an eval. Here are his measurements from them.

CVA 8mm

CI 83%

mid face 3mm

skull base 6mm

The technician at CT said that although Zach's CVA puts him in the mild category, he (the tech) would consider him moderate because of the facial asymmetry. He recommended banding, but seemed supportive when I said we might try repo for another month and see where we're at then. I see the ear asymmetry, but I have trouble seeing it in the eyes or cheeks (which the tech said he noticed right away).

We took this to our pedi, and he said

1- He doesn't see any facial asymmetry, only a little flattening on one side, which he thinks will round out on its own by the time Zach is 2 or 3, although he did acknowledge that the tort makes it more challenging.

2- He doesn't really trust CT because of an experience with another patient. Apparently the baby's father said the technician at CT told him that because insurance often doesn't cover the bands, that they could fudge the numbers to make it more likely to be approved. NOTE: I have no idea if CT actually said that or not, but the report from the dad has influenced our dr's opinion of them.

3- When I suggested to him that we try repo for a month and go back for another eval, he didn't say not to, but wasn't enthusiastic.

My dh thinks we should just go with what the pedi says, and is skeptical of CT, since they are trying to sell bands. I understand his pov, but I'm not convinced it will just get better.

I am trying to decide if I should schedule an eval at Children's in Chicago (about 1.25 hour drive, not too bad). I know they have a STARscanner, and I'm thinking a scan report may be more help with the pedi and dh, as well as just getting another opinion on whether we should band. Any thoughts on this? Does anyone have experience with them, did you need a referral to get in, or could you just make an appt because you were concerned? Maybe I should try to get my husband to come along?

I'm just trying to figure out the best thing to do for Zach. I don't want to be overly critical of his head, but I worry that if we don't pursue it, I'll regret it. Baldness runs quite strong on my side (all male relatives are bald, my brother started losing his hair at 20), and I also worry that facial assymmetry may be more visible when the baby fat padding is gone. I know all heads are different, but what do you think? Would (or did) you band if your baby had these numbers? Any advice for how to get our dr (and my family) on board?

Thanks,

-Jen

[Guest guest]

Unlike Amy (who was at the same CT office as me), CT's measurements were not even close to the ones that we got through the scan (86 percent versus 92 percent) or through other hand measurements (91 percent). By the way, my cranial doctor also said that she didn't trust CT as well. She said that she didn't always agree with their recommendations. I'm not sure what experiences she'd had to lead her to that conclusion.

I would suggest that since you don't know what you want to do, you might want to go for the starscan and second opinion. As long as the baby holds still, a scan is much more accurate because there is less room for human error to influence the results.

You do have time to reposition if that is what you want and if the numbers truly are mild and you are vigilent about it, you might be able to avoid the band. But don't wait too long - you don't want to miss your window for best correction.

, mom to , 2.5 years

STARband grad May 2009

Chiro and CST

land

From: Amy McGinnis <mcg_woo@...>Plagiocephaly Sent: Sun, July 25, 2010 8:07:29 PMSubject: Re: New here...looking for advice

Hello Jen, Welcome to the group. Since your son is only 4 months, that gives you some time to make up your mind about what to do. You could always try the repositioning and band at 6 months, if you think your son really needs it. Yes, it does feel comforting when someone other than the band provider says your son needs a band. My daughter's ped also did not like Cranial Tech(VA) because she said they were too pushy. Although I did not seek band therapy from CT for my daughter, I will say their measurements were in fact, right in line with measurements from the neurosurgeon and band provider that I chose. As far as the CT tech noticing the asymmetry--they deal with this everyday, so it's no surprise that they can spot things others can't. However, if you as Zach's parent can't see the asymmetry, I'd say it has to be mild. Although, I had not noticed my daughter's facial asymmetry, I easily saw it in the CT photos. I was more

focused on her misspahen head, which was very obvious.My daughter's plagio was classified as severe and I think the decision of whether to band is more difficult in the milder cases. This decision is even more difficult when you know there's just a small window of opportunity to band. When I met with the orthotist who banded my daughter, I recall him saying that he'd banded babies more severe than mine, but he'd also banded babies much less severe. If your ped doesn't trust CT, then you could always have a consult w/ another band provider to see if their recommendations are in line with CT and discuss the results with the ped. While not enthusiastic, it sounds at least like your ped will work with you if you push the issue.Hope this helps. Good luck and keep us posted.-Amy

From: jenchiblu <jen330gmail (DOT) com>PlagiocephalySent: Sat, July 24, 2010 11:07:55 AMSubject: New here...looking for advice

Hi Everyone,I'm new to the group, and from what I've read this seems like a very well-informed and supportive group. I'm hoping you can give me some good advice. I'm sure my situation is not uncommon... I'm just not sure how to go forward, or how much to push this. Here's the story, sorry it's so long.My son Zach is currently 4 mo, with tort which was not severe enough to meet EI standards for PT treatment. His ROM is now almost full, and his tilt is slight. He prefers to look left, and because of that he has some flattening on the left side. His flat area is way on the side, right behind his ear. I'm concerned about his head shape (my dh and mom think I'm worried about nothing), so I took him to CT for an eval. Here are his measurements from them. CVA 8mmCI 83%mid face 3mmskull base 6mmThe technician at CT said that although Zach's CVA puts him in the mild category, he (the tech) would consider him

moderate because of the facial asymmetry. He recommended banding, but seemed supportive when I said we might try repo for another month and see where we're at then. I see the ear asymmetry, but I have trouble seeing it in the eyes or cheeks (which the tech said he noticed right away).We took this to our pedi, and he said1- He doesn't see any facial asymmetry, only a little flattening on one side, which he thinks will round out on its own by the time Zach is 2 or 3, although he did acknowledge that the tort makes it more challenging.2- He doesn't really trust CT because of an experience with another patient. Apparently the baby's father said the technician at CT told him that because insurance often doesn't cover the bands, that they could fudge the numbers to make it more likely to be approved. NOTE: I have no idea if CT actually said that or not, but the report from the dad has influenced our dr's opinion of them.3- When I suggested

to him that we try repo for a month and go back for another eval, he didn't say not to, but wasn't enthusiastic.My dh thinks we should just go with what the pedi says, and is skeptical of CT, since they are trying to sell bands. I understand his pov, but I'm not convinced it will just get better.I am trying to decide if I should schedule an eval at Children's in Chicago (about 1.25 hour drive, not too bad). I know they have a STARscanner, and I'm thinking a scan report may be more help with the pedi and dh, as well as just getting another opinion on whether we should band. Any thoughts on this? Does anyone have experience with them, did you need a referral to get in, or could you just make an appt because you were concerned? Maybe I should try to get my husband to come along?I'm just trying to figure out the best thing to do for Zach. I don't want to be overly critical of his head, but I worry that if we don't pursue it, I'll

regret it. Baldness runs quite strong on my side (all male relatives are bald, my brother started losing his hair at 20), and I also worry that facial assymmetry may be more visible when the baby fat padding is gone. I know all heads are different, but what do you think? Would (or did) you band if your baby had these numbers? Any advice for how to get our dr (and my family) on board?Thanks,-Jen

[Guest guest]

Thanks to everyone for your replies. I posted some pictures of Zach in the " Our

Plagio Babies V-Z " folder, under Zach P. Now that I've flipped a couple

pictures to mirror image, I can really see the facial asymmetry. His head shape

is mild, and the flat part is right behind his left ear (he liked to lay with

his left ear basically on the mattress), so I think that makes it hard to see on

the standard shots.

I talked with my mother, who said that although she originally didn't think

there was anything wrong, since I pointed it out she can see it (his head shape,

she doesn't see any asymmetry except in his ears). She shares the opinion of

many here, that it's better to do it and never know if it was necessary than to

not do it and regret it.

I'm still not sure about getting the STARscan at Childrens Chicago. I'm a

little confused about how good STARscan is for measuring facial and ear

asymmetry as opposed to CVA, any thoughts? Also, I found an old message on the

board about a scan there costing $300 out of pocket. Does anyone know if that's

still the case?

As for our pediatrician, I am guessing that if I push it, he will agree to write

a prescription... but I'm not so sure about the letter of necessity, since he

doesn't think it IS necessary.

Anyway, I am still figuring out how to proceed, but I wanted to say thanks for

the support.

-Jen

>

> Hi Everyone,

>

> I'm new to the group, and from what I've read this seems like a very

well-informed and supportive group. I'm hoping you can give me some good

advice. I'm sure my situation is not uncommon... I'm just not sure how to go

forward, or how much to push this. Here's the story, sorry it's so long.

>

> My son Zach is currently 4 mo, with tort which was not severe enough to meet

EI standards for PT treatment. His ROM is now almost full, and his tilt is

slight. He prefers to look left, and because of that he has some flattening on

the left side. His flat area is way on the side, right behind his ear.

>

> I'm concerned about his head shape (my dh and mom think I'm worried about

nothing), so I took him to CT for an eval. Here are his measurements from them.

>

> CVA 8mm

> CI 83%

> mid face 3mm

> skull base 6mm

>

> The technician at CT said that although Zach's CVA puts him in the mild

category, he (the tech) would consider him moderate because of the facial

asymmetry. He recommended banding, but seemed supportive when I said we might

try repo for another month and see where we're at then. I see the ear

asymmetry, but I have trouble seeing it in the eyes or cheeks (which the tech

said he noticed right away).

>

> We took this to our pedi, and he said

> 1- He doesn't see any facial asymmetry, only a little flattening on one side,

which he thinks will round out on its own by the time Zach is 2 or 3, although

he did acknowledge that the tort makes it more challenging.

> 2- He doesn't really trust CT because of an experience with another patient.

Apparently the baby's father said the technician at CT told him that because

insurance often doesn't cover the bands, that they could fudge the numbers to

make it more likely to be approved. NOTE: I have no idea if CT actually said

that or not, but the report from the dad has influenced our dr's opinion of

them.

> 3- When I suggested to him that we try repo for a month and go back for

another eval, he didn't say not to, but wasn't enthusiastic.

>

> My dh thinks we should just go with what the pedi says, and is skeptical of

CT, since they are trying to sell bands. I understand his pov, but I'm not

convinced it will just get better.

>

> I am trying to decide if I should schedule an eval at Children's in Chicago

(about 1.25 hour drive, not too bad). I know they have a STARscanner, and I'm

thinking a scan report may be more help with the pedi and dh, as well as just

getting another opinion on whether we should band. Any thoughts on this? Does

anyone have experience with them, did you need a referral to get in, or could

you just make an appt because you were concerned? Maybe I should try to get my

husband to come along?

>

> I'm just trying to figure out the best thing to do for Zach. I don't want to

be overly critical of his head, but I worry that if we don't pursue it, I'll

regret it. Baldness runs quite strong on my side (all male relatives are bald,

my brother started losing his hair at 20), and I also worry that facial

assymmetry may be more visible when the baby fat padding is gone. I know all

heads are different, but what do you think? Would (or did) you band if your

baby had these numbers? Any advice for how to get our dr (and my family) on

board?

>

> Thanks,

> -Jen

>

[Guest guest]

I think everyone's given you great advice. I just wanted to say that I hope you

get the tort treated even though it's mild and doesn't qualify for early

intervention services. Not qualifying for EI doesn't mean you can't get a PT on

your own. The amount of success you see from repo will depend a lot on whether

the tort is resolved or not. At the very least, do the stretches 5-6 times a day

at home if you don't do PT. Did Cranial Tech show you how to do the stretches?

There are documents online that show the stretches, but some of them aren't

showing the safest method (never push the jaw area when stretching).

Regarding the $300 charge, just call and ask. I think a second opinion never

hurts. I don't share the sentiment about not trusting Cranial Tech though. I

called and asked them before my son's appointment if I could bring our insurance

company's measurement requirements to check if he was going to qualify or not.

They said of course they would tell me which measurements were which, but they

also made a point to say something like, " We will only look at them after the

measurements, and if his aren't severe enough, we can't do anything about that. "

I took that to mean, " We won't fudge the numbers for your insurance if that's

what you're getting at. " Of course, that wasn't what I was getting at, but it

was good to know they wouldn't do that. This was the Connecticut CT, FYI.

> >

> > Hi Everyone,

> >

> > I'm new to the group, and from what I've read this seems like a very

well-informed and supportive group. I'm hoping you can give me some good

advice. I'm sure my situation is not uncommon... I'm just not sure how to go

forward, or how much to push this. Here's the story, sorry it's so long.

> >

> > My son Zach is currently 4 mo, with tort which was not severe enough to meet

EI standards for PT treatment. His ROM is now almost full, and his tilt is

slight. He prefers to look left, and because of that he has some flattening on

the left side. His flat area is way on the side, right behind his ear.

> >

> > I'm concerned about his head shape (my dh and mom think I'm worried about

nothing), so I took him to CT for an eval. Here are his measurements from them.

> >

> > CVA 8mm

> > CI 83%

> > mid face 3mm

> > skull base 6mm

> >

> > The technician at CT said that although Zach's CVA puts him in the mild

category, he (the tech) would consider him moderate because of the facial

asymmetry. He recommended banding, but seemed supportive when I said we might

try repo for another month and see where we're at then. I see the ear

asymmetry, but I have trouble seeing it in the eyes or cheeks (which the tech

said he noticed right away).

> >

> > We took this to our pedi, and he said

> > 1- He doesn't see any facial asymmetry, only a little flattening on one

side, which he thinks will round out on its own by the time Zach is 2 or 3,

although he did acknowledge that the tort makes it more challenging.

> > 2- He doesn't really trust CT because of an experience with another patient.

Apparently the baby's father said the technician at CT told him that because

insurance often doesn't cover the bands, that they could fudge the numbers to

make it more likely to be approved. NOTE: I have no idea if CT actually said

that or not, but the report from the dad has influenced our dr's opinion of

them.

> > 3- When I suggested to him that we try repo for a month and go back for

another eval, he didn't say not to, but wasn't enthusiastic.

> >

> > My dh thinks we should just go with what the pedi says, and is skeptical of

CT, since they are trying to sell bands. I understand his pov, but I'm not

convinced it will just get better.

> >

> > I am trying to decide if I should schedule an eval at Children's in Chicago

(about 1.25 hour drive, not too bad). I know they have a STARscanner, and I'm

thinking a scan report may be more help with the pedi and dh, as well as just

getting another opinion on whether we should band. Any thoughts on this? Does

anyone have experience with them, did you need a referral to get in, or could

you just make an appt because you were concerned? Maybe I should try to get my

husband to come along?

> >

> > I'm just trying to figure out the best thing to do for Zach. I don't want

to be overly critical of his head, but I worry that if we don't pursue it, I'll

regret it. Baldness runs quite strong on my side (all male relatives are bald,

my brother started losing his hair at 20), and I also worry that facial

assymmetry may be more visible when the baby fat padding is gone. I know all

heads are different, but what do you think? Would (or did) you band if your

baby had these numbers? Any advice for how to get our dr (and my family) on

board?

> >

> > Thanks,

> > -Jen

> >

>

[Guest guest]

For the starscan, the ortho will put some stickers with dots on the baby's cheeks (this is new and I only know about it because we went for a follow up scan this past May). The ortho tells the computer where the ears and eyes are when she prepares the scan for having the results printed out. The computer measures how off the ears are and gives and ear misalignment number (it's called "ear offset") in mm. The face is measured as a symmetry percentage rather than a particular mm. I'm am guessing that this is the same way that CT measures skull base asymmetry except that it isn't computerized, but I could be wrong. I'm less familiar with their measuring system. The STARscan does not do any measuring of the jaw, but I'm not sure that anyone does.

That's about the extent of what I know about it. For more, check out this link. There is also a video there that shows an example of what it is like. This is the video that I showed my daughter before her follow up appointment to help her understand what would happen (she was 2.5 years at the time).

There is also a link to an article describing a study using the starscanner. My ortho is actually the first author on the paper and if you have the time, you can read the descriptions of what all of the different measurement numbers mean. Unfortunately, the study doesn't seem to mention the ear offset number that I saw on my scan reports nor does it emphasize the facial symmetry, but it will tell anyone who wants to know what most of the other numbers mean.

http://www.starcranialcenter.com/v2/site.html

From: stephaniebilliel <SBilliel@...>Plagiocephaly Sent: Thu, July 29, 2010 12:30:03 PMSubject: Re: New here...looking for advice

I think everyone's given you great advice. I just wanted to say that I hope you get the tort treated even though it's mild and doesn't qualify for early intervention services. Not qualifying for EI doesn't mean you can't get a PT on your own. The amount of success you see from repo will depend a lot on whether the tort is resolved or not. At the very least, do the stretches 5-6 times a day at home if you don't do PT. Did Cranial Tech show you how to do the stretches? There are documents online that show the stretches, but some of them aren't showing the safest method (never push the jaw area when stretching). Regarding the $300 charge, just call and ask. I think a second opinion never hurts. I don't share the sentiment about not trusting Cranial Tech though. I called and asked them before my son's appointment if I could bring our insurance company's measurement requirements to check if he was going to qualify or not. They said of course they

would tell me which measurements were which, but they also made a point to say something like, "We will only look at them after the measurements, and if his aren't severe enough, we can't do anything about that." I took that to mean, "We won't fudge the numbers for your insurance if that's what you're getting at." Of course, that wasn't what I was getting at, but it was good to know they wouldn't do that. This was the Connecticut CT, FYI. > >> > Hi Everyone,> > > > I'm new to the group, and from what I've read this seems like a very well-informed and supportive group. I'm hoping you can give me some good advice. I'm sure my situation is not uncommon... I'm just not sure how to go forward, or how much to push this. Here's the story, sorry it's so long.> > > > My son Zach is currently 4 mo, with tort which was not severe enough to meet EI standards for PT treatment. His ROM is now almost full, and his

tilt is slight. He prefers to look left, and because of that he has some flattening on the left side. His flat area is way on the side, right behind his ear. > > > > I'm concerned about his head shape (my dh and mom think I'm worried about nothing), so I took him to CT for an eval. Here are his measurements from them. > > > > CVA 8mm> > CI 83%> > mid face 3mm> > skull base 6mm> > > > The technician at CT said that although Zach's CVA puts him in the mild category, he (the tech) would consider him moderate because of the facial asymmetry. He recommended banding, but seemed supportive when I said we might try repo for another month and see where we're at then. I see the ear asymmetry, but I have trouble seeing it in the eyes or cheeks (which the tech said he noticed right away).> > > > We took this to our pedi, and he said> > 1- He

doesn't see any facial asymmetry, only a little flattening on one side, which he thinks will round out on its own by the time Zach is 2 or 3, although he did acknowledge that the tort makes it more challenging.> > 2- He doesn't really trust CT because of an experience with another patient. Apparently the baby's father said the technician at CT told him that because insurance often doesn't cover the bands, that they could fudge the numbers to make it more likely to be approved. NOTE: I have no idea if CT actually said that or not, but the report from the dad has influenced our dr's opinion of them.> > 3- When I suggested to him that we try repo for a month and go back for another eval, he didn't say not to, but wasn't enthusiastic.> > > > My dh thinks we should just go with what the pedi says, and is skeptical of CT, since they are trying to sell bands. I understand his pov, but I'm not convinced it will just get

better.> > > > I am trying to decide if I should schedule an eval at Children's in Chicago (about 1.25 hour drive, not too bad). I know they have a STARscanner, and I'm thinking a scan report may be more help with the pedi and dh, as well as just getting another opinion on whether we should band. Any thoughts on this? Does anyone have experience with them, did you need a referral to get in, or could you just make an appt because you were concerned? Maybe I should try to get my husband to come along?> > > > I'm just trying to figure out the best thing to do for Zach. I don't want to be overly critical of his head, but I worry that if we don't pursue it, I'll regret it. Baldness runs quite strong on my side (all male relatives are bald, my brother started losing his hair at 20), and I also worry that facial assymmetry may be more visible when the baby fat padding is gone. I know all heads are different, but what do

you think? Would (or did) you band if your baby had these numbers? Any advice for how to get our dr (and my family) on board?> > > > Thanks,> > -Jen> >>