Re: OMG: Very Discouraging News for Us

[Guest guest]

Hi ,

I'm not sure the band fits properly. If it does then why is the

prominent side growing? This should be held by the band. Over the

course of treatment there might be slight growth in the prominent area

- but very slight. In 7 weeks at this age you should definitely see

improvement. Has his head circumference changed? I would try to get a

second opinion from another ortho. Did you get a starscan for the

follow up visits? Can you see change on the scan (any growth, even it

it isn't where you want it)? Maybe you can contact orthomerica

corporate and see if they can be of any help in figuring out what is

going on.

How much experience does your ortho have? At this point I would lean

toward banding elsewhere vs. wasting more time. It is also true that

there might be some improvement that doesn't show up in the

measurements, but at this age the measurements should be improving too.

-christine

sydney 2 yrs starband grad

>

> So, had been in his STARband for seven weeks now and we have

> followed the rules to the letter. He has missed several days due to a

> really bad sore on his head and two fevers, but other than that, we

> have been extremely compliant. We went to the orthotist today and not

> only have his measurements not changed from the last visit a couple of

> weeks ago, but they show that both the flat and prominant spots have

> grown equally. I swear it looks like there has been progress, but the

> numbers two visits in a row don't support that. If you measure left

> front to right back and vice versa, and subtract to find the

> difference, it still shows 1cm difference. 10 whole stinkin mm!!!! I

> can't believe it. The child is nine months old. What are we going to

> do? The orthotist doesn't think there's anything wrong with the helmet

> or the fit, but that can't be. I don't know what to do, but has

> a well visit on Monday am and any advice or suggestions anyone can

> offer would be greatly appreciated.

> Thank you,

>

> * 9mo * tort resolved * lft plagio * STARband 7wks

> Conner * 2yrs

> Greenville, NC USA

>

[Guest guest]

Hi -

I remember that we talked about this similar issue after your last

appointment, that both the flat and prominent areas were growing at

the same rate (I think you said a half cm for each). I was concerned

then, but thought it had more to do with the overall circumference

of the head growing and maybe making the numbers misleading. I know

that measurements aren't always accurate and that we shouldn't put

the entire success or failure of a helmet strictly on numbers, but

I'm still not sure about the flat and prominent sides growing

equally. That just doesn't seem right, but I can't explain why

because I'm just not that smart! I think the flat areas should be

growing at an exponentially higher rate than the prominent areas

(which still should grow slightly as the head circumference gets

bigger). For instance (I can't remember if I shared this with you

the first time), my son's beginning measurements were:

Prominent (rt front to back lt): 165mm

Flat (lt front to back rt): 150mm

After 14 weeks in the band his measurements were:

Prominent: 170mm

Flat: 181mm

So his prominent areas did grow, but only by 5mm compared to the

flat areas' 31mm. See what I mean? I know that hasn't been in

it 14 weeks yet, but he's much younger than my son was when he

started and should be seeing somewhat similar results at his

age/growth rate. (and again, even our numbers are misleading because

now, on paper, it would seem that the flat area is larger than the

prominent, but that is definitely not the case, so you see why it's

so hard to wrap your brain around measurements).

What do you SEE with your eyes? Have you been taking progress

photos? If not, I would suggest starting now, take them each week

from the same angles to compare. Also, there is a StarBand ortho in

Charlotte, Level 4 something or other. Do you think it might be

worth making a trip there to get a second opinion on the fit of the

band? I know it would be a trek for you, but it might be worth it

for some peace of mind. Or at least, call them and ask about the

flat and prominent areas growing equally and see what their reaction

is to that (and ask them if they measure progress with a pencil

poking into the air holes like your ortho does!), and then go from

there. It surely couldn't hurt to ask some questions.

I really hope it works out for you. Good luck and please keep us

posted. (And let me know if/when you'll be in Raleigh!).

Jake-20m (tort resolved/rt plagio/DOCBand 15 weeks)

Jordan-4

>

> So, had been in his STARband for seven weeks now and we

have

> followed the rules to the letter. He has missed several days due

to a

> really bad sore on his head and two fevers, but other than that,

we

> have been extremely compliant. We went to the orthotist today and

not

> only have his measurements not changed from the last visit a

couple of

> weeks ago, but they show that both the flat and prominant spots

have

> grown equally. I swear it looks like there has been progress, but

the

> numbers two visits in a row don't support that. If you measure

left

> front to right back and vice versa, and subtract to find the

> difference, it still shows 1cm difference. 10 whole stinkin

mm!!!! I

> can't believe it. The child is nine months old. What are we

going to

> do? The orthotist doesn't think there's anything wrong with the

helmet

> or the fit, but that can't be. I don't know what to do, but

has

> a well visit on Monday am and any advice or suggestions anyone can

> offer would be greatly appreciated.

> Thank you,

>

> * 9mo * tort resolved * lft plagio * STARband 7wks

> Conner * 2yrs

> Greenville, NC USA

>

[Guest guest]

Hey ! I'm pretty sure that the band doesn't fit

properly. When I asked the ortho, he said that bc 's head was

growing all the measurements had changed, but no progress yet.

has a well visit on Monday and I'm going to talk to his ped

about finding a new place. I hope that's possible. We have Medicaid

and they covered 100% so far, but I don't know about getting a new

one bc we don't trust our " expert " . IDK! From everything I've heard

here, there should be some measurable progress and it doesn't sound

like the ortho knows what he's talking about. Maybe he does really

well with back braces or knee braces, but we're going for a cranial

band and he doesn't see all that informed about those. We do not

have a scanner. That would be great. I'm considering finding a

place where he could get a DOC band, but he's already used to a

STARband, so I don't know. Anybody have any thoughts on that?

Thanks a bunch!

*8mo*tort resolved*lft plagio 10mm*STARband 7wks-no measurable

progress

Conner *2yrs

Greenville, NC USA

> >

> > So, had been in his STARband for seven weeks now and we

have

> > followed the rules to the letter. He has missed several days due

to a

> > really bad sore on his head and two fevers, but other than that,

we

> > have been extremely compliant. We went to the orthotist today

and not

> > only have his measurements not changed from the last visit a

couple of

> > weeks ago, but they show that both the flat and prominant spots

have

> > grown equally. I swear it looks like there has been progress,

but the

> > numbers two visits in a row don't support that. If you measure

left

> > front to right back and vice versa, and subtract to find the

> > difference, it still shows 1cm difference. 10 whole stinkin

mm!!!! I

> > can't believe it. The child is nine months old. What are we

going to

> > do? The orthotist doesn't think there's anything wrong with the

helmet

> > or the fit, but that can't be. I don't know what to do, but

has

> > a well visit on Monday am and any advice or suggestions anyone

can

> > offer would be greatly appreciated.

> > Thank you,

> >

> > * 9mo * tort resolved * lft plagio * STARband 7wks

> > Conner * 2yrs

> > Greenville, NC USA

> >

>

[Guest guest]

! Oh yes! I may try calling. Do you know what that center in

Charlotte is called? Maybe I could Google it. I am very suspect of

the helmets fitting/not fitting. The ortho says it fits, but I don't

agree (in my humble untrained opinion). What a mess! I'll

definitely let you know when we're going through Raleigh. It would

be fun to let the babies see another baby in a helmet to see if they

even notice it. has never see another person wearing a

helmet! Do you think I should think about switching to a DOCband

since 's getting older. It's funny to think about a nine mo

old being 'older' heather

> >

> > So, had been in his STARband for seven weeks now and we

> have

> > followed the rules to the letter. He has missed several days due

> to a

> > really bad sore on his head and two fevers, but other than that,

> we

> > have been extremely compliant. We went to the orthotist today

and

> not

> > only have his measurements not changed from the last visit a

> couple of

> > weeks ago, but they show that both the flat and prominant spots

> have

> > grown equally. I swear it looks like there has been progress,

but

> the

> > numbers two visits in a row don't support that. If you measure

> left

> > front to right back and vice versa, and subtract to find the

> > difference, it still shows 1cm difference. 10 whole stinkin

> mm!!!! I

> > can't believe it. The child is nine months old. What are we

> going to

> > do? The orthotist doesn't think there's anything wrong with the

> helmet

> > or the fit, but that can't be. I don't know what to do, but

> has

> > a well visit on Monday am and any advice or suggestions anyone

can

> > offer would be greatly appreciated.

> > Thank you,

> >

> > * 9mo * tort resolved * lft plagio * STARband 7wks

> > Conner * 2yrs

> > Greenville, NC USA

> >

>

[Guest guest]

I don't know the exact name of the place in Charlotte, I've only

heard of it referred to as Level 4. Maybe it's through the

children's hospital there?

I think I would at least start there and ask them about it since

they do know about StarBands and then if you don't feel comfortable

with their explanation, you can definitely look into CT, especially

since there's one in Charlotte too. (If you're going to make a trip

there, you might as well cover your bases!). I do know of a mom

personally who first banded her son with a StarBand at 9 months old,

and he graduated in 10 weeks, so it's still possible that a StarBand

will work for you, you just need to get one that you know fits well!

Jake-20m (tort resolved/rt plagio/DOCBand 15 weeks)

Jordan-4

> > >

> > > So, had been in his STARband for seven weeks now and we

> > have

> > > followed the rules to the letter. He has missed several days

due

> > to a

> > > really bad sore on his head and two fevers, but other than

that,

> > we

> > > have been extremely compliant. We went to the orthotist today

> and

> > not

> > > only have his measurements not changed from the last visit a

> > couple of

> > > weeks ago, but they show that both the flat and prominant

spots

> > have

> > > grown equally. I swear it looks like there has been progress,

> but

> > the

> > > numbers two visits in a row don't support that. If you

measure

> > left

> > > front to right back and vice versa, and subtract to find the

> > > difference, it still shows 1cm difference. 10 whole stinkin

> > mm!!!! I

> > > can't believe it. The child is nine months old. What are we

> > going to

> > > do? The orthotist doesn't think there's anything wrong with

the

> > helmet

> > > or the fit, but that can't be. I don't know what to do, but

> > has

> > > a well visit on Monday am and any advice or suggestions anyone

> can

> > > offer would be greatly appreciated.

> > > Thank you,

> > >

> > > * 9mo * tort resolved * lft plagio * STARband 7wks

> > > Conner * 2yrs

> > > Greenville, NC USA

> > >

> >

>

[Guest guest]

The place in Charlotte is Level 4 Pediatrics. I checked into them before we went with somewhere closer. I've talked to their ortho and she was VERY nice and informative. I would give them a call.

Their website is: http://www.levelfour.us.com/index.aspx Austin-6 mos(tort/plagio)Blake-4

Re: OMG: Very Discouraging News for Us

I don't know the exact name of the place in Charlotte, I've only heard of it referred to as Level 4. Maybe it's through the children's hospital there? I think I would at least start there and ask them about it since they do know about StarBands and then if you don't feel comfortable with their explanation, you can definitely look into CT, especially since there's one in Charlotte too. (If you're going to make a trip there, you might as well cover your bases!). I do know of a mom personally who first banded her son with a StarBand at 9 months old, and he graduated in 10 weeks, so it's still possible that a StarBand will work for you, you just need to get one that you know fits well! Jake-20m (tort resolved/rt plagio/DOCBand 15 weeks)Jordan-4> > >> > > So, had been in his STARband for seven weeks now and we > > have

> > > followed the rules to the letter. He has missed several days due > > to a > > > really bad sore on his head and two fevers, but other than that, > > we > > > have been extremely compliant. We went to the orthotist today > and > > not > > > only have his measurements not changed from the last visit a > > couple of > > > weeks ago, but they show that both the flat and prominant spots > > have > > > grown equally. I swear it looks like there has been progress, > but > > the > > > numbers two visits in a row don't support that. If you measure > > left > > > front to right back and vice versa, and subtract to find the > > > difference, it still shows 1cm difference. 10 whole stinkin > > mm!!!! I > > > can't believe

it. The child is nine months old. What are we > > going to > > > do? The orthotist doesn't think there's anything wrong with the > > helmet > > > or the fit, but that can't be. I don't know what to do, but > > has > > > a well visit on Monday am and any advice or suggestions anyone > can > > > offer would be greatly appreciated.> > > Thank you, > > > > > > * 9mo * tort resolved * lft plagio * STARband 7wks> > > Conner * 2yrs> > > Greenville, NC USA> > >> >>

[Guest guest]

, I'm totally forgetting that you could also go to the Brace

Shop at UNC Hospitals in Chapel Hill if that's closer (or again,

just call them). They do the STARBand there as well, and in fact,

the mom I mentioned whose son started treatment at 9 months went

there and she was very happy with them. I went there for an eval

because our surgeon is at UNC, but decided to go to CT in Charlotte

because of their experience with old babies. The number for the

Brace Shop in Chapel Hill is 919-966-4630 and the orthos are Jill

and . I liked the orthos when I met them and felt good about

them because of the first-hand referal I had from the other mom, but

they only saw a handful of babies over a year old each year, where

as CT sees 40-60.

So now you have two STARBand orthos you can call to ask some

questions. Let us know what they say!

Jake-20m (tort resolved/rt plagio/DOCBand 15 weeks)

Jordan-4

> > > >

> > > > So, had been in his STARband for seven weeks now and

we

> > > have

> > > > followed the rules to the letter. He has missed several

days

> due

> > > to a

> > > > really bad sore on his head and two fevers, but other than

> that,

> > > we

> > > > have been extremely compliant. We went to the orthotist

today

> > and

> > > not

> > > > only have his measurements not changed from the last visit a

> > > couple of

> > > > weeks ago, but they show that both the flat and prominant

> spots

> > > have

> > > > grown equally. I swear it looks like there has been

progress,

> > but

> > > the

> > > > numbers two visits in a row don't support that. If you

> measure

> > > left

> > > > front to right back and vice versa, and subtract to find the

> > > > difference, it still shows 1cm difference. 10 whole stinkin

> > > mm!!!! I

> > > > can't believe it. The child is nine months old. What are

we

> > > going to

> > > > do? The orthotist doesn't think there's anything wrong with

> the

> > > helmet

> > > > or the fit, but that can't be. I don't know what to do, but

> > > has

> > > > a well visit on Monday am and any advice or suggestions

anyone

> > can

> > > > offer would be greatly appreciated.

> > > > Thank you,

> > > >

> > > > * 9mo * tort resolved * lft plagio * STARband 7wks

> > > > Conner * 2yrs

> > > > Greenville, NC USA

> > > >

> > >

> >

>

[Guest guest]

I don't think it will be a problem to switch to a docband just

because he's in a starband now. If the fit is good babies don't

notice it too much, and also he'll be used to a band in general, so

that may help with the sweating. I know CT in NC has a good

reputation from many people, including (one of the other mods

in the group). I'm not sure how much of a drive it is for you, but

if you can do it you should be pretty happy with them. I know there

are other providers in NC too, but I don't know much about one vs

the other. I do think the ortho just doesn't sounds knowledgeable

enough. It should be a red flag for him/her if there is growth but

it isn't being directed to the flat area. My daughter had growth at

each visit and our ortho usually scanned her so we could see exactly

where the new growth was. There was a small margin of error from

one scan to the next, but we could always tell the bulk of the

growth was going to the right place (the back in her case since she

had brachy).

Let us know what your ped says.

-christine

sydney 2 yrs starband grad

> > >

> > > So, had been in his STARband for seven weeks now and we

> have

> > > followed the rules to the letter. He has missed several days

due

> to a

> > > really bad sore on his head and two fevers, but other than

that,

> we

> > > have been extremely compliant. We went to the orthotist today

> and not

> > > only have his measurements not changed from the last visit a

> couple of

> > > weeks ago, but they show that both the flat and prominant

spots

> have

> > > grown equally. I swear it looks like there has been progress,

> but the

> > > numbers two visits in a row don't support that. If you

measure

> left

> > > front to right back and vice versa, and subtract to find the

> > > difference, it still shows 1cm difference. 10 whole stinkin

> mm!!!! I

> > > can't believe it. The child is nine months old. What are we

> going to

> > > do? The orthotist doesn't think there's anything wrong with

the

> helmet

> > > or the fit, but that can't be. I don't know what to do, but

> has

> > > a well visit on Monday am and any advice or suggestions anyone

> can

> > > offer would be greatly appreciated.

> > > Thank you,

> > >

> > > * 9mo * tort resolved * lft plagio * STARband 7wks

> > > Conner * 2yrs

> > > Greenville, NC USA

> > >

> >

>

[Guest guest]

Hey everybody! I called The Brace Shop this afternoon and spoke with

Jill (thank you ). She was really friendly and acted genuinely

interested in 's situation. She asked a lot of questions and

explained their procedures. They don't have a scanner either,

but...oh oh! I almost forgot...she had heard of the pencil trick!!!

I almost died! She said they don't do it but that it was an old

orthotist trick of the trade! She said it didn't sound as crazy to

her as it did to me, but that she could understand why it baffled me

so much. Couldn't believe it! So, we have an appt for next

week! They got me in so fast. She said they see 30 to 40 babies at

any given time! That's more than 3X Greenville! So, I'm taking

, his helmet, and (gulp)his records from PCMH and headed for

Chapel Hill! This could be interesting! I really hope they tell me

that everythings fine, but we'll see. I checked and it was 21 days

from casting to fitting! 21 days! So, I'm going to contact

Orthomerica on Monday to request a new helmet! Hmmmmmm! The plot

thickens!

> > > > >

> > > > > So, had been in his STARband for seven weeks now and

> we

> > > > have

> > > > > followed the rules to the letter. He has missed several

> days

> > due

> > > > to a

> > > > > really bad sore on his head and two fevers, but other than

> > that,

> > > > we

> > > > > have been extremely compliant. We went to the orthotist

> today

> > > and

> > > > not

> > > > > only have his measurements not changed from the last visit

a

> > > > couple of

> > > > > weeks ago, but they show that both the flat and prominant

> > spots

> > > > have

> > > > > grown equally. I swear it looks like there has been

> progress,

> > > but

> > > > the

> > > > > numbers two visits in a row don't support that. If you

> > measure

> > > > left

> > > > > front to right back and vice versa, and subtract to find

the

> > > > > difference, it still shows 1cm difference. 10 whole

stinkin

> > > > mm!!!! I

> > > > > can't believe it. The child is nine months old. What are

> we

> > > > going to

> > > > > do? The orthotist doesn't think there's anything wrong

with

> > the

> > > > helmet

> > > > > or the fit, but that can't be. I don't know what to do,

but

> > > > has

> > > > > a well visit on Monday am and any advice or suggestions

> anyone

> > > can

> > > > > offer would be greatly appreciated.

> > > > > Thank you,

> > > > >

> > > > > * 9mo * tort resolved * lft plagio * STARband 7wks

> > > > > Conner * 2yrs

> > > > > Greenville, NC USA

> > > > >

> > > >

> > >

> >

>