Frusterated w/ Star Band!!!

[Guest guest]

Hi Francine,

I can just imagine how frustrating this has been for you- trying to get this

darn helmet to work, and yet, convince the ortho that something is not

right!! I'm sure you would be able to tell better if this rash was from the

shifting of the helmet, or from skin irritation as the ortho claims, being

that you are with him everyday, and can see more of what's happening with

this helmet on. I agree with Debbie, I would keep the band off of , it

hasn't helped yet and its only making his skin raw. We all want this to

work, but not at the expense of our kids health and comfort. I think you

already know this, and just can't get confirmation from the ortho that your

right on target with the helmet being the problem. If you can make a trip

out to San Diego or Burbank, I would highly recommend doing that so that CT

can help you, this way, you know right off the bat that they are very

experienced and you won't have to do a search and seek for someone else

nearby, and still wonder if you'll be dealing with the same types of

problems. You can even look into angel flight, and I know Beck used them and

can help you there, where they can fly you to your son's treatment- ask Beck

about this if you feel it might help. is still at a great age for

correction, and with the DOC band, they will band up to 2- but the sooner the

better. I am so sorry to hear of all the trouble you've had to go through-

anytime you need to vent, we're all ears/eyes!!! Good luck to you in your

efforts and give a big ole kiss from us too!

' Mom

[Guest guest]

My son has been wearing the StarBand for 4 months or so, and there

has been little to no improvement. My husband and I think that the

band was made wrong, again. One would think that some significant

improvement would have been made already. The orthosist says

that 's red and irratated head is due to a skin alergy because of

the soap... I know that is NOT the case. I even said so. The helmet

constantly rotates by his eye and when roating, rubs the skin right

off of his forehead! I'm almost tempted to not have my son wear

the stupid helmet anymore. His flat spot isn't that bad but enough

to warrant him wearing it. It's just, if it's not doing anything,

why continue to give him a raw forhead? This is so frusterating!

Does anyone else know of another place in California besides Palo

Alto that helps with the helmets so I can get a second opinion? Help

is greatly needed!

Frustrated Mom

[Guest guest]

Hi,

I'm sorry to hear of the problems you having with your son's band.

Is your orthotist experienced? How many babies has he/she banded? If

your orthotist isn't experienced, he/she can do more harm than good.

You can go to Cranial Technologies and get a second opinion. You can

get an evaluation for free. I don't know how close to you these 2

places are...hopefully close enough. Good luck and please keep us

posted!

San Diego

Cranial Technologies, Inc.

8010 Frost Street, #410

San Diego, CA 92123

Phone: (858) 571-1217

Toll Free:(866) 571-1217

Fax: (858) 571-6107

Clinician: Dionne Lauritzen, OTR

Burbank/Los Angeles

Cranial Therapies, Inc.

1023 N. Hollywood Wy., #103

Burbank, CA 91505

Phone: 818-845-2082

Fax: 818-845-1634

President: Pomatto, BOC

Clinician: Bitting, BOC

> My son has been wearing the StarBand for 4 months or so, and there

> has been little to no improvement. My husband and I think that the

> band was made wrong, again. One would think that some significant

> improvement would have been made already. The orthosist says

> that 's red and irratated head is due to a skin alergy because

of

> the soap... I know that is NOT the case. I even said so. The

helmet

> constantly rotates by his eye and when roating, rubs the skin right

> off of his forehead! I'm almost tempted to not have my son

wear

> the stupid helmet anymore. His flat spot isn't that bad but enough

> to warrant him wearing it. It's just, if it's not doing anything,

> why continue to give him a raw forhead? This is so frusterating!

> Does anyone else know of another place in California besides Palo

> Alto that helps with the helmets so I can get a second opinion?

Help

> is greatly needed!

>

> Frustrated Mom

[Guest guest]

Oh I'm soooo sorry to hear of your son's problems with his STARband.

Your story sounds eerily familiar to my daugher Abby's who also wore

a STARband for about 3 mos with absolutely no improvement & ended up

causing more harm than good to her headshape.

Are you near any Cranial Tech clinics? If so, maybe you could give

them a call and ask for a consultation?

The band should not constantly rotate as you have described and

really shouldn't rub any skin off the forehead, Abby's STARband also

rubbed skin off her forehead at the end of our treatment. That

should not happen at all. Do you know if your orthotist has any

experience wiht the STARband or is one of his first patients?

How old is now & how old was he when you began treatment? Did

ever have a CT scan or Xrays done to rule out craniosynostosis?

If not, you may want to consider having that done just to be for sure.

If the band is causing skin irritations like you are describing, then

I would highly recommend not putting the band back on , it could

end up causing more harm.

Do you have any photos of in his STARband that you could share

with us? If so email them to plagiocephaly

Again, I am so sorry to read this......I know all too well how

frustrated & depressed you are about this, I've been there. Any

questions, don't hesitate to ask, you can also email me direct at

dj2kirby@...

Debbie Abby's mom 3/1/00 STARband 11/7/00-1/26/01 DOCGrad 2/16/01-

6/22/01

MI

> My son has been wearing the StarBand for 4 months or so, and there

> has been little to no improvement. My husband and I think that the

> band was made wrong, again. One would think that some significant

> improvement would have been made already. The orthosist says

> that 's red and irratated head is due to a skin alergy because

of

> the soap... I know that is NOT the case. I even said so. The

helmet

> constantly rotates by his eye and when roating, rubs the skin right

> off of his forehead! I'm almost tempted to not have my son

wear

> the stupid helmet anymore. His flat spot isn't that bad but enough

> to warrant him wearing it. It's just, if it's not doing anything,

> why continue to give him a raw forhead? This is so frusterating!

> Does anyone else know of another place in California besides Palo

> Alto that helps with the helmets so I can get a second opinion?

Help

> is greatly needed!

>

> Frustrated Mom

[Guest guest]

As far as I know, this orthotist has quite a few patients. I don't

think that he has been using the StarBand scanning technique for that

long though. Maybe a few years tops... We were initially told that

they were the only one's in CA that did the Helmets. Now I'm finding

out that there are others... is now a litte more than 10 months

old. His first Helmet was made when he was 6 mo. Which was WAY TOO

BIG!!! So it REALLY didn't work. His second helmet and one he is

using to date was given to him at 7 months, which Rotates constantly

like I said before. We were told that the rotation was perfectly

normal and to constantly put it back. Come on, if it doesn't stay in

place, how is it supposed to work? And the more you adjust it back

into place, the more it rotates back and gives a raw forehead!

's forehead is definately not due to any skin condition as we

were told. It's because it is constantly being rubbed...I hope it's

not too late for him to get another one if needed to work the way

it's supposed to. He has had a CT Scan done (in the very beginning)

and did rule out Cranio. I am currently looking into Cranial Tech

clinics as well as other clinics in CA that use the StarBand. This

has been such a nightmare!

Thank you Debbie and for all of your thoughts and support. I

need it right now!

Francine - 's Mom

Sacramento, CA

> > My son has been wearing the StarBand for 4 months or so, and

there

> > has been little to no improvement. My husband and I think that

the

> > band was made wrong, again. One would think that some

significant

> > improvement would have been made already. The orthosist says

> > that 's red and irratated head is due to a skin alergy

because

> of

> > the soap... I know that is NOT the case. I even said so. The

> helmet

> > constantly rotates by his eye and when roating, rubs the skin

right

> > off of his forehead! I'm almost tempted to not have my son

> wear

> > the stupid helmet anymore. His flat spot isn't that bad but

enough

> > to warrant him wearing it. It's just, if it's not doing

anything,

> > why continue to give him a raw forhead? This is so frusterating!

> > Does anyone else know of another place in California besides Palo

> > Alto that helps with the helmets so I can get a second opinion?

> Help

> > is greatly needed!

> >

> > Frustrated Mom

[Guest guest]

Francine:

Thanks for the addt'l information. There's no reason why shouldn't

have seen improvement after 4 mos other than an improperly fit band.

He doesn't have cranio & was young enough when you began treatment

that he by all rights, could very well be graduated now with good

improvement.

So didn't receive the traditional casting, he was scanned. Have

they been scanning him each month to check for improvement? Did you

ask how long they've used the scanning cast? This is relatively new,

so I'd bet it hasn't been much over a year if even.

It sounds to me that the scan cast has not been working properly

for him, if both bands were made way too big. It is common for many

bands to be a bit loose for the first week or 2 but they babies head

quickly grows into it.

And don't worry about it being too late to still get improvement if

you do switch bands. I too worried it was too late for Abby. We

switched Abby into a DOCband 2 wks after we terminated her failed

STARband. Abby was then 11.5 mos old. Abby wore one band for 4.5

mos and was still able to receive 50-60% correction of her severe

plagio, we really couldn't be any happier.

Again, I'm really sorry to hear of your problems. Don't give up hope

yet though, I hope you're able to find someone else in your area to

help. Please keep us updated. Best of luck!!!

Debbie Abby's mom DOCgrad

MI

> > > My son has been wearing the StarBand for 4 months or so, and

> there

> > > has been little to no improvement. My husband and I think that

> the

> > > band was made wrong, again. One would think that some

> significant

> > > improvement would have been made already. The orthosist

says

> > > that 's red and irratated head is due to a skin alergy

> because

> > of

> > > the soap... I know that is NOT the case. I even said so. The

> > helmet

> > > constantly rotates by his eye and when roating, rubs the skin

> right

> > > off of his forehead! I'm almost tempted to not have my son

> > wear

> > > the stupid helmet anymore. His flat spot isn't that bad but

> enough

> > > to warrant him wearing it. It's just, if it's not doing

> anything,

> > > why continue to give him a raw forhead? This is so

frusterating!

> > > Does anyone else know of another place in California besides

Palo

> > > Alto that helps with the helmets so I can get a second

opinion?

> > Help

> > > is greatly needed!

> > >

> > > Frustrated Mom

[Guest guest]

We were told that by using the scanning technology, that the StarBand

would fit a lot better than the traditional casting. Every month

gets his head scanned and every month we are told the same

story. He has lots of growth left and he should be hitting his

growth spurt where we'll really see a difference with the Helmet. So

far, no difference. It's like listening to a broken record. I'm

sorry, but it is so frustrating. And to be told that I was wrong

with the idea that the rotating helmet is what made my son's head

raw, and that I should not have taken the helmet off... Let me back

up for a second. Before was seen this last time, he had his

helmet off for his head to heal for approximately a week. And after

a week, 's head was finally no longer pink, but was peeling as

though he had a big sunburn... We were told that we should have kept

the helmet on doing 2 hrs. on/2 hrs. off for the week and that we

lost valuable time for his head to round out. There is no way that

it would have gotten better if we kept irritating it. It hasn't

changed in 4 months... Does he honestly think that something would

all of a sudden happen in 1 week?

I can't thank you all for the support. It is so difficult not to

have anyone around me to talk to that is going through or has gone

through this. I'm so glad that this message board exists... Thank's

for taking time to read my long-winded story...

Francine~'s Mom

Sacramento, CA

> > > > My son has been wearing the StarBand for 4 months or so, and

> > there

> > > > has been little to no improvement. My husband and I think

that

> > the

> > > > band was made wrong, again. One would think that some

> > significant

> > > > improvement would have been made already. The orthosist

> says

> > > > that 's red and irratated head is due to a skin alergy

> > because

> > > of

> > > > the soap... I know that is NOT the case. I even said so.

The

> > > helmet

> > > > constantly rotates by his eye and when roating, rubs the skin

> > right

> > > > off of his forehead! I'm almost tempted to not have my

son

> > > wear

> > > > the stupid helmet anymore. His flat spot isn't that bad but

> > enough

> > > > to warrant him wearing it. It's just, if it's not doing

> > anything,

> > > > why continue to give him a raw forhead? This is so

> frusterating!

> > > > Does anyone else know of another place in California besides

> Palo

> > > > Alto that helps with the helmets so I can get a second

> opinion?

> > > Help

> > > > is greatly needed!

> > > >

> > > > Frustrated Mom

[Guest guest]

Francine-

I would be frustrated too. I does sound like has a bad fit. It

shouldn't be rotating as you described. You did the right thing by

removing the helmet when his skin was irritated. If you'd have left

it on, it would have gotten worse and he'd have been out of the band

even longer.

Dane has very sensitive skin. He used to even be allergic to

disposable diapers. The only time he had skin issues is when he had

a super growth spurt and needed to have more of the inside shaved.

Maybe the casting is a necessary evil, like mentioned a few

weeks ago.

Hope you see correction very soon!

Dane's mom DOC Grad

> > > > > My son has been wearing the StarBand for 4 months or so,

and

> > > there

> > > > > has been little to no improvement. My husband and I think

> that

> > > the

> > > > > band was made wrong, again. One would think that some

> > > significant

> > > > > improvement would have been made already. The

orthosist

> > says

> > > > > that 's red and irratated head is due to a skin alergy

> > > because

> > > > of

> > > > > the soap... I know that is NOT the case. I even said so.

> The

> > > > helmet

> > > > > constantly rotates by his eye and when roating, rubs the

skin

> > > right

> > > > > off of his forehead! I'm almost tempted to not have

my

> son

> > > > wear

> > > > > the stupid helmet anymore. His flat spot isn't that bad

but

> > > enough

> > > > > to warrant him wearing it. It's just, if it's not doing

> > > anything,

> > > > > why continue to give him a raw forhead? This is so

> > frusterating!

> > > > > Does anyone else know of another place in California

besides

> > Palo

> > > > > Alto that helps with the helmets so I can get a second

> > opinion?

> > > > Help

> > > > > is greatly needed!

> > > > >

> > > > > Frustrated Mom

[Guest guest]

WOW Francine:

That is really disgusting I am so sorry - you've not been treated

well at all. I was also told that " I " put Abby's band on

wrong...hello???? How can a person possibly put the band on wrong???

I was also told the reason for no improvement was they were waiting

for Abby to hit a growth spurt, when I knew darn well & good she had

grown significantly while wearing her band.

You have done the right thing by keeping the band off to let his

skin heal up! Don't let anybody tell you different.

Hang in there, I strongly recommend you keep the band off him for now

& if you are anywhere near a Cranial Tech to see them, we drove 4 hrs

one way to our nearest clinic, but it was worth every screaming mile!

Debbie Abby's mom

MI

> > > > > My son has been wearing the StarBand for 4 months or so,

and

> > > there

> > > > > has been little to no improvement. My husband and I think

> that

> > > the

> > > > > band was made wrong, again. One would think that some

> > > significant

> > > > > improvement would have been made already. The

orthosist

> > says

> > > > > that 's red and irratated head is due to a skin alergy

> > > because

> > > > of

> > > > > the soap... I know that is NOT the case. I even said so.

> The

> > > > helmet

> > > > > constantly rotates by his eye and when roating, rubs the

skin

> > > right

> > > > > off of his forehead! I'm almost tempted to not have my

> son

> > > > wear

> > > > > the stupid helmet anymore. His flat spot isn't that bad

but

> > > enough

> > > > > to warrant him wearing it. It's just, if it's not doing

> > > anything,

> > > > > why continue to give him a raw forhead? This is so

> > frusterating!

> > > > > Does anyone else know of another place in California

besides

> > Palo

> > > > > Alto that helps with the helmets so I can get a second

> > opinion?

> > > > Help

> > > > > is greatly needed!

> > > > >

> > > > > Frustrated Mom

[Guest guest]

This sounds terrible, I am so sorry for your difficulties.

Did you get your StarBAND at the Center for Independent

Rehabilitation Services? That is where we just ordered ours from, now

I am worried we are headed for the same problems. Has anyone had a

good experience there?

[Guest guest]

Hi & welcome to our group!

What state do you live in? There are many many different clinics

that provide the STARband made by Orthomerica. The key to having

success with the STARband is an experienced orthotist. Did you ask

your orhotist what type of experiece he has in treating plagio babies

with the STARband? I cannot stress enough the importance of a

trained ortho. That is the key to success or failure with these

bands.

Could you please share more of your babies plagio story with us?

Age, name, etc.etc...How'd the casting go?

Welcome again.

Debbie Abby's mom DOCGrad

MI

> This sounds terrible, I am so sorry for your difficulties.

>

> Did you get your StarBAND at the Center for Independent

> Rehabilitation Services? That is where we just ordered ours from,

now

> I am worried we are headed for the same problems. Has anyone had a

> good experience there?

[Guest guest]

Debbie-

You are so wonderfully supportive. You already welcomed me and

advised me more than once! You can reread my intro about my son at

#42765 and #42451.

[Guest guest]

Oops!! LOL Well aren't I so sweet???? hehe.

I need some sleep!

Debbie Abby's mom

MI

> Debbie-

>

> You are so wonderfully supportive. You already welcomed me and

> advised me more than once! You can reread my intro about my son at

> #42765 and #42451.