Crappy STARband, Orthoamerica customer service, Bad orthotist

October 27, 2009

I'm having issues with a poorly cast STARband originating from

Diebold, C.O., of Willowbrook Prosthetics in Lebanon, NH. He

apparently removed the cast while it was still too wet. I saw it

wilt when placed on a table, and expressed concern immediately. I

initially accepted assurances, but two months into treatment, now

recognize the same shape in the temples of both the helmet and my

child, and I don't think her face was " slanted " to begin with (though

the right side of her face was displaced posteriorly). Probably not

coincidentally, the helmet closure is 1/4 " higher in front of the gap.

The helmet has also persistently rotated, away from contact with the

anterior temple (daylight, a 3/8 " -1/2 " gap through which you can see

the ear), and into contact with the back of the posterior ear. I've

given Ortoamerica's online advice a persistent trial, rotating the

helmet to a better line and tightening it, but have found that

impossible except when the helmet is getting too tight. (During this

period I also notice regression in the asymmetry, apparently because

the back of the helmet hasn't been adjusted very much at all.)

My first recourse was to seek customer support from Orthoamerica, but

after submitting a HIPPA form and my phone number, all I got was a

rather rude, point-by-point denial of validity to every concern. Not

even an email address to submit photos. In their business model,

their " customer " is not my daughter, but the orthotist, therefore

they will only attempt to ascertain what assistance they can offer him.

(I did learn that the nearest facilities doing high volume and

presumably better quality work with STARband are located in

Manchester, NH and W. Springfield, MA, and only the latter has a

scanner.)

Next, I solicited opinions from orthotists I can actually bring Clara

to consult with. One local company, Yankee Medical, had originally

referred me to Willow Brook because they had lapsed in STARband

training, themselves. The orthotist I had previously spoken to,

Metson, refused to consult (didn't answer my call), and

someone else in the main office was doubtful they could do better. I

tend to believe it, because he also said something stupid about bands

being generally unable to affect ear asymmetry.

Then I found a very experienced pediatric orthotist, Debra Wilde of

Bio-Medic Appliances in Essex Junction, VT. She hasn't done a helmet

for plagio in five years, but was nonetheless impressive to me for

having worked on helmets in pre-FDA days at Stanford. She took

photos and surprised me by saying she would ask someone in charge at

Orthoamerica (don't remember the name, but she seemed to know who to

contact) about Clara, even though she doesn't have STARband

certification, either. We'll talk again in a few days, but if we do

end up able to get a helmet with her, it would be the Becker band

(active, looks like a STARband).

Next steps: Later today, I will confront our present orthotist and

see what more he is willing to do. I want a refund, but I'm pretty

sure that won't be on the bargaining table. I'll take new

stereograms just before the visit, as is my custom. It's been a

ridiculously long period between this time, six weeks, so that should

be decisive. The next day, we'll see Clara's new family doctor, who

replaces Margaret , M.D., the pediatrician who wouldn't

recommend helmeting even when Clara's eye tracking was affected. He

probably doesn't know anything about plagio, but at least he asked

before taking her on, and he has provided good prescription service

to my wife.

--

Thad Launderville

Montpelier, VT

Clara age 18.5 months, in STARband 2.5 months

October 27, 2009

Hi Thad, Forgive me...I have been reading the group emails on my phone, but

have not been able to regularly respond on my computer and I totally forgot to

contact you about your previous messages.

I had a similar experience. My son had a STARband that consistently rotated to

the left. I feel like I brought him to his ortho every other day because of the

rotation. It was folding his ear, it was covering his eye and making it

swollen. It never fit right. The adjustments just made unnecessary red marks

or heavy indentations in his forehead. I was so angry and upset.

I also contacted OrthoAmerica and while they were not rude, they gave me the

same speech about how they can't help because it is the orthotist who is their

customer.

I then consulted with this group and they gave me great advice about seeking

other opinions. However, the day before we were to go to another orthotist, I

think Luke had a growth spurt and his band was not rotating as much. And by

then, I was so exhausted from waking up at night to fix his band and going to

the ortho during the day that I think I convinced myself that the band was

fitting better. My ortho gave me the brilliant idea (insert sarcasm) to set my

alarm during the night so that I could fix his band while he slept. I did it

for 2 weeks, which looking back, was completely insane!

Long story short, Luke did make some progress in his STARband, however, because

of the rotation, I truly believe that while it helped in allowing growth and

curvature in the back, it created other issues because the holding points were

shifted from the rotation of the band.

I may not explain it clearly, but the holding points were supposed to be on the

posterior right and anterior left. If you put your hands in those positions and

then rotate your hands to the left about 1.5 inches, Luke ended up with some

flattening. The ortho insisted that this was not true, but I know it is. I

took pix regularly and was able to compare it to when he first started the band

to when he graduated. After being in the DOCband for the past 2 months, those

areas have filled out, thank goodness.

I guess what I am trying to say is that from my experience and your messages, it

does sound like something went wrong with the fitting. We had a STARscanner,

but Luke did not cooperate. It took over an hour to get ONE scan that seemed

okay, but he still moved slightly and I don't think it was correct. But the

ortho had reassured us that he thought it would be a good scan.

You seem to have a very good plan, so I'm not sure if I can offer any advice. I

think the best thing to do is go with your gut but remember that an ill fitting

band is an ill fitting band and may never fit correctly despite all the

adjustments.

I have to run, Luke is very demanding these days:)

Good luck!

Luke, 11.5 months

mild plagio, moderate brachy

NYC

>

> I'm having issues with a poorly cast STARband originating from

> Diebold, C.O., of Willowbrook Prosthetics in Lebanon, NH. He

> apparently removed the cast while it was still too wet. I saw it

> wilt when placed on a table, and expressed concern immediately. I

> initially accepted assurances, but two months into treatment, now

> recognize the same shape in the temples of both the helmet and my

> child, and I don't think her face was " slanted " to begin with (though

> the right side of her face was displaced posteriorly). Probably not

> coincidentally, the helmet closure is 1/4 " higher in front of the gap.

>

> The helmet has also persistently rotated, away from contact with the

> anterior temple (daylight, a 3/8 " -1/2 " gap through which you can see

> the ear), and into contact with the back of the posterior ear. I've

> given Ortoamerica's online advice a persistent trial, rotating the

> helmet to a better line and tightening it, but have found that

> impossible except when the helmet is getting too tight. (During this

> period I also notice regression in the asymmetry, apparently because

> the back of the helmet hasn't been adjusted very much at all.)

>

> My first recourse was to seek customer support from Orthoamerica, but

> after submitting a HIPPA form and my phone number, all I got was a

> rather rude, point-by-point denial of validity to every concern. Not

> even an email address to submit photos. In their business model,

> their " customer " is not my daughter, but the orthotist, therefore

> they will only attempt to ascertain what assistance they can offer him.

>

> (I did learn that the nearest facilities doing high volume and

> presumably better quality work with STARband are located in

> Manchester, NH and W. Springfield, MA, and only the latter has a

> scanner.)

>

> Next, I solicited opinions from orthotists I can actually bring Clara

> to consult with. One local company, Yankee Medical, had originally

> referred me to Willow Brook because they had lapsed in STARband

> training, themselves. The orthotist I had previously spoken to,

> Metson, refused to consult (didn't answer my call), and

> someone else in the main office was doubtful they could do better. I

> tend to believe it, because he also said something stupid about bands

> being generally unable to affect ear asymmetry.

>

> Then I found a very experienced pediatric orthotist, Debra Wilde of

> Bio-Medic Appliances in Essex Junction, VT. She hasn't done a helmet

> for plagio in five years, but was nonetheless impressive to me for

> having worked on helmets in pre-FDA days at Stanford. She took

> photos and surprised me by saying she would ask someone in charge at

> Orthoamerica (don't remember the name, but she seemed to know who to

> contact) about Clara, even though she doesn't have STARband

> certification, either. We'll talk again in a few days, but if we do

> end up able to get a helmet with her, it would be the Becker band

> (active, looks like a STARband).

>

> Next steps: Later today, I will confront our present orthotist and

> see what more he is willing to do. I want a refund, but I'm pretty

> sure that won't be on the bargaining table. I'll take new

> stereograms just before the visit, as is my custom. It's been a

> ridiculously long period between this time, six weeks, so that should

> be decisive. The next day, we'll see Clara's new family doctor, who

> replaces Margaret , M.D., the pediatrician who wouldn't

> recommend helmeting even when Clara's eye tracking was affected. He

> probably doesn't know anything about plagio, but at least he asked

> before taking her on, and he has provided good prescription service

> to my wife.

>

> --

> Thad Launderville

> Montpelier, VT

> Clara age 18.5 months, in STARband 2.5 months

>

November 3, 2009

Hi Thad,

How is the new band?

I remembered something today and thought it might help if you're still having

problems...I met a young couple on vacation this past summer and their son was

in a STARband. They said their ortho was at Tufts in Boston and they were

really happy with the progress their son was having. I don't have a name, but I

was just thinking that Boston is a lot closer than Clinton, CT for you. Just a

suggestion in case things aren't working out.

Luke, 11.3 months old

mild plagio, moderate brachy

STARband grad (4-6/09), 2 months in DOC band