Re: STARband fit issue

[Guest guest]

, Would it be possible for you to post a pic of the thin strip on the

inside of 's band? Luke's band is folding his ear at night and all day.

My ortho told me that with brachy the band will rotate and that I have to undo

the velcro and correct the band's position when it shifts. I have been doing

this almost every 30 minutes. I can't imagine this is good for Luke's

adjustment to the band or for his hearing on his right side from the velcro

being opened. He's been such a trooper so far. He hardly fusses when I fix it

and he is sleeping through the night, even though it is a restless sleep (he

keeps moving his head from side to side all through the night as if trying to

get comfortable).

My ortho also told me that I have to set my alarm at night to wake up and shift

the helmet back in place. I don't need an alarm because I am basically up all

night anyway from paranoia and checking his ear.

I called OrthoAmerica today and they told me their ortho will call mine to see

if anything can be done. I feel like I'm back in school and I " told " on

someone. But I felt that my ortho wasn't hearing my issues and I needed to get

some help. I didn't hear from either ortho's so I am calling them first thing

this morning and hopefully seeing my ortho this afternoon.

Thank you!

p.s. did you post pix of ?

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> Holly,

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> The padding that I was referring to is a very thin and small  strip (about

the lenght of a thumb and the depth of a fingernail)  that was added to the

top front of the band, right near where the hole is . It was not in an area

where head growth needed to occur. It was designed to hold the helmet in place

since 's growth was so slow. We were told it would not affect her

treatment if we did or did not add it, but it made me feel better because the

band didn't shift as much from the areas that were flat or slide into her eyes

when she shifted in bed. Apparantely, the fit of the band is somewhat dependent

upon the head shape. For brachy, it moves back and forth. Where there is

flatness, the helmet wants to move because there is nothing there to hold it. By

adding the padding in a different area, this kept it from shifting because the

band was tighter in that area.

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> I do believe that the STARbands are made to accomodate more growth than the

DOCbands, but that makes sense because they can be worn for longer. It also is

more common to go less regularly for adjustments so I'm not sure whether the

room for growth is more at the onset of treatment. Although 's band is

very fitted at the front, top, and sides, I can still fit my fingers half way

up the back of her head so I know that there's still a lot of room there.

Nothing has been shaved off of the back yet.

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> , mom to , 19 months 3 weeks

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> 21 weeks in STARband (4 to go) plus CST

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> land

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> preview image  Lilypie Baby Ticker  Lilypie Baby Ticker

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> Re: STARband fit issues

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> we had the same issue in our starband. you can see photos here

(http://shootingallens.blogspot.com/2008/12/helmet-woes.html) and here

(http://shootingallens.blogspot.com/2008/12/i-dont-know-what-to-do.html).

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> we had fit problems from the start that only got worse after several

adjustments. our original orthotist offered to get us a second band at no cost,

which we declined. after extensive research we ultimately decided to go with the

doc band (a 4-hour drive for us each way) and have not had a single fit issue

thus far. it's a real pain driving 500+ miles every other week, but i have no

regrets with this decision. here's alex in his doc band (and also a comparison):

http://shootingallens.blogspot.com/2009/01/compare-and-contrast.html

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> it's my personal belief (and i'm not a doctor, so take this however you like)

that there shouldn't be a need to add padding if the band is fitting correctly

from the start. just my $.02.

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> keep us posted and good luck!

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> holly

> mum to 10-month-old twin boys alex (in doc band since 1/5/09) and max (no

helmet required).

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