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Worried. How loose was your DOC initially?

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Hi Everyone!

My daughter has Brachycephaly and was fitted for her DOC

last week. It is so loose that it squishes her eyes and her ears into

strange shapes as she moves around. I was instructed to readjust the band

when it does that… problem is… I have to do that 1,000 times a day…

it’s ridiculous. My husband and I are VERY concerned that the

pressure on her eyebrows and ears may create problems and/or malformations in

those areas. It’s like we’re fixing one problem and replacing

it with another. It’s quite distressing.

Would you please share with us your experience with your

DOC? How did it fit in the beginning? Please be specific…

thank you!

Fondly,

and Stefan

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Hi and Stefan

Some small movement in all types of bands is to be expected due to

the spaces left for growth- they have nothing to cling to and your

daughter will grow into them.Typically babies get a bit of an angry

face if the band pushes forward, and you do have to readjust arouond

the ears, say if they have been sleeping and the band has shifted.

However- the amount of shifting you are seeing seems beyond that, so

I would return to the orthotist and get a check on it. The odd

contact with the ears won't hurt and you just readjust, continual

rubbing and squishing may create discomfort and red marks.

I found it hard to know if it was in the right position for the

first few weeks. It certainly doesn't stay still, but it shouldn't

require continual adjustment. Good luck with it.

Hannah

Mum to Lucia, London, UK

Plagio, Cranio helmet, 4th July '04

> Hi Everyone!

>

>

>

> My daughter has Brachycephaly and was fitted for her DOC last

week. It

> is so loose that it squishes her eyes and her ears into strange

shapes

> as she moves around. I was instructed to readjust the band when

it does

> that. problem is. I have to do that 1,000 times a day. it's

ridiculous.

> My husband and I are VERY concerned that the pressure on her

eyebrows

> and ears may create problems and/or malformations in those areas.

It's

> like we're fixing one problem and replacing it with another. It's

quite

> distressing.

>

>

>

> Would you please share with us your experience with your DOC? How

did

> it fit in the beginning? Please be specific. thank you!

>

>

>

> Fondly,

>

> and Stefan

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Ask for an earlier adjustment appointment if you are worried (no

permanent damage to eyes/ears can happen from the shifting). Alot of

times just a quick shave here and there will lessen the shifting. A

little loose is the norm though, otherwise there would be no room

left to grow into. I know ours was a bit awkward at first. It

scrunched his eyebrows down where he looked angry. After his first

adjustment the band then shifted to his left ear. That wasn't much

better because sometimes it would fold the ear down. Anyway, it

seemed to fit much better about the second week after it " settled "

into place. More than likely a growth spurt allowed it to fit snugger.

Good luck,

Crista-Grayslake

D-12 mo old-brachy DOCgrad

> Hi Everyone!

>

>

>

> My daughter has Brachycephaly and was fitted for her DOC last

week. It

> is so loose that it squishes her eyes and her ears into strange

shapes

> as she moves around. I was instructed to readjust the band when it

does

> that. problem is. I have to do that 1,000 times a day. it's

ridiculous.

> My husband and I are VERY concerned that the pressure on her

eyebrows

> and ears may create problems and/or malformations in those areas.

It's

> like we're fixing one problem and replacing it with another. It's

quite

> distressing.

>

>

>

> Would you please share with us your experience with your DOC? How

did

> it fit in the beginning? Please be specific. thank you!

>

>

>

> Fondly,

>

> and Stefan

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Hi ,

Nice to see an update from you! Looseness is a common post here,

esp at the beginning of treatment. In Hannah's plagio kids folder

you'll see a pic called " GAP, " which illustrates very will what I'm

about to try and explain, LOL! CT takes a cast of your baby's head,

and then basically corrects it to make it the desired shape, and

that is what the helmet is made from. So, the helmet she is wearing

is made to her desired shape, obviously leaving lots of gapping

areas. In Hannah's case the helmet only touched her head in her

protruding back left and front right areas. It basically teetered

back and forth there, but as she filled in and improved it began to

fit better (Her first helmet did this the most, as that was when she

was the most severe). It would slide funny and cause me to need to

adjust it, especially when she was lying down or had her head

resting against something. The other thing it will do, especially

with chubbier babies, is give them " angry face. " The band can push

down the chub on the forehead, leaving the baby to have squished

angry looking eyes. This is all common. In your daughter's case

w/a brachy shape, the holding points are both of the protruding

sides, and her gap would be all the way accross the back. Is this

right? Is she strictly brachy or a combo? The helmet shouldn't

squish her ears or effect her vision though. It should be low,

sometimes lower than you'd like it, simply because that lower

forehead area is an important holding point. Is there any way you

can post some pictures of your concerns? I hope my explanation made

sense to you!

, mom to Hannah, DOCgrad

Cape Cod, Ma

> Hi Everyone!

>

>

>

> My daughter has Brachycephaly and was fitted for her DOC last

week. It

> is so loose that it squishes her eyes and her ears into strange

shapes

> as she moves around. I was instructed to readjust the band when

it does

> that. problem is. I have to do that 1,000 times a day. it's

ridiculous.

> My husband and I are VERY concerned that the pressure on her

eyebrows

> and ears may create problems and/or malformations in those areas.

It's

> like we're fixing one problem and replacing it with another. It's

quite

> distressing.

>

>

>

> Would you please share with us your experience with your DOC? How

did

> it fit in the beginning? Please be specific. thank you!

>

>

>

> Fondly,

>

> and Stefan

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Hi ,

My ds had a STARband and not a DOC to treat brachy as well and I too

was concerned about the looseness in the beginning. It never

bothered his ears at all but it always seemed to slide down a little

close to his eyes. I was reassured it was normal but at one time,

the orthotist did add a small thin layer of foam to the bottom back

near his neck. I don't think that they can do this in the beginning

of treatment because perhaps becasue with brachy there is not much in

that area to " grab " onto yet. I think that as your daughter's head

starts to fill out (and it seems like it fills out from the bottom

up), it should fit better and not shift so much. My son's band never

pushed on his eyes at all (giving that " angry eye " look).

I have 4 views of the band in his folder, but again, it's a STAR not

a DOC. When he layed on his back, neither of his ears were pushed

forward but the gap above his eyes did increase some He always

seemed to have to tip his head back a little further to be able to

see higher.

I hope this helps you some. I'm sure that your ortho would try to

accommodate you if you wanted to be seen sooner to check it.

Sue

Colin F., 1

brachy, STARband grad.

> Hi Everyone!

>

>

>

> My daughter has Brachycephaly and was fitted for her DOC last

week. It

> is so loose that it squishes her eyes and her ears into strange

shapes

> as she moves around. I was instructed to readjust the band when it

does

> that. problem is. I have to do that 1,000 times a day. it's

ridiculous.

> My husband and I are VERY concerned that the pressure on her

eyebrows

> and ears may create problems and/or malformations in those areas.

It's

> like we're fixing one problem and replacing it with another. It's

quite

> distressing.

>

>

>

> Would you please share with us your experience with your DOC? How

did

> it fit in the beginning? Please be specific. thank you!

>

>

>

> Fondly,

>

> and Stefan

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