Re: New here - intro and ????s

[Guest guest]

Hi & welcome to our group!

The condition Emilie was xrayed for is craniosynostosis, this is

premature fusing of skull bones, which causes a flat head. Most of

our plagio babies in this group have had xrays or a CTscan to rule

out cranio. Craniosynostosis is only corrected thru surgery.

Now, to answer your questions: I'll answer them after your questions.

>

> 1) Is getting this amount from my insurance good, or should I

expect more?

A) YES, this is a great amount. SO many of the members of this group

have been denied for their child's band/helmet. You are very

fortunate to be getting it paid and at 80%. Mine was paid 50% which

I was thrilled with. You are very fortunate.

> 2) How are some people on this board getting bands for much lower

> (like $900 total)?

A). There are 3 different types of bands or helmet children can

receive. There is a locally made helmet - this is available at your

local hospital thru a local orthotist. These helmets generally cost

about $800 on average I would say. The locally made helmets are

usually " passive " , meaning they don't apply any pressure to the

child's head, they simply leave room in the flat area for the head to

grow into over growth spurts.

Another common band is the " STARband " . This is made by Orthomerica,

and then the product is available at a local hospital (not ALL

hospitals) and your child is treated by orthotists. The orthotists

also treat other common orthotic devices, they are not solely trained

to treat plagio/banded babies. The STARbands usually cost between

$1,000-$1,500. The STARband is " active " meaning is applies pressures

to the babies head (VERY Mild pressures, nothing a baby would feel!)

which helps " push " the flat side of the babies head out over time.

FINALLY, the DOCband made by Cranial Technologies, which is the one

you're looking into. They have trained their orthotists to treat

plagio babies ONLY, that is their specialty. Their experience is

invaluable. The DOCband is also " active " . They cost more but from

personal experience, it is definitely worth every dime. Have you gone

to their website www.cranialtech.com ?

Both the DOCband & STARband are FDA approved.

For more info on the bands and plagio, check out the plagio parents

support page, this site has wonderful information on it.

www.plagiocephaly.org

> 3) Should I insist that Emilie see a neurosurgeon or craniofacial

> plastic surgeon before getting a helmet? I trust the pedi but

wonder

> if Emilie's case is mild enough to not need the helmet . . . But, I

> also don't want to wait to much longer to start the helmet since she

> is already 5 months old. Getting in to see a specialist could take

wks.

A) You might want to see a neurosurgeon, most in here have, but not

all. You do want to begin with a band at a younger age to get the

best & fastest results. If you feel comfortable with your ped., then

you might not want to see a neuro.. That's up to you!

>

> 4) Emilie really does not have any problems with her face (yet??).

> The back right side of her head is clearly flat (her tort is on the

> left neck muscle) but the pedi said that she had a mild to moderate

> case of plagio. I guess I should admit that her right eye does seem

> to be showing signs of a problem and her right ear is ever so

slightly

> ahead of her left (but you would have to measure to find this out).

> So, what I am getting at is, does she need the helmet? She is

already

> rolling over and almost sitting -- doesn't this physical activity

lend

> itself to fixing the plagio b/c the child is not on her back as

much?

A) It is true that once a baby spends less time on their back,

plagio might improve. It does all depend on the severity of her

plagio. If she has assymetries and is flat, then I would suggest

going ahead with the band. BUT, I have not seen Emilie so please

don't go by what I say! My daughter had a puffier cheek than the

other, ears were off slightly, one eye was droopier than the other

and a major flat right back side of her head.

>

> 5) How much do positional changes help? She has a mind of her own

and

> with the tort, it is impossible to get her to sleep at night in a

> different position. But, during the day (very recently) I hardly

ever

> put her on her back and her naps are on her side (with a " bumper " to

> prevent rolling).

A) Positional changes can help a lot. We've had some parents in

here with good success, others not so successful. Especially with

the tort., it is quite hard to reposition.

>

> 6) If we were only to have her wear a helmet at night (and during

the

> day when we are at home), how much longer would she have to wear the

> helmet in the long term vs. if she wore it all the time? I know you

> guys can't say for sure, but I would appreciate guesses!

A) I highly recommend keeping her in the band the full 23 hrs they

recommend. If it is off, the longer it will take to get correction,

and it might not be as good correction as if it was on full time. I

know, 23 hrs a day is a lot of time, but the time does fly by. Trust

me!

I am so happy you're a new member. I hope Emilie's xrays come back

ok. Be sure to let us know what they find and what decison you come

to. I know how difficult it is & it all seems so fast. YOu're doing

a great job with your daughter!

Debbie Abby's mom DOCGrad 6/22/01

MI