Any encouragement out there!? :)

[Guest guest]

Hello everyone!

I posted a message a while back about our son Ethan, who we adopted in April

from Taiwan at 6 months of age.

He was diagnosed (upon our arrival home) with severe plagio and we started his

helmet at 7 months old. We just had his final check-up this morning and while he

did make a lot of progress, he's still not in the " normal " range. They suggested

a second helmet. (For Starband families, he went from a 15.6 to an 8.8...but we

were told 5.0 and under would be normal range.)

Of course, I got teary-eyed and was somewhat disappointed. With some TLC and

encouragement from my husband, I am feeling better now.

In addition to having to go through another round with a new helmet, we were

denied reimbursement from our insurance. I am going to file an appeal but our

insurance plan excluded any type of " orthotic " or " cosmetic " issues. I provided

all of the documentation from the dr. stating it was medically necessary and I

even pulled the " adoption care " (which I NEVER do....) stating our son was not

in our care the first 6 months of his life, etc. And our letter was a big fat

no. Sigh.

Anyhow, just updating the group that our helmet adventure continues on...

Anyone out there familiar with Neighborhood Health Partnership (insurance in

South Florida) or with a second Star band? Successes? Challenges? Tips?

Anything is greatly appreciated!

Thanks,

*E

[Guest guest]

Hi - never had a second Starband, but my daughter wore it from 5.5 months to 14 months - went from 14.8 diagnal difference down to less than 2 mm diag. diff. hang it there. Does he have toritcollis? My child did and stil tilts a bit - she is about to be 4. She is fine and looks awesome. Worth it.

Any encouragement out there!?

Hello everyone!

I posted a message a while back about our son Ethan, who we adopted in April from Taiwan at 6 months of age.

He was diagnosed (upon our arrival home) with severe plagio and we started his helmet at 7 months old. We just had his final check-up this morning and while he did make a lot of progress, he's still not in the "normal" range. They suggested a second helmet. (For Starband families, he went from a 15.6 to an 8.8...but we were told 5.0 and under would be normal range.)

Of course, I got teary-eyed and was somewhat disappointed. With some TLC and encouragement from my husband, I am feeling better now.

In addition to having to go through another round with a new helmet, we were denied reimbursement from our insurance. I am going to file an appeal but our insurance plan excluded any type of "orthotic" or "cosmetic" issues. I provided all of the documentation from the dr. stating it was medically necessary and I even pulled the "adoption care" (which I NEVER do....) stating our son was not in our care the first 6 months of his life, etc. And our letter was a big fat no. Sigh.

Anyhow, just updating the group that our helmet adventure continues on...

Anyone out there familiar with Neighborhood Health Partnership (insurance in South Florida) or with a second Star band? Successes? Challenges? Tips?

Anything is greatly appreciated!

Thanks,

*E

[Guest guest]

I envy you, if that helps. Clara's stuck with her 8 mm diagonal

difference. (After stalking her with calipers for a couple weeks, I

finally made my attempt at measuring.)

--

Thad Launderville

town, VT

Clara age 2, STARband '10

[Guest guest]

That is a good point. A helmet can be a drag, but it can be much

better than the alternative.

Sorry, Thad, which calipers did you decide upon again? We are

thinking of using them to get a measurement of our 6 year old.

Maybe, I'm being optimistic, but he may have had a very small drop

in measurement with alternative therapies. I stick my fingers

through his hair at about 30 degrees at level 3. Some months ago I

estimated 6mm, and now I estimate 5mm. Although of course my

estimates are extremely imprecise.

Thanks,

Kathy

On 9/30/2010 9:10 PM, Thad Launderville wrote:

I envy you, if that helps. Clara's stuck with her 8 mm

diagonal

difference. (After stalking her with calipers for a couple

weeks, I

finally made my attempt at measuring.)

--

Thad Launderville

town, VT

Clara age 2, STARband '10

[Guest guest]

Our son, who we also adopted from Taiwan (at 9 months) had moderate plagio and

mild torticollis when he came home. He started his helmet (DOC band) at 10

months and will finish at 14 months. He made a lot of progress during that time

and although his head shape is improved, it is not perfect. The technicians

always comment how much progress he has made considering his age. We decided not

do a second band because of his older age (and we'd likely have to pay for it

out of pocket). However, since your son is still young, he will likely make

very good progress with his second helmet if you decide to go forward with it.

We are so looking forward to being done with the helmet (in about a month), I

can imagine how disappointing it would be to find out it isn't over.

I find it interesting that you are the third family I've heard of who adopted a

child from Taiwan who was in a helmet for some period of time.

[Guest guest]

I am just curious how much improvement did you guys have with your son? My little girl started at 11 months and we are at 15 months going this week to determine if they are going to try to shave more out of the helmet or get a new one. She was 11 mm and we are down to 9 but I so want more improvement and she does so well with the helmet I feel like I should continue if there is any chance for further improvement. I just can't get out my head how I wish my doctor had been more proactive - I started asking about it at 5 months! But he still thinks it will correct itself on its own. Maybe he is right but I am just not willing to take that chance!

From: cathy585 <cathy585@...>Plagiocephaly Sent: Fri, October 1, 2010 9:47:58 AMSubject: Re: Any encouragement out there!?

Our son, who we also adopted from Taiwan (at 9 months) had moderate plagio and mild torticollis when he came home. He started his helmet (DOC band) at 10 months and will finish at 14 months. He made a lot of progress during that time and although his head shape is improved, it is not perfect. The technicians always comment how much progress he has made considering his age. We decided not do a second band because of his older age (and we'd likely have to pay for it out of pocket). However, since your son is still young, he will likely make very good progress with his second helmet if you decide to go forward with it. We are so looking forward to being done with the helmet (in about a month), I can imagine how disappointing it would be to find out it isn't over. I find it interesting that you are the third family I've heard of who adopted a child from Taiwan who was in a helmet for some period of time.