HELP!!! ADOPTED 16 month with severe numbers

[Guest guest]

Hi,

Are you sure you cannot get insurance help for the band? Regardless,

it is well worth $4,000 for a chance to improve her head. Otherwise,

you will likely end up spending much more money and time over this.

Or ortho told us even at 12 months that there were no guarantees and

there could be no change. Although I don't think that was the expected

outcome. We've seen a fair amount of improvement since 16 months.

I've been tracking emails about older babies on this group for 8

months. I've also gone back through some of the older emails. From

the stories I've read, there is almost always at least some improvement

in older babies, even babies starting as late as 22 months. Sometimes

there is substantial improvement. Of the couple adopted cases I've

read about, the change was usually more. I highly doubt your

daughter's head will recover completely, but it most likely will

improve with a band.

Good luck.

Kathy, mom to 19.5 months, in Starband 7.5 months

Dc wrote:

So we drove 2.5 hours and talk to CT and they were like we should

be able to get our adopted daughters number cut in half so from 19 to

like 9 she said. Supposed to go monday for the digital image part and

they were gonna RUSH the helmet!

I call back today to ask for all her numbers and had to talk to someone

else and she gave me the numbers and said that we may be throwing our

money away because she is older and severe.........What should we

do? $4000 is not pocket change!

We consulted surgeons and the cost to help her would be $50000 which

may not be covered!

they can do it, but don't think insurance will pay!

If she was born from me we would have had the nipped in the butt! But

we just adopted her.....

I would LOVE to hear from anyone that had an older child....i know

there was one case out there that they have on there website, but this

girl told me and i am glad she was blunt that we MiGHT Not see any

results and the other worker said we should be able to cut her numbers

down some!

HELp, worried mom!

i just don't want her to grow up to be depressed because of severe head

abnormalness!

i will try to post photos of her in a folder called adopted!

[Guest guest]

Hi,

I just looked at the pictures. If I was you, I would try a band first

and a highly qualified osteopath in conjunction with the band. Maybe,

you could even go through two bands still. I know it is a lot of

money. However, if it works, it is much better than surgery.

Let us know if you need anything.

Kathy

Dc wrote:

So we drove 2.5 hours and talk to CT and they were like we should

be able to get our adopted daughters number cut in half so from 19 to

like 9 she said. Supposed to go monday for the digital image part and

they were gonna RUSH the helmet!

I call back today to ask for all her numbers and had to talk to someone

else and she gave me the numbers and said that we may be throwing our

money away because she is older and severe.........What should we

do? $4000 is not pocket change!

We consulted surgeons and the cost to help her would be $50000 which

may not be covered!

they can do it, but don't think insurance will pay!

If she was born from me we would have had the nipped in the butt! But

we just adopted her.....

I would LOVE to hear from anyone that had an older child....i know

there was one case out there that they have on there website, but this

girl told me and i am glad she was blunt that we MiGHT Not see any

results and the other worker said we should be able to cut her numbers

down some!

HELp, worried mom!

i just don't want her to grow up to be depressed because of severe head

abnormalness!

i will try to post photos of her in a folder called adopted!

[Guest guest]

I would go with a band from CT. There is no guarantee, but I see it as your best

chance. There have been good results starting at her age, and if you don't do it

you'll wonder if it was the right decision.

Also even if she was born to you - you might be in the same situation.

Unfortunately adoption isn't the only issue. There are lots of doctors who tell

parents " it will round out on its own " , " bands are a waste of money " ... I would

say just do what you can now, and don't look back.

-christine

sydney, 4 yrs, starband grad

>

> So we drove 2.5 hours and talk to CT and they were like we should be able to

get our adopted daughters number cut in half so from 19 to like 9 she said.

Supposed to go monday for the digital image part and they were gonna RUSH the

helmet!

>

> I call back today to ask for all her numbers and had to talk to someone else

and she gave me the numbers and said that we may be throwing our money away

because she is older and severe.........What should we do? $4000 is not pocket

change!

>

> We consulted surgeons and the cost to help her would be $50000 which may not

be covered!

> they can do it, but don't think insurance will pay!

>

> If she was born from me we would have had the nipped in the butt! But we just

adopted her.....

>

> I would LOVE to hear from anyone that had an older child....i know there was

one case out there that they have on there website, but this girl told me and i

am glad she was blunt that we MiGHT Not see any results and the other worker

said we should be able to cut her numbers down some!

>

> HELp, worried mom!

>

> i just don't want her to grow up to be depressed because of severe head

abnormalness!

>

> i will try to post photos of her in a folder called adopted!

>

[Guest guest]

Our son was younger when he was fitted in his first DOC Band and he started at 17mm (also severe). He got down to 9-10mm when he graduated from the first band and we debated for the next 7 weeks about continuing with a second band. We did end up doing a second band and got him down to 5mm. We had to pay for both bands out-of-pocket, which was a huge cost for us. But I have no regrets. During those 7 weeks between bands, I kept thinking about the regret I might have if we didn't do as much as we could while we had the chance. I think any improvement you can get when you're child has a severe case is worth the effort, time and money. There was a huge difference between the 17mm where we started and the 9-10mm when he graduated from band #1. If there's a chance for improvement, I'd do it. If not, you may always wonder what might have been possible.

Jill

Cade's mom (12 mo., 2 DOC Bands, grad 12.11.09)

Austin TX

[Guest guest]

Clara has left-sided plagio also, started treatment at 16 months, and

is definitely benefitting from her STARband, despite our having great

difficulties with the orthotist. The nice thing about STARband (if

you can find a recommended orthotist) is, the foam is thick, so you

won't likely get charged for two, even if the head grows a lot. But

I agree with the general consensus, Cranial Tech is the safe bet.

I've been lax with photos lately, and I'm unsure about our numbers,

but you can see where we started, at least, in the regular

alphabetical folders. I do think she had greater asymmetry in ears

and face than your daughter, probably because she acquired her

plagio /in utero/. I'll try and put up a current, non-stereographic

pic tomorrow night. I'm afraid that because Clara's helmet is

presently in need of adjustment, her head isn't at it's best, but

considered alongside the pictures already posted, that should give

you a good sense of what is possible, in time. (There are transient

shape changes all the time, and it can drive one insane. Better to

look at pictures.)

What seems to be happening with Clara is, both the bottom back and

crown of her skull have developed ridges of new growth that 1)

stopped the flat area from expanding, and 2) put new angles in it.

One ridge seems to represent growth along the lambdoid suture, while

the bump near her neck seems to emanate from the nuchal lines of the

occipital bone.

If I had to stop treatment today, I'd still be glad we did it, though

we're still not nearly done, and I know we could have gotten much

better treatment if we were anywhere near civilization. Clara had a

poorly tracking right eye, and the brim of her fisherman's hat used

to fold right over, she was so flat. I can already count these two

problems as successfully corrected.

I would further suggest that even minor improvements could have

residual benefit in later development, to the extent that they

disrupt the tendency to lay one's head on the same spot all the time.

--

Thad Launderville

Montpelier, VT

Clara age 21 1/2 months, in STARband ~5 1/2 months

On Jan 22, 2010, at 10:21 AM, Dc wrote:

> I would LOVE to hear from anyone that had an older child....i know

> there was one case out there that they have on there website, but

> this girl told me and i am glad she was blunt that we MiGHT Not see

> any results and the other worker said we should be able to cut her

> numbers down some!

[Guest guest]

I just have to say, what a cute girl! Congrats on the adoption. I hope that

your worries about her head shape don't dampen your joy over having you join

your family. She's lucky to have such an attentive, proactive mom on her side!

We're pretty new to this process, so I don't have a lot of advice. If it were

me, I think the $4000 toward a band and perhaps trying some alternative

therapies would definitely be worth giving a shot before I'd even consider

surgery. Could you maybe ask to speak to a manager of the CT office to try to

get some clarification on the vastly different responses you got from them?

In the end, once you've achieved whatever correction is possible with the route

you decide to go, at least she is a girl and her hair will help to cover up any

remaining flatness!

Best of luck to you!

Mom to , 9 months old, DOC Band 12/29

>

> So we drove 2.5 hours and talk to CT and they were like we should be able to

get our adopted daughters number cut in half so from 19 to like 9 she said.

Supposed to go monday for the digital image part and they were gonna RUSH the

helmet!

>

> I call back today to ask for all her numbers and had to talk to someone else

and she gave me the numbers and said that we may be throwing our money away

because she is older and severe.........What should we do? $4000 is not pocket

change!

>

> We consulted surgeons and the cost to help her would be $50000 which may not

be covered!

> they can do it, but don't think insurance will pay!

>

> If she was born from me we would have had the nipped in the butt! But we just

adopted her.....

>

> I would LOVE to hear from anyone that had an older child....i know there was

one case out there that they have on there website, but this girl told me and i

am glad she was blunt that we MiGHT Not see any results and the other worker

said we should be able to cut her numbers down some!

>

> HELp, worried mom!

>

> i just don't want her to grow up to be depressed because of severe head

abnormalness!

>

> i will try to post photos of her in a folder called adopted!

>

[Guest guest]

I have to say that I agree with everyone else. I would do the band. The money is a lot, but if you can even cut that number in half, it would be worth it.

I was also cautioned against expecting too much by everybody that i talked to. 's head improved a lot. She was a little younger than your LO when banded (14.5 months), but I still think it would be worth it. 's story illustrates that better than anybody else's.

I promised you info on CSt earlier. CST is basically a light touch approach on the head that attempts to free up any "stuck" bones so that the head can round out. It does so through the fluid and energy in the head. Yes, it sounds like voo doo, but there are several of us that believe that we see differenes. There are some that have documented differences in terms of measurements. Cranial osteopathy is similar, but it's not as light of a touch. I'm less familiar with this.

Here are some links to get you started:

www.upledger.com

(CST site)

www.cranialacademy.org

http://icpa4kids.com/index.php (for chiro) Re: HELP!!! ADOPTED 16 month with severe numbers

Hi-I think it's definitely worth trying the band first, before considering surgery. My son was banded at 17 months old, wore 2 DOCBands for 8 months and we went from about 15 mm to 5 mm of assymetry in that time (one of our numbers was 19 mm and we got that down to about 5 or 6 as well). I can still see the asym when he is in the tub, but not when his hair is dry and no one else notices it but me. It's way better then where we started and I'm thankful for that. Of course, head growth is key to getting correction with the band, so as long as she's thriving and growing, you should see at least some improvement (it will just be a longer process than if she were younger and hitting a bunch of growth spurts). I think CT just likes to keep your expectations realistic, which I think is the best thing to do, better than giving you false hope and then being disappointed. We also travelled 2.5 hours each way to CT (Charlotte), but it was well worth it. Please let me know if you have any other questions. Good luck! (Hi to everyone...sorry I've been MIA for a while)Jake-3 (DOCBand Grad 9/08)>> So we drove 2.5 hours and talk to CT and they were like we should be able to get our adopted daughters number cut in half so from 19 to like 9 she said. Supposed to go monday for the digital image part and they were gonna RUSH the helmet!> > I call back today to ask for all her numbers and had to talk to someone else and she gave me the numbers and said that we may be throwing our money away because she is older and severe.........What should we do? $4000 is not pocket change!> > We consulted surgeons and the cost to help her would be $50000 which may not be covered!> they can do it, but don't think insurance will pay!> > If she was born from me we would have had the nipped in the butt! But we just adopted her.....> > I would LOVE to hear from anyone that had an older child....i know there was one case out there that they have on there website, but this girl told me and i am glad she was blunt that we MiGHT Not see any results and the other worker said we should be able to cut her numbers down some!> > HELp, worried mom!> > i just don't want her to grow up to be depressed because of severe head abnormalness!> > i will try to post photos of her in a folder called adopted!>