Re: NEW MEASUREMENT UPDATE Re: Update on our Helmet status

[Guest guest]

Hi,

That is great news! I believe there was improvement. There could

have been some measurement error too, but I highly doubt enough to

account for all the drop. My guess is a lot of the improvement came

from the forehead. From following this list and studying 's

scans, I believe forehead asymmetry has the potential to improve

substantially even in older babies. 's back improved this

late. A lot of 's late growth was in the forehead, which did

not change his asymmetry numbers since 's asymmetry was largely

concentrated in the back. This Starband ortho is technically very

good. Judy Ann's CST may have helped also. I would not expect that

rate of improvement to continue long though.

Keep us updated! Hope things continue to go well.

-Kathy, mom to 28 months and 6 years

On 10/5/2010 12:51 PM, estrellavila1 wrote:

Hi everyone,

My 20 mo son (adjusted age 18.5 mo) just had is 2 wk check

up at CIRS for his updated Starband scan and measurements.

He has moderate plagio, flatness being on left side. Since

we got his helmet 2 weeks ago he has had 2 CST apts with

Judy Ann in Mountain View (THANK YOU KATHY FOR THE REC!!).

His original scan resulted in a assymmetry difference of

14.8 mm, the scan yesterday showed... drumroll please... a

difference of 11.1 mm.

Let me please qualify this insane decrease:

1) Ortho said perhaps the original scan was inaccurate as

these results are "tremendous" and "unlikely to repeat"

2) If original scan was wrong, great, that just means his

head was not as messed up as we thought

3) If the original scan was right, holy cow his head is

getting better and we were told it might not do anything

at all.

We also took him to PT yesterday morning and sure enough

he has leftover tightness from his undiagnosed tort as an

infant. I am hoping by doing PT, CST weekly, and the

helmet will treat my son's plagio. To be honest I had no

expectations that his head shape would improve due to his

"super old age". My personal goal was to just get "some"

improvement and not try to say he is going to get to 0 or

anything like that.

Visually his forehead does look a little better and the

large bump in the back seems to be distributing to the

other side instead of veering solely to the right.

I just wanted to share my joy and give all you parents out

there with "older" babies hope and the possibility of

treatment options. Our next scan will be in six weeks

unless his helmet gets too tight, etc.

Estrella

>

> The Monday after labor day weekend we finally got the

script for the helmet after a lot of fighting and a letter

from CIRS Palo Alto. Our pediatrician was the one that

actually wrote the Rx, and not Dr. Menard.

>

> I don't really want to go into the details other than

that as I do not know the entire dialogue that occurred,

but the end result is that my now 20 month old son,

adjusted age 18 months, just got his helmet on Tuesday. He

has no problems with it so far. Today we are doing the 4

hours on and 1 hr off rotation.

>

> I am not sure why Kaiser had such a huge problem

getting the Rx to an older baby, especially when his

measurements were 14.8mm asymmetry. If you know or meet

anyone in your playgroups who experiences something

similar to this let them know they can always go to CIRS

and just pay for a scan, even if it is just peace of mind.

>

> Does anyone know how I can file a complaint about the

lack of head follow up procedures? I really dont want this

to happen to anyone else because quite frankly it was a

completely unecessary event. My son should have just

gotten a helmet at 8 months.

>

> Estrella

>

[Guest guest]

Oddly a lot of the correction was in the back. While some did occur in the forehead, the back left side grew out more. We were able to get a scan of the two measurements overlapping which was very interesting to look at.

I doubt we will see change like this again, but I will take whatever I can get!

Estrella Moeller

From: Kathy Lora Jensen <kathylorajensen@...>Plagiocephaly Sent: Tue, October 5, 2010 1:29:00 PMSubject: Re: NEW MEASUREMENT UPDATE Re: Update on our Helmet status

Hi,That is great news! I believe there was improvement. There could have been some measurement error too, but I highly doubt enough to account for all the drop. My guess is a lot of the improvement came from the forehead. From following this list and studying 's scans, I believe forehead asymmetry has the potential to improve substantially even in older babies. 's back improved this late. A lot of 's late growth was in the forehead, which did not change his asymmetry numbers since 's asymmetry was largely concentrated in the back. This Starband ortho is technically very good. Judy Ann's CST may have helped also. I would not expect that rate of improvement to continue long though.Keep us updated! Hope things continue to go well.-Kathy, mom to 28 months and 6 yearsOn 10/5/2010 12:51 PM, estrellavila1 wrote:

Hi everyone, My 20 mo son (adjusted age 18.5 mo) just had is 2 wk check up at CIRS for his updated Starband scan and measurements. He has moderate plagio, flatness being on left side. Since we got his helmet 2 weeks ago he has had 2 CST apts with Judy Ann in Mountain View (THANK YOU KATHY FOR THE REC!!).His original scan resulted in a assymmetry difference of 14.8 mm, the scan yesterday showed... drumroll please... a difference of 11.1 mm.Let me please qualify this insane decrease:1) Ortho said perhaps the original scan was inaccurate as these results are "tremendous" and "unlikely to repeat"2) If original scan was wrong, great, that just means his head was not as messed up as we thought3) If the original scan was right, holy cow his head is getting better and we were told it might not do anything at all.We also took him to PT yesterday morning and sure enough he has leftover tightness from his

undiagnosed tort as an infant. I am hoping by doing PT, CST weekly, and the helmet will treat my son's plagio. To be honest I had no expectations that his head shape would improve due to his "super old age". My personal goal was to just get "some" improvement and not try to say he is going to get to 0 or anything like that.Visually his forehead does look a little better and the large bump in the back seems to be distributing to the other side instead of veering solely to the right.I just wanted to share my joy and give all you parents out there with "older" babies hope and the possibility of treatment options. Our next scan will be in six weeks unless his helmet gets too tight, etc.Estrella>> The Monday after labor day weekend we finally got the script for the helmet after a lot of fighting and a letter from CIRS Palo Alto. Our pediatrician was the one that actually wrote the Rx, and not Dr. Menard.> > I don't really want to go into the details other than that as I do not know the entire dialogue that occurred, but the end result is that my now 20 month old son, adjusted age 18 months, just got his helmet on Tuesday. He has no problems with it so far. Today we are doing the 4 hours on and 1 hr off rotation. > > I am not sure why Kaiser had such a huge problem getting the Rx to an older baby, especially when his measurements were 14.8mm asymmetry. If you know or meet anyone in your playgroups who experiences something similar to this let them know they can always go to

CIRS and just pay for a scan, even if it is just peace of mind. > > Does anyone know how I can file a complaint about the lack of head follow up procedures? I really dont want this to happen to anyone else because quite frankly it was a completely unecessary event. My son should have just gotten a helmet at 8 months.> > Estrella>

[Guest guest]

Wow! so he only has a 3mm asymmetry now? tbh my daughter only wore her helmut like 3 days and I wanted to take a before shot in the tub and her head suddenly looks so much better. I don't know if it's mommies wishful thinking or what. So excited for you. It's hard to find older results.kim

[Guest guest]

Estrella,What wonderful news!!! Congratulations! Thanks for sharing your story. I know it offers hope to some on the board who are stuck treating later rather than sooner. Keep us posted!-AmyFrom: estrellavila1 <estrellavila1@...>Plagiocephaly Sent: Tue, October 5, 2010 3:51:41 PMSubject: NEW MEASUREMENT UPDATE Re: Update on our Helmet status

Hi everyone,

My 20 mo son (adjusted age 18.5 mo) just had is 2 wk check up at CIRS for his updated Starband scan and measurements. He has moderate plagio, flatness being on left side. Since we got his helmet 2 weeks ago he has had 2 CST apts with Judy Ann in Mountain View (THANK YOU KATHY FOR THE REC!!).

His original scan resulted in a assymmetry difference of 14.8 mm, the scan yesterday showed... drumroll please... a difference of 11.1 mm.

Let me please qualify this insane decrease:

1) Ortho said perhaps the original scan was inaccurate as these results are "tremendous" and "unlikely to repeat"

2) If original scan was wrong, great, that just means his head was not as messed up as we thought

3) If the original scan was right, holy cow his head is getting better and we were told it might not do anything at all.

We also took him to PT yesterday morning and sure enough he has leftover tightness from his undiagnosed tort as an infant. I am hoping by doing PT, CST weekly, and the helmet will treat my son's plagio. To be honest I had no expectations that his head shape would improve due to his "super old age". My personal goal was to just get "some" improvement and not try to say he is going to get to 0 or anything like that.

Visually his forehead does look a little better and the large bump in the back seems to be distributing to the other side instead of veering solely to the right.

I just wanted to share my joy and give all you parents out there with "older" babies hope and the possibility of treatment options. Our next scan will be in six weeks unless his helmet gets too tight, etc.

Estrella

>

> The Monday after labor day weekend we finally got the script for the helmet after a lot of fighting and a letter from CIRS Palo Alto. Our pediatrician was the one that actually wrote the Rx, and not Dr. Menard.

>

> I don't really want to go into the details other than that as I do not know the entire dialogue that occurred, but the end result is that my now 20 month old son, adjusted age 18 months, just got his helmet on Tuesday. He has no problems with it so far. Today we are doing the 4 hours on and 1 hr off rotation.

>

> I am not sure why Kaiser had such a huge problem getting the Rx to an older baby, especially when his measurements were 14.8mm asymmetry. If you know or meet anyone in your playgroups who experiences something similar to this let them know they can always go to CIRS and just pay for a scan, even if it is just peace of mind.

>

> Does anyone know how I can file a complaint about the lack of head follow up procedures? I really dont want this to happen to anyone else because quite frankly it was a completely unecessary event. My son should have just gotten a helmet at 8 months.

>

> Estrella

>