NEW MEASUREMENT UPDATE Re: Update on our Helmet status

[Guest guest]

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

>