Re: Banding in Florida ... looking for support

July 9, 2009

Welcome!

I believe there is a mom that recently joined our board from Tampa and she is

also going to West Coast, so hopefully she will respond to you. In the meantime,

you can find support here as well! It sounds like you have the ball rolling, so

if you have any questions, please let us know!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

>

> Hi all, my name is and I live in the Tampa " area " of Florida and I'm

posting with the hopes of finding someone that I can be like e-mail pals with,

maybe someone that lives in the same general area, as I'm dealing with banding

my 5.5 month old son. He has plagio and tort. He's in PT for the tort, but my

husband and I decided to pursue getting his head measured since he was already 5

months and we hadn't seen enough of an improvement with the repositioning in the

past 4 weeks (although we have been repositioning since 7 weeks, but without the

PT until a month ago). My son has 15.4mm asymmetry (per our scan from west coast

in Tampa) and we met with the craniofacial team and made the decision to get the

band. He will get his band on the 16th of this month and I'm just feeling bad,

like I should have done more sooner. So, my goal is to hopefully be " pen pals "

with someone who has gone through or is going through this also, just to have

some extra support -- someone who knows what I'm going through. Thanks in

advance

>

> Mother to Oliver ( " Mo " ) 5.5 months

> Getting StarBand 7.16 -- 15.4mm asymmetry

>

July 9, 2009

,

Hi. I actually don't live anywhere near you I live in Ohio. But my son is

getting his head scanned on Monday for his band from Hanger. He is 6 months old

born 1/20/09. I noticed the shape of his head around 3.5 months. I pointed it

out to my ped, but she said it will fix on it's own in a couple months. As time

went on I didn't see any improvement, it actually became worse. I pointed it

out to the pediatrician two more times and she just shrugged it off and said he

needed more tummy time. Around 5 months or so I just knew his head just didn't

look right and I had done a lot of research on plagio. I went around my ped and

saw a specialist in my area who walked in the room and just looked at my son and

said he needed a helmet. He suggested a helmet from a local place, but the

more I looked into them I found that they use a passive helmet. Their helmet

does not apply any counter pressure to the head. It basically just protects the

head from anymore outside pressure and allows the head to grow. Well I knew

that my sons head was past the point of just hoping the flat areas popped back

out. It would be like putting a bike helmet on his head. Their helmets were not

FDA approved either. So then I decided to go ahead with a STar Band and I found

one in my area and made an appointment. HOwever, my insurance then denied Star

Band and approved Hanger. So now here we are and I'm going to Hanger on Monday.

So that's my story. Don't know if that helps, but we seem to be going through

about the same thing. I also feel horrible! I keep telling my husband that I

feel like it's my fault. Especially because this is my second child. I feel

like I have neglected him because I'm busy with my two year old often and my

baby spent more time on his back because of it. I know how you are feeling. I

just tell myself that I can't do anything about what has already happened to his

head, but I can try to help it at least. So anyway.....long reply. I know I

like to hear other people's stories though. Keep us updated!