moving forward with STARband

[Guest guest]

I posted recently about my daughter Zia (20+ months) and our decision

to move forward with banding, despite her (advanced ;-)) age. We made

the 3.5-hour trek to Oakland, CA (from Chico, where we live),

yesterday, had our appointment this morning (at CIRS, for a

STARband), and returned home this evening. A long, tiring journey,

but I am feeling that we are doing the right thing. Because Zia is

older, the orthotist thinks that our regular appointments will only

need to be every 6 weeks or so, though there will initially be more

frequent visits to get things going.

One especially good thing that came out of the appointment is the

fact that the orthotist feels that she saw some remaining evidence of

torticollis. Zia was never diagnosed with tort, though we did do PT/

CST when she was 7 - 9 months, which I feel helped. It looks like I

will pursue that again . . .

We ordered a pink helmet, so now I am thinking about decorating with

her name and other details. I know there's been a lot about that, so

I will check the archives.

Thank you to those of you who responded to my earlier posts. I am

sorry not to have replied individually, but things have been

especially busy/hectic recently.

Amy, Chico

Zia (20 months, mild plagio, mild/moderate brachy)

STARband soon

[Guest guest]

keeping my fingers crossed for you. I hope you'll see some good correction. We

went to CIRS in Palo Alto several years ago.

-christine

sydney, 4.5 yrs, starband grad

>

> I posted recently about my daughter Zia (20+ months) and our decision

> to move forward with banding, despite her (advanced ;-)) age. We made

> the 3.5-hour trek to Oakland, CA (from Chico, where we live),

> yesterday, had our appointment this morning (at CIRS, for a

> STARband), and returned home this evening. A long, tiring journey,

> but I am feeling that we are doing the right thing. Because Zia is

> older, the orthotist thinks that our regular appointments will only

> need to be every 6 weeks or so, though there will initially be more

> frequent visits to get things going.

>

> One especially good thing that came out of the appointment is the

> fact that the orthotist feels that she saw some remaining evidence of

> torticollis. Zia was never diagnosed with tort, though we did do PT/

> CST when she was 7 - 9 months, which I feel helped. It looks like I

> will pursue that again . . .

>

> We ordered a pink helmet, so now I am thinking about decorating with

> her name and other details. I know there's been a lot about that, so

> I will check the archives.

>

> Thank you to those of you who responded to my earlier posts. I am

> sorry not to have replied individually, but things have been

> especially busy/hectic recently.

>

> Amy, Chico

> Zia (20 months, mild plagio, mild/moderate brachy)

> STARband soon

>

[Guest guest]

I am so glad you are going forward! As soon as I get that stupid prescription I

will get a helmet for my son. Maybe we will see eachother at CIRS! It would be

nice to talk to someone with an older child going through this whole process.

> >

> > I posted recently about my daughter Zia (20+ months) and our decision

> > to move forward with banding, despite her (advanced ;-)) age. We made

> > the 3.5-hour trek to Oakland, CA (from Chico, where we live),

> > yesterday, had our appointment this morning (at CIRS, for a

> > STARband), and returned home this evening. A long, tiring journey,

> > but I am feeling that we are doing the right thing. Because Zia is

> > older, the orthotist thinks that our regular appointments will only

> > need to be every 6 weeks or so, though there will initially be more

> > frequent visits to get things going.

> >

> > One especially good thing that came out of the appointment is the

> > fact that the orthotist feels that she saw some remaining evidence of

> > torticollis. Zia was never diagnosed with tort, though we did do PT/

> > CST when she was 7 - 9 months, which I feel helped. It looks like I

> > will pursue that again . . .

> >

> > We ordered a pink helmet, so now I am thinking about decorating with

> > her name and other details. I know there's been a lot about that, so

> > I will check the archives.

> >

> > Thank you to those of you who responded to my earlier posts. I am

> > sorry not to have replied individually, but things have been

> > especially busy/hectic recently.

> >

> > Amy, Chico

> > Zia (20 months, mild plagio, mild/moderate brachy)

> > STARband soon

> >

>

[Guest guest]

Wow - it's great to hear that they agreed to do it. Hopefully, you'll get the

correction that you are looking for.

>

> I posted recently about my daughter Zia (20+ months) and our decision

> to move forward with banding, despite her (advanced ;-)) age. We made

> the 3.5-hour trek to Oakland, CA (from Chico, where we live),

> yesterday, had our appointment this morning (at CIRS, for a

> STARband), and returned home this evening. A long, tiring journey,

> but I am feeling that we are doing the right thing. Because Zia is

> older, the orthotist thinks that our regular appointments will only

> need to be every 6 weeks or so, though there will initially be more

> frequent visits to get things going.

>

> One especially good thing that came out of the appointment is the

> fact that the orthotist feels that she saw some remaining evidence of

> torticollis. Zia was never diagnosed with tort, though we did do PT/

> CST when she was 7 - 9 months, which I feel helped. It looks like I

> will pursue that again . . .

>

> We ordered a pink helmet, so now I am thinking about decorating with

> her name and other details. I know there's been a lot about that, so

> I will check the archives.

>

> Thank you to those of you who responded to my earlier posts. I am

> sorry not to have replied individually, but things have been

> especially busy/hectic recently.

>

> Amy, Chico

> Zia (20 months, mild plagio, mild/moderate brachy)

> STARband soon

>

[Guest guest]

Amy,

I have been reading this board on and off for a while, and was meaning for a

long time to reply to your posts. I was going to say that I think you should go

ahead with banding if you can, and then it took me so long to get around to

saying it that I didn't have to.

I am so happy that you were able to get a prescription and went ahead with

it!!!!! My son was in a Starband from 6-9 months, which did largely correct his

plagio, but left him still with some brachy, 89% (about the same as your

daughter, right?). I wanted a second band but nobody else saw the need and I

didn't push hard enough so we never got one. It has driven me crazy since then.

It is a daily struggle for me not to obsess about it.

The truth is that my son's head looks well within the range of normal, but I

just wish I had done all I could to improve it. So, even if you get only a

little correction, if you are anything like me you will be glad you did it.

Better late than never, too! I tried at 18 months but nobody would help, and

then ... my son's head DID grow a lot over the next half year.

By the way, I looked at your pics, and for the record I do think Zia looks

totally cute and her head is a normal human shape. Just want to make it clear

that I thoroughly approve of your banding Zia because of my " do everything you

can " motto, rather than because her head is obviously misformed (which it's

not).

Anyway, best of luck to you and Zia! Keep us posted with the progress!

>

> I posted recently about my daughter Zia (20+ months) and our decision

> to move forward with banding, despite her (advanced ;-)) age. We made

> the 3.5-hour trek to Oakland, CA (from Chico, where we live),

> yesterday, had our appointment this morning (at CIRS, for a

> STARband), and returned home this evening. A long, tiring journey,

> but I am feeling that we are doing the right thing. Because Zia is

> older, the orthotist thinks that our regular appointments will only

> need to be every 6 weeks or so, though there will initially be more

> frequent visits to get things going.

>

> One especially good thing that came out of the appointment is the

> fact that the orthotist feels that she saw some remaining evidence of

> torticollis. Zia was never diagnosed with tort, though we did do PT/

> CST when she was 7 - 9 months, which I feel helped. It looks like I

> will pursue that again . . .

>

> We ordered a pink helmet, so now I am thinking about decorating with

> her name and other details. I know there's been a lot about that, so

> I will check the archives.

>

> Thank you to those of you who responded to my earlier posts. I am

> sorry not to have replied individually, but things have been

> especially busy/hectic recently.

>

> Amy, Chico

> Zia (20 months, mild plagio, mild/moderate brachy)

> STARband soon

>

[Guest guest]

Amy,

Just wanted to see how Zia was doing with her helmet and if things were moving along. My son just got his starband last week (by the time we finally got it he was 19.5 mo) and we have our next apt Oct 4 and we will also have had 2 CST treatments under our belts. He is having a hard time sleeping and gets hot a lot but other than that he is a happy normal kid.

Did Zia get rescanned? Just curious since it sounds like our older kids might be in the same boat and I am sure anyone with older toddlers thinking about getting helmets etc would love the info on her progress also. Estrella Moeller

From: R <sadietheseamstrix@...>Plagiocephaly Sent: Tue, September 28, 2010 7:46:34 AMSubject: Re: moving forward with STARband

Amy,I have been reading this board on and off for a while, and was meaning for a long time to reply to your posts. I was going to say that I think you should go ahead with banding if you can, and then it took me so long to get around to saying it that I didn't have to. I am so happy that you were able to get a prescription and went ahead with it!!!!! My son was in a Starband from 6-9 months, which did largely correct his plagio, but left him still with some brachy, 89% (about the same as your daughter, right?). I wanted a second band but nobody else saw the need and I didn't push hard enough so we never got one. It has driven me crazy since then. It is a daily struggle for me not to obsess about it. The truth is that my son's head looks well within the range of normal, but I just wish I had done all I could to improve it. So, even if you get only a little correction, if you are anything like me you will be glad you did it.

Better late than never, too! I tried at 18 months but nobody would help, and then ... my son's head DID grow a lot over the next half year.By the way, I looked at your pics, and for the record I do think Zia looks totally cute and her head is a normal human shape. Just want to make it clear that I thoroughly approve of your banding Zia because of my "do everything you can" motto, rather than because her head is obviously misformed (which it's not).Anyway, best of luck to you and Zia! Keep us posted with the progress!>> I posted recently about my daughter Zia (20+ months) and our decision > to move forward with banding, despite her (advanced ;-)) age. We made > the 3.5-hour trek to Oakland, CA

(from Chico, where we live), > yesterday, had our appointment this morning (at CIRS, for a > STARband), and returned home this evening. A long, tiring journey, > but I am feeling that we are doing the right thing. Because Zia is > older, the orthotist thinks that our regular appointments will only > need to be every 6 weeks or so, though there will initially be more > frequent visits to get things going.> > One especially good thing that came out of the appointment is the > fact that the orthotist feels that she saw some remaining evidence of > torticollis. Zia was never diagnosed with tort, though we did do PT/ > CST when she was 7 - 9 months, which I feel helped. It looks like I > will pursue that again . . .> > We ordered a pink helmet, so now I am thinking about decorating with > her name and other details. I know there's been a lot about that,

so > I will check the archives.> > Thank you to those of you who responded to my earlier posts. I am > sorry not to have replied individually, but things have been > especially busy/hectic recently.> > Amy, Chico> Zia (20 months, mild plagio, mild/moderate brachy)> STARband soon>

[Guest guest]

,

's head also grew quite a bit right after she got out of her band at

around 20 months. She grew more between 20 and 24 months than the charts said

that she should have. So, I agree that it isn't something that anyone can

predict.

I still sometimes look at her head and wonder how she would look differently if

she didn't have brachy, but I am working every day on letting that go. Every

morning, she carefully selects out her clothes, shoes, earings, and dictates how

she wants her hair done. She proudly looks in the mirror and declares that she

looks beautiful. Who am I to tell her that there is anything wrong with her head

shape? She feels good about herself and her head is mild enough not to cause

medical difficulties. The only thing that I notice is that her swimming goggles

slide off easier, but I'm not sure whether that is because of the flat part on

her head or the small size of her head.

Developmentally, she is ahead of the game. I just got the developmental testing

results back from a developmental study that she participates in. Her overall

score was 2.5 standard deviations above normal. She was above average to very

high in all developmental areas. The testing says that at the age of 36 months,

she was functioning like a 4 to and 4.5 year old.

She is involved with taking swimming lessons and will start dance lessons in a

couple of weeks. She moved up to the invitation only preschool gymnastics class

and blows me away with the things that she is doing. We are focusing on other

things these days. It feels good to spend my money on these things rather than

additional treatments for her head.

Our current struggles are related to her reflux and now possible Celiacs

disease. We are suspecting other food allergies and intolerances but this is

difficult to get a handle on. She is complaining frequently of tummy pain and we

are trying to figure out what is causing it.

But, I am confident that my daughter is going to be just fine - brachy or no

brachy. I am the only one who needs to get over it.

Your son is younger than my daughter so more than likely, time will help you not

to obsess. As he gets older, personality and skills will emerge and help you to

focus on other things. I also have found it helpful to stop getting posts via

email. This way, I don't read everything. Because the topic and group is dear to

my heart, I am checking in periodically, but it helps not to focus on it every

day.

I hope that time will help you as well.

, mom to , 3 years

STARband grad at 20.5 months (May 2009)

Chiro and CST

land

> >

> > I posted recently about my daughter Zia (20+ months) and our decision

> > to move forward with banding, despite her (advanced ;-)) age. We made

> > the 3.5-hour trek to Oakland, CA (from Chico, where we live),

> > yesterday, had our appointment this morning (at CIRS, for a

> > STARband), and returned home this evening. A long, tiring journey,

> > but I am feeling that we are doing the right thing. Because Zia is

> > older, the orthotist thinks that our regular appointments will only

> > need to be every 6 weeks or so, though there will initially be more

> > frequent visits to get things going.

> >

> > One especially good thing that came out of the appointment is the

> > fact that the orthotist feels that she saw some remaining evidence of

> > torticollis. Zia was never diagnosed with tort, though we did do PT/

> > CST when she was 7 - 9 months, which I feel helped. It looks like I

> > will pursue that again . . .

> >

> > We ordered a pink helmet, so now I am thinking about decorating with

> > her name and other details. I know there's been a lot about that, so

> > I will check the archives.

> >

> > Thank you to those of you who responded to my earlier posts. I am

> > sorry not to have replied individually, but things have been

> > especially busy/hectic recently.

> >

> > Amy, Chico

> > Zia (20 months, mild plagio, mild/moderate brachy)

> > STARband soon

> >

>

[Guest guest]

,

Thanks for your post. I totally agree that the more the child's personality

shows up over time the easier it is not to obsess. I am actually way better

than I used to be. Part of it is that there is no longer the uncertainty of

whether I might be able to get someone to band my son...now he is 27 months and

it's too late for that.

I do think it could be helpful for someone else to hear about how mothers can

end up feeling when they don't trust their instincts early on and instead listen

to all the good-intentioned other parents, grandparents, and so on who are

against banding. That is why I occasionally post in response to those on the

fence.

My son with the mild brachy, (my second too) is also way ahead of the

curve developmentally. So, to anyone worried about it, at least based on a

couple of anecdotes here Starbands do not damage the brain!

Thanks again, and I'm glad you and are doing so well!

> > >

> > > I posted recently about my daughter Zia (20+ months) and our decision

> > > to move forward with banding, despite her (advanced ;-)) age. We made

> > > the 3.5-hour trek to Oakland, CA (from Chico, where we live),

> > > yesterday, had our appointment this morning (at CIRS, for a

> > > STARband), and returned home this evening. A long, tiring journey,

> > > but I am feeling that we are doing the right thing. Because Zia is

> > > older, the orthotist thinks that our regular appointments will only

> > > need to be every 6 weeks or so, though there will initially be more

> > > frequent visits to get things going.

> > >

> > > One especially good thing that came out of the appointment is the

> > > fact that the orthotist feels that she saw some remaining evidence of

> > > torticollis. Zia was never diagnosed with tort, though we did do PT/

> > > CST when she was 7 - 9 months, which I feel helped. It looks like I

> > > will pursue that again . . .

> > >

> > > We ordered a pink helmet, so now I am thinking about decorating with

> > > her name and other details. I know there's been a lot about that, so

> > > I will check the archives.

> > >

> > > Thank you to those of you who responded to my earlier posts. I am

> > > sorry not to have replied individually, but things have been

> > > especially busy/hectic recently.

> > >

> > > Amy, Chico

> > > Zia (20 months, mild plagio, mild/moderate brachy)

> > > STARband soon

> > >

> >

>