Re: Re: General Support! Help! to Debbie

[Guest guest]

Debbie -

Ack - no CT centers - I'm the mom from Kentwood! I

think we are going to have to go for a Star band -

there is just no way I can drive to Chitown that often

- I'd have to quit my job, and (unfortunately or

fortunately how you look at it) I have a great job and

if I quit my job - I can't afford the band! Ack! If

her plagio was worse I just might - but I feel like I

should give this a chance here first.

I called my ped's office this am - all of a sudden I

can't wait - i just feel like so much time has been

wasted - and I thought if I at least started making

some calls I'd feel better. He's going to call me

this pm with a referral.

Can you tell me the name of the Orthotist you went to

see when Abby was in the star band so that I can make

sure that I'm not seeing the same one? I really don't

want to go there after your experience.

Thanks for your reply. Since I don't know anyone who

has gone through this except you all - it really

helps.

& Vivian

--- debbieandabby <dj2kirby@...> wrote:

> Hi :

> Good to hear from you again!

> How is her torticollis improving with PT? I hope

> that's getting

> better!

> Isn't this just so frustrating? You sound a lot like

> I did when my

> daughter was an infant, one day I'd think her head

> wasn't that bad,

> the next it looked just horrible to me and I wanted

> to begin

> treatment NOW!

> It sounds like you've seen terrific improvement with

> repositioning &

> over time! 30-40% is a great number of improvement.

> For the time line you asked about, it generally

> takes an average of 4-

> 8 wks to even get into the specialist's office,

> their appt book is

> always backed up. If they tell you it will be that

> long, ask to be

> put on their cancellation list, so if they receive

> any cancellations

> before you appt., they can call you to get you in

> sooner.

> At that appt the specialist will evaluate Vivian &

> tell you if he

> feels she needs helmet/band treatment or not.

> Ultimately though, the

> decision should be up to you & your family.

> Don't feel bad for not doing anything sooner!!! It

> is a shame the

> medical community doesn't take the time to educate

> parents about

> plagio prevention and/or treatement .

> IF you do decide to band Vivian - even at an older

> age (over 1) she

> could still get correction in an active band

> (DOCband, STARband). My

> daughter didn't begin her DOCband til she was 11.5

> mos of age and we

> were still able to get 50-60% correction in one band

> of her severe

> plagio, I'm thrilled with that.

> Good luck Weds., I hope they'll refer you to a good

> specialist.

> Are you near any Cranial Tech locaitons? Check

> their website for

> their list www.cranialtech.com Most clinics offer

> free consultations

> & they would probably have a good specialist to

> refer you to.

> Let us know how it goes.

> Debbie Abby's mom DOCGrad

> MI

>

>

> > Hi everyone!

> >

> > I have just been kind of lurking about for a while

> - but I really

> > need some support now. My daughter Vivian will be

> 10 months old on

> > September 8th. She has both torticollis & plagio.

> She is in PT

> for

> > the tort. Anywhooo, that is not my isse here.

> >

> > I think I have been fooling myself into thinking

> that Viv's plagio

> is

> > mild - and I think the Dr's she has seen so far

> have lead me into

> > thinking that. I don't know if it was just

> wishful thinking or

> what

> > on my part that I didn't see it the way it really

> is. Maybe I have

> > just become the " head police " - I don't know. I

> have noticed that

> > her forehead has slight bossing, and that one

> eyelid looks

> different

> > than the other. Her plagio is on the back left.

> It is definately

> > better - I'd say 30-40% than it was before - but

> it just isn't the

> > shape it should be, and I don't see it getting any

> better than

> > before.

> >

> > So when she goes to PT this Wed, I am going to ask

> for a referral

> to

> > the craniofacial dr. It really bothers me that I

> have asked her

> ped

> > and it's like they think I'm crazy - do they not

> see her head?!

> > Anyway, at this point I am just so nervous. She's

> almost 10 months

> > and her head has only grown 1 1/8 inches in the

> past three months.

> > Is it too late? I feel like it's my fault for not

> doing anything

> > earlier, but it's just like no one will help you

> or say anything

> > about it! Her PT was the first to say anything

> about this at all.

> > If the cranio person thinks I am crazy too - then

> maybe I am. Her

> > head is definately not round, but it is definately

> not as bad as

> some

> > that I have seen. I wish I had some pictures to

> give you - but our

> > scanner is broken.

> >

> > Anyway, I feel much better after making the

> decision to pursue

> this -

> > but now the nerves have set in. Can anyone give

> me an idea of what

> > the general process/timeline is in getting this

> going? I would

> > appreciate any support!

> >

> > & Vivian (9mo's tort & plagio)

>

>

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