Re: COLLEEN: CST information

[Guest guest]

Glad you got the message. The therapist was here today for 30

minutes. She states that CST is usually a fix for the problem, not

just a treatment. Ya know how you kave to keep going back to the

chiropracter for adjustments? Well, this should take care of the

problem after a few/several treatments. (Depending on the extent of

the problem)

We have really seen good results from it, and I know a neighbor of

mine loves it, too. Her twin boys are also banded and have tort.

She did PT for a while with some results, but has been much more

satisfied after starting the CST.

I'm sure it can be expensive, but maybe insurance covers it, or you

could look into the Infant Toddler Program (may be called Early

Interventions) in your state.

Good luck to you and Peyton!

- Boise, ID

Sophie - 14 months - STARhelmet 3/15/06

> > >

> > > Hello everyone,

> > >

> > > I have twin daughters, who will be 9 months old next week

and

> one

> > of them was diagnosed with tort and plagio back in February

> > (although I had brought it up to her pediatrician in December-

> she

> > was born in Oct- and was told to do repositioning, etc).

> Starting in

> > Feb she started PT twice a week, until our insurance ran out

for

> it.

> > So now she receives OT for the tort via early intervention,

here

> in

> > our home once a week.

> > >

> > > I noticed an improvement right away in March after PT

> started..

> > her tort improved, but her head mis-shapeness... just seemed

to

> > change, not get any better. The other thing I noticed was

about

> 2

> > weeks after PT began, her left cheek seemed to hang down past

> her

> > jaw line, appearing larger than her right. This was really

> upsetting

> > to me.. yet NO ONE could tell me why. The best I got

was: " It's

> > might be from the torticollis " . Might be.. but none of the

> doctors

> > or PT's or OT's could explain it. Also, she had a droop to the

> > corner of the right side of her lip. Pediatrician ordered her

to

> see

> > a pediatric neuro because of it. He gawked at the fact that

she

> > couldn't roll over back to tummy and wasn't squealing yet. So

he

> > ordered an MRI.. MRI showed nothing wrong with her spinal

cord.

> I

> > asked him what about the facial problems (that she was sent to

> him

> > for), he casually remarked as he walked out of the room, " Oh

> that's

> > probably just from the torticollis.. everyone's face is

> > asymmetrical. " She's never had any x-rays.

> > >

> > > Her head shape did not get any better and her left cheek was

> > getting fuller/worse. So, finally after being on a wait list,

we

> > took her in May to a cranio facial clinic up at Dartmouth, he

> said

> > she did not qualify for a helmet/band per insurance company's

> > criteria. He said her plagio was mild and that 'no one is

> perfectly

> > symmetrical. "

> > >

> > > I'm enclosing some pictures of my daughter so you can see

what

> I'm

> > talking about.

> > >

> > >

> > > I have so many questions, that I hope some of you might be

> able to

> > help with:

> > >

> > > - Do any of you have a child with the same fullness/problem

> with

> > their cheek? My daughter's is now starting to bulge outward as

> well

> > as down (see pics). If so, did your child ever have any eating

> > problems? (my daughter has dysphagia, she silently aspirates

> when

> > she eats, and her epiglottic flap doesn't move at all)

> > >

> > > - Do you think the facial asymmetry is from the plagio or

> tort?

> > Everyone has been saying tort to me.. but since she has been

in

> > therapy for the tort, her facial asymmetry and head shape have

> just

> > gotten worse.. so I'm thinking it must be more from the plagio?

> > >

> > > - I think my daughter's plagio would be qualified as mild

> > (although I would call it moderate, because I probably think

it

> > looks worse than it is).. also her head is mis-shapen not up

top

> > (from a bird's eye view, it's not very noticeable) but rather

> down

> > low in the back and side's of her skull). Yet her ears have

now

> > become misaligned, one more forward than the other, and I

think

> I

> > can see that her right eye is smaller than her right (her tort

> makes

> > her tilt to her right.. her right cheek is the small one). Has

> > anyone had something similar, where your child's plagio is

mild,

> but

> > the facial asymmetries are quite noticeable? I thought I was

> just

> > being overly sensitive at first, until other people started

> > commenting on her cheek lately. So I don't think it's just me

> > anymore.

> > >

> > > - Does the facial asymmetry change from day to day? Some

days

> or

> > time of day my daughter's face looks much better than others.

> When

> > she's tired it is worse. But for instance, yesterday morning,

> she

> > woke up and her cheek was sagging and bulging so much. This

> drives

> > me crazy when I see a doctor, because it inevitably will be a

> good

> > time when they see her LOL. I'm bringing pictures next time so

> they

> > can see.

> > >

> > > - I called Cranial Tech in Connecticut today. And our

> pediatrician

> > actually agreed to write her a prescription for a DOCband when

I

> > called her today! So we go down Aug 2 for her Cranial Tech

eval.

> Has

> > anyone dealt with the Connecticut location before? I'm very

> worried

> > that they will say her plagio is too mild for a helmet, and we

> will

> > be left with nothing to do for her facial problems or head

shape

> > since insurance companies don't take into account facial

> asymmetry

> > measurements, just the head.

> > >

> > > - Is it too late at 9 months for significant results in

facial

> > symmetry and head shape to be seen if they determine she

should

> > receive a band? I just don't get how her plagio can be mild,

yet

> her

> > facial problem so significant.

> > >

> > > - What are the other measurement sites/locations on the head

> that

> > Cranial Tech will measure on her head? The stupid doctor up at

> > Dartmouth measured from her hairline above her right eye

> diagonally

> > across her head to the other side/top of her head (to the

> furthest

> > point). Then he did the same measurement from her hairline

above

> her

> > left eye across her head. And that was it. He said she

measured

> > perfectly even... then he admitted that obviously she wasn't,

> but

> > that was the only criteria insurance companies look at. We

have

> > AETNA insurance now, and Cranial Tech said they use several

> > measurement points.. does anyone know what these are? I'm

hoping

> > they are from the points on her head where she has the

flatness

> and

> > bulge on her skull.

> > >

> > > I've enclosed 3 pictures below; I'm interested to know what

> > other's think. The last two pics are from yesterday morning,

and

> I

> > think they show how her right eye is ever so slightly smaller

> than

> > her left. The last picture also illustrates how when we look

at

> her

> > straight on now, we can't see both of her ears equally (her

> clothes

> > are crooked in picture because they are stretched over a cast

on

> her

> > right arm, but she is looking and sitting straight on at the

> camera).

> > >

> > > Anyway, thank you for listening if you have made it his far.

I

> > apologize for it being so long. I feel so overwhelmed and I'm

so

> > worried about her.

> > >

> > > Thank you!

> > > Colleen

> > >

> > > Peyton (tort and plagio) and Haidyn 8.5 months

> > > Jensen 4 yrs

> > >

> >

>