COLLEEN: Newbie here with facial asymmetry questions

[Guest guest]

Hi Colleen,

Say, I wanted to mention CST (crainial sacral therapy) to you. Our

therapist was describing torticollis and the effects it has. She

states that PT helps with some tightness, but does not fix the

problem. The problem stems in the spinal cord and can affect many

places, including the neck. It sounds to me like her whole side is

affected. CST works to loosen the spinal cord and the covering

around it, thus affecting many areas. My daughter's reflux is MUCH

less and her head is rounding out nicely. I am very glad for the

CST we have received. I know other moms here use it too. Praise

God our therapy has been free through the Infant Toddler program.

You should really look into the CST in my opinion. It might really

help! Just a thought!

- Boise, ID

> >

> > 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

> >

>