Re: Newbie here with facial asymmetry questions

[Guest guest]

Colleen

I didn't see that you had already seen the facial doc too. I would

def keep pushing for some more tests to be done. Maybe your ped

knows of some other docs. I'm sorry you are having such a hard

time. Also see what CT sais.

Sandy Willow's mom

> >

> > 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

> >

>