Re: facial palsy - facial nerve

[Guest guest]

Dear -

Thank you so much for your reply. Though your reply doesn't indicate I may have

confused you, reading my post I found myself confusing. The baby boy in

question is not but a darling boy at Children's Hospital here in Los

Angeles. I happened to be visiting when the Neurologist, in all her

diagnostician and clinician charm imparted the information, peppered with " we'll

have to follow this up.... we're in no hurry to get him out of here....of course

we don't know if he'll ever (fill in the blank).... "

The MRI's show this baby has absent facial nerves on one side. The doctor did

not refer to them as cranial nerves, but rather " facial nerves on one side are

absent. " Right now both sides of his face are equally relaxed and appear mostly

to be symmetrical. Asymmetry in expression is noticed in large expressions -

such as crying or yawning.

The most wonderful thing is your re-imparting of Meg's wisdom. The parents have

been hearing plenty of " we don't know if he'll ever walk " and stuff like that.

Why must these things be said so dour and stern? As though not knowing was as

good as it never happening? Really. In the NICU the logic of a new sense of

wholeness, the wisdom that physical capacity has little to do with actual value

and meaning, and the tenderness of exploring a world in which things happen a

little differently but happen wonderfully all the same would be kind....and more

honest (barring critical life sustaining issues of course).

My heart is with them-

thank you so much-

yuka

Re: facial palsy - facial nerve

Hi Yuka,

My understanding is that the facial nerve and the palsy are variable and can

change over time. I had emailed Meg asking about this, because I had always read

that the palsy should either stay stable or improve. She wrote back and said

yes, that's what they are supposed to do, but since when has anything with

CHARGE ever been the way it was supposed to be.

This is our experience with it: Evan went from not appearing to have a palsy

at all at birth, to at 2 weeks a unilateral palsy on the right side that

affected his eye (blinking, closing all the way), his midface (no tone around

the nostril), and his mouth (no smile or frown on that side). When he would get

angry and cry, the left side of his face would make an expression and he would

squint his eye--the right was expressionless with an open eye. We used to call

that look " the eye " ...as in, " Oh, Evan's upset and giving us " the eye " again. "

As he got older (around 4 months, I think), the palsy changed. He now has a

bilateral incomplete palsy--he can blink and close both his eyes reasonably well

(sometimes they remain a bit open if he's in a deep sleep). He smiles with the

right side of his mouth, and now the left doesn't move (the opposite of when he

was a young infant). He had a CT of the temporal bone done at 1 year of age. The

facial nerve was only commented on

on one side, and it was smaller than normal. I'm sure he has one on both

sides, since he has some function on both sides of his face. They just weren't

able to see it. Evan also had an MRI done at 4 months, and it was unremarkable.

(mom to Evan, 23 months)

Yuka Persico yuka@...> wrote:

Dear list-

does not seem to have any facial palsy, and when he was a neonate MRIs

were not the norm, so he does not have the extensive kind of diagnostic testing

infants do today.

I would greatly appreciate information to help fill in my gaps of

understanding from what I have heard the doctor say versus what I have

experienced in a five week old darling baby boy.

I heard the doctor say that on the first MRI the facial nerve was not present.

The second MRI either confirmed or disaffirmed that finding, so they will

default to the findings of the first MRI with regard to the facial nerve. The

doctor went on to explain that the nerves all on one side of the face would not

innervate - which is to mean the forehead, the eyebrow, the eyelid, the cheek

and the jaw. The face would be asymmetrical. It really sounded as though there

should be no movement at all.

Yet to watch this precious baby, certainly there is some asymmetry of

expression when yawning, and the darling smiles that one lives for are stronger

on one side or the other, but the eye on the affected side does close more often

than not, and there does not feel as though there is a complete absence of

innervations to one side of the infant's face.

Is this a case of the diagnostic and clinical do not paint the whole picture?

I would love to be able to provide a greater breadth and nuance of information

to the family on this.

Thank you so much in advance -

in love,

yuka