Re: facial palsy - facial nerve

June 12, 2007

also has facial palsy on left side. Her face is asymetrical.

She has no vision in the left eye, and the whole eye is smaller.

She can close the eye, but she'll rub it too much/too hard. Presumably

she can't feel what she's doing.

She also has left vocal cord paralysis (called a true paralysis-as it is not

the result of any intervention.)

I don't believe it's any worse, but the appearance of it is moreso now that

she is grown.

I'm really surprised to hear of a true palsy changing, and particularly

manifesting from one side

and then the other. What might be the explanation for that?

in Ma.

************************************** See what's free at http://www.aol.com.

June 12, 2007

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

June 12, 2007

,

's facial palsy is on the left and when he was little would do the same

thing.. we called him Popeye the Sailorman.. I used to threaten to dress him up

in a sailor outfit put a corncob pipe in his mouth and piss him off and take his

picture. The only thing that ahs improved with his palsy is his ability to

close his eye.

Casey

________________________________________________________________________________\

____

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today's economy) at Yahoo! Games.

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June 12, 2007

I never knew the operation for facial palsy wasnt so good. Ive wished it was

easier to smile. I can smile but smiling makes my face hurt alot and its

hard to smile for a camera (dispite what some ppl think i guess). I dont

think I will look into the mild facial palsy stuff. I have mild bilateral

facial palsy and thats fine.

Chantelle

>

> 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

>

--

I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me

June 12, 2007

Hi Yuka,

I know which family you are talking about (I've been corresponding off-list

with them), so I wasn't confused that it was !

,

I have no idea why the palsy would change--I just know that we have pictures

of him with his " Pop-eye " look and no movement of the mouth on the right, and

the right side is the " smile " side now. Most doctors I talk to don't have an

explanation for why it changed from strongly unilateral to bilateral and

affecting different branches of the facial nerve.

(mom to Evan, 23 months)

Yuka Persico yuka@...> wrote:

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

June 12, 2007

Dear Yuka,

I thought I would jump in and add a little bit to 's reply from our

experience, which was somewhat similar in that the facial paralysis changed over

time more than once.

When Kendra was born, there was no apparent facial assymetry or paralysis.

At one month she experienced a catastrophic episode of not-breathing for several

minutes due to a blocked trach tube. The neonatalogists noticed as she

recovered from the experience that she had facial nerve paralysis. She required

drops in her eyes to keep them lubricated at night as she could not close them

fully.

Sometime during her first year, the facial paralysis disappeared. She no longer

required the night drops and there was no visual assymetry.

Strangely, sometime around 14 or 15 months, it returned with vengeance. When

she cried, there was an absolute difference between sides of her face. The

doctor treated with prednisone briefly, but there was no relief.

Interestingly, the last time I saw the assymetry was just prior to the repair of

the double aoritc arch at 2 years of age. Amazingly, within days of the

successful surgery, the assymetry and facial paralysis was gone.

There has never been any concrete answer as to the reason for the surprising and

helpful turn of events. I have hypothesized that perhaps the double aortic

arch, while compressing the esophagus and the trachea, may have also affected

the facial nerve and may have became more apparent as she grew. Otherwise I

have wondered if the improved health she experienced as a result of the surgery

contributed to the great lessening of the condition. Perhaps there was a viral

or other illness component that aggraveated the appearance of the difficulty at

14 or 15 months.

Ultimately, when Kendra became able to eat orally, she experienced another

improvement to the facial nerves thought HANDLE Institute exercises. Following

the facial exercises she became able to chew more effectively and safely.

Kendra does not show remarkable facial assymetry or paralysis to this day at age

20.

So, I send my best to you for working so beautifully and with such support with

the family, and I send all best wishes and positive thoughts to them as well.