Re: Facial palsy

October 3, 2003

DeAnn,

I'm not speaking personally, but of a close friend who has a child with

CHARGE. Her daughter did not appear to really have the facial palsy at

birth, but later on, it was more noticeable.

Weir

CHARGE Syndrome Canada, Inc.

* lisa.weir@...

(

http://www.chargesyndrome.ca

Facial Palsy

I have a question for those who have CHARGE children with the facial

palsy.

Whitney is 10 weeks old, and has never shown any sign of this until this

week.

Is this normal for it to manifest itself after 10 weeks? Any input is

appreciated. Thanks, DeAnn, Mother to Austin 8, 4, CHARGEr

Whitney 10

weeks

October 3, 2003

DeAnn,

One of the respiratory therapists that looked after Kennedy at birth used to

call her ol' popeye...

Weir

Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme

New Brunswick, Canada

Visit our family web site: http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada: http://www.chargesyndrome.ca

Re: Facial Palsy

Popeye is what she looks like also, thats funny, did it go away on its

own?

Or is it still there?>

October 4, 2003

DeAnn,

My son (8 years old now) showed signs of the facial palsy at birth, but it

became more pronounced as he aged. Now, it seems to have " settled in " as it will

be. It's almost like he grew into it (does that make sense?) But, looking

back at pictures, it was not as obvious at birth as it was at 10 weeks old,

that's for sure! That's when he started sleeping less and being awake more and

crying more - making expressions that made the palsy really stand out. The

nurses

in the NICU used to call him " Popeye! " (maybe not funny to some, but it was

true!) Hope this helps!

Rosie

October 4, 2003

Popeye is what she looks like also, thats funny, did it go away on its own?

Or is it still there?>

October 4, 2003

i didnt notice erikas so much at birth, i think it was as she started making

expressions that i notices. then i didnt see it much until i looked at her in

the mirror and then i t othered me more, i remeber wondering if the mirror

pronounced it more. her neurologist used to see her every 6 mos. when erika

was 5 she thought it was not as noticeable as it used to be. oral motor

exerciess helps. but when she cries or laughs you see it more. i say she has a

crooked smile.! i think its adorable! a friend of mine is an aspriing artists

and did a charcoal drawing of erika for me and it was fantastic, i cried, she

even showed erikas crooked smile! i think as they get older and the tone

increases it gets better and like naother mom said form this list, they grow

into

it.

i dont think i am offering any advice just another prospective.

good luck, and smile!

cathie, mom to erika 8 CHARGEr

October 4, 2003

No, it hasn't gone away. When he is sleeping or just watching tv or reading a

book or something, you don't really notice it. But it is more noticeable when

he is laughing or crying or being mad. One eye always pops wide open and the

other eye almost closes. He's beginning to recognize this difference now, too.

I recently asked him to smile for a picture, and he signed to me that he

couldn't smile because that side of his face didn't work. Poor little guy. I

just

smiled and told him that he was beautiful! I've been looking into getting it

fixed, but a surgeon we recently spoke to said that it would involve taking

nerve and muscle grafts. It would be a pretty extensive surgery. We are still

considering it, and I guess we're just waiting for him to be the one to initiate

it, though we have offered it as an option for whenever he's ready. I don't

want him to think that we think it's that big a deal.

October 4, 2003

No, it hasn't gone away. When he is sleeping or just watching tv or reading a

book or something, you don't really notice it. But it is more noticeable when

he is laughing or crying or being mad. One eye always pops wide open and the

other eye almost closes. He's beginning to recognize this difference now, too.

I recently asked him to smile for a picture, and he signed to me that he

couldn't smile because that side of his face didn't work. Poor little guy. I

just

smiled and told him that he was beautiful! I've been looking into getting it

fixed, but a surgeon we recently spoke to said that it would involve taking

nerve and muscle grafts. It would be a pretty extensive surgery. We are still

considering it

October 5, 2003

hi

curious as to which " specialty' surgeon would do thi sort of surgery?

plastics?

also wondering who diagnosis facial palsy? us? ;0) - which 'speciality' does

it fall under?

tia

jo

ds Ben 5-4-99, ds Josh 20-8-02 CHaRGE'r uclbcp

----- Original Message -----

I've been looking into getting it

> fixed, but a surgeon we recently spoke to said that it would involve

taking

> nerve and muscle grafts. It would be a pretty extensive surgery. We are

still

> considering it, and I guess we're just waiting for him to be the one to

initiate

> it, though we have offered it as an option for whenever he's ready. I

don't

> want him to think that we think it's that big a deal.

>

October 6, 2003

Hi DeAnn,

Our (now 3) did not really start showing facial palsy this early.

She left hospital at 3 months old and it was some time after she left that

we noticed. There are times when I don't notice it now except when I look

in the mirror with her or in photographs or only when I look closely at her,

particularly when she is smiling. As some parents here have said, perhaps

they just grow into it. She sometimes has a facial tic which we hear is

part of the same thing (anyone any thoughts on this?). We have had a

thought that her facial asymetry is getting more pronounced as she gets

older.

Flo

_________________________________________________________________

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October 6, 2003

My son's facial paralysis was " diagnosed " by his ENT doctor. As for the

surgery, we are living in the DC area now, and recently, town Hospital

referred us to someone who is supposed to be a MIRACULOUS plastic surgeon. He

specializes in craniofacial surgeries (involving mostly bone work). We went to

see

him, and were told that he couldn't do the surgery on my son, because it would

not involve a craniofacial specialist, but a micro-peripheral-nerve surgeon.

Someone whose expertise is in working with very tiny nerves throughout the

body. He called it " facial nerve re-animation. " Again, he indicated that this

would involve several surgeries, including nerve and muscle grafts from other

parts of his body, and that, even then, it would not be perfect.

Rosie (mother to Neal-8,CHARGE and -Marie, 3)

October 6, 2003

Flo,

My son also has a facial tic. We thought this more a family thing than

CHARGE, but perhaps not. He blinks his eye repeatedly and scrunches up the

non-paralyzed side of his face. He also has vocal cord paralysis (one of his

cords, not

both). Since he's non-verbal (deaf - and uses ASL only) this isn't that much

of a problem. But when he cries or when he's made (or just wants to get on my

nerves) he has this grunt that sounds just awful! Bad mother that I am, I

can't help but wonder what the neighbors must be thinking when they hear that!!

<

smile>

Rosie

October 7, 2003

Hi Rosie,

Thank you for the laugh re the bad mother/neighbours bit because I know

exactly what you mean, except it was in the street that I had the urge to

hide. We too were never sure exactly what the noise/grunt/loud horrible

throat clearing thing was about. Sometimes it appeared she was upset, other

times it seemed she was quite happy and was using it for attention.

Mercifully, she seems to have given it up now (or giving us a false sense of

security).

On the facial tic front, your description fits to a tee. It usually

makes an appearance when she is tired. One of the doctor's we see told us

it is a CHARGE thing related to cranial nerve defects. Now the subject has

come up and we are due to see him in January, it is worth discussing more.

Good luck with the grunts!!

Flo

>From: rjnparrish@...

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: Facial Palsy

>Date: Mon, 6 Oct 2003 07:24:30 EDT

>

>Flo,

>My son also has a facial tic. We thought this more a family thing than

>CHARGE, but perhaps not. He blinks his eye repeatedly and scrunches up the

>non-paralyzed side of his face. He also has vocal cord paralysis (one of

>his cords, not

>both). Since he's non-verbal (deaf - and uses ASL only) this isn't that

>much

>of a problem. But when he cries or when he's made (or just wants to get on

>my

>nerves) he has this grunt that sounds just awful! Bad mother that I am, I

>can't help but wonder what the neighbors must be thinking when they hear

>that!! <

>smile>

>Rosie

>

October 15, 2003

Oh boy does she ever charm!

Weir

Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme

New Brunswick, Canada

Visit our family web site: http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada: http://www.chargesyndrome.ca

Facial Palsy

I have a question for those who have CHARGE children with the facial

palsy.

Whitney is 10 weeks old, and has never shown any sign of this until this

week.

Is this normal for it to manifest itself after 10 weeks? Any input is

appreciated. Thanks, DeAnn, Mother to Austin 8, 4, CHARGEr

Whitney 10

weeks

October 15, 2003

My daughter was born with no facial palsy at all (we have an early

picture of her crying) and then it just showed up on her left side around 2

months. (and yes, we commented on how she looked like Popeye!) At around 4

months her right side began to slowly show signs of palsy until at one point

there was very little expression at all on either side.

When the right side began, we say a Neurologist and the tests began. They

were very concerned at first due to the progressive nature of the palsy.

Their concern was that the palsy would continue on to other systems after

her face and effect eating or breathing! (this didn't happen)

At some point around a year (I forget the exact timing) we took off of

Reglan (an anti-reflux med she was taking due her t-fistula repair) and soon

after she regained some of the movement in the right side of her face. We

are not sure how the Reglan fit into the whole picture, but it was

definitely doing something to make it worse.

is 21 months now and has some slight movement on the right side of her

face. Despite this, she still manages to charm just about everyone!

Christian Lobaugh

Husband to Ingrid, Father to (4) and (18 month charger)

Facial Palsy

I have a question for those who have CHARGE children with the facial palsy.

Whitney is 10 weeks old, and has never shown any sign of this until this

week.

Is this normal for it to manifest itself after 10 weeks? Any input is

appreciated. Thanks, DeAnn, Mother to Austin 8, 4, CHARGEr

Whitney 10

weeks

October 15, 2003

We looked into this a little bit, but we've put this on hold until our

daughter is older (she's not even 2 yet)

If you want to learn more, look into Mobius Syndrome(facial palsy is

apparently a major criteria for this syndrome), and look up a Dr. from

Toronto named Dr. Zucker. I believe I found a paper from him on the net

that discussed this surgery for Mobius Syndrome patients. We actually

corresponded a little via e-mail, but came to the conclusion that we needed

to re-visit the issue when gets older (4yrs +) If you have trouble

finding him, or info, let me know and I can dig it up again.

I'm not sure if there are any Charge kids who have had the facial

reanimation surgery or not. It seems as if I remember seeing a few posts

about people interested in it, but none about people having actually had it

done.

Interestingly, we've been seeing a neuromuscular specialist who's been

trying to really pinpoint what and where the problem is, and it has been

difficult for them to determine if the problem is muscular, nerve, or nerve

conduction. This really effects whether the reanimation surgery will work

or not. I'd be interested to hear if anyone with Charge has had this

surgery and how it turned out.

Christian Lobaugh

Husband to Ingrid, Father to (4) and (18 month charger)

Re: Facial Palsy

hi

curious as to which " specialty' surgeon would do thi sort of surgery?

plastics?

also wondering who diagnosis facial palsy? us? ;0) - which 'speciality' does

it fall under?

tia

jo

ds Ben 5-4-99, ds Josh 20-8-02 CHaRGE'r uclbcp

----- Original Message -----

I've been looking into getting it

> fixed, but a surgeon we recently spoke to said that it would involve

taking

> nerve and muscle grafts. It would be a pretty extensive surgery. We are

still

> considering it, and I guess we're just waiting for him to be the one to

initiate

> it, though we have offered it as an option for whenever he's ready. I

don't

> want him to think that we think it's that big a deal.

>

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Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

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7th International

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Information will be available at our website

www.chargesyndrome.org or by calling 1-.

October 16, 2003

I was wondering about my son ph. He is showing some facial abnormality

on his right side, and he has been slapping that side of his face a lot for

over a year. We are now looking at the possibility of trigeminal neuralgia. I

know cranial nerves are affected sometimes with CHARGE, and this affects the

5th cranial nerve. Has anyone else experienced their child having pain in the

side of their face and could this be a possibility? He is having a CT scan

(under sedation) on the 20th, and this will not show this problem. Has anyone

ever heard if an MRI would show anything since it focuses on soft tissue?

ph slaps his face extremely hard, and he does it on and off all day. He is

especially sensitive to his teeth being brushed anymore, and we have ruled out

any dental problems. This slapping has gotten severe and he has hit until his

mouth bleeds. I am working with our behavior specialist and he brought up the

idea of the trigeminal neuralgia. I would appreciate any thoughts on the

matter. I'm worried about further damage due to the slapping. Thanks.

(mom to 21 year old cHaRGE)

October 16, 2003

,

Please let me know how you make out. My Mark 20, hits his head and

face quite a bit and we are always wondering if there is a medical reason for

this. He will sometimes be fine and then just smack himself unbelievably

hard. It is quite upsetting.

October 16, 2003

Poor ph! Just as another thought about the slapping: have you had his ears

checked? We have had students who have had tremendous inner ear infections

and/or problems with mastoid and when they were dealt with, some or all of those

behaviors subsided.

pam

> ----------

> From: Crickmore7@...

> Reply To: CHARGE

> Sent: Thursday, October 16, 2003 10:34 AM

> To: CHARGE

> Subject: Re: Facial Palsy

>

> I was wondering about my son ph. He is showing some facial abnormality

> on his right side, and he has been slapping that side of his face a lot for

> over a year. We are now looking at the possibility of trigeminal neuralgia.

I

> know cranial nerves are affected sometimes with CHARGE, and this affects the

> 5th cranial nerve. Has anyone else experienced their child having pain in the

> side of their face and could this be a possibility? He is having a CT scan

> (under sedation) on the 20th, and this will not show this problem. Has anyone

> ever heard if an MRI would show anything since it focuses on soft tissue?

> ph slaps his face extremely hard, and he does it on and off all day. He

is

> especially sensitive to his teeth being brushed anymore, and we have ruled out

> any dental problems. This slapping has gotten severe and he has hit until his

> mouth bleeds. I am working with our behavior specialist and he brought up the

> idea of the trigeminal neuralgia. I would appreciate any thoughts on the

> matter. I'm worried about further damage due to the slapping. Thanks.

> (mom to 21 year old cHaRGE)

>

October 16, 2003

slaps her face when in ear pain. The most severe behavior (very

similar to what you describe) led to an initial diagnosis of infection in

the parotid gland, causing on-and-off swelling and pain which we couldn't

control. This went on for months until she was seen by a physician in

Boston; he didn't think the parotid was involved and ordered both a CAT

scan and a MRI. He found a mastoid cyst large enough to hold 4-5 grapes. As

soon as this was cleaned, the behavior which resulted from the pain ended.

Alas, it took many months of medical sleuthing to find the answer. If you're

in the Boston area, I'd be happy to find the dr's information for you.

Good luck.

Martha

October 18, 2003

Doesn't match any of my experience, although it does resonate with a lot of

the repetitive type behaviors that Chargers tend to have. I'd guess that

the other are correct in that it is just his reaction to something else like

an ear problem or maybe even teething.

Good luck on your search and let us know

Christian Lobaugh

Husband to Ingrid, Father to (4) and (18 month charger)

Re: Facial Palsy

I was wondering about my son ph. He is showing some facial abnormality

on his right side, and he has been slapping that side of his face a lot for

over a year. We are now looking at the possibility of trigeminal neuralgia.

I

know cranial nerves are affected sometimes with CHARGE, and this affects the

5th cranial nerve. Has anyone else experienced their child having pain in

the

side of their face and could this be a possibility? He is having a CT scan

(under sedation) on the 20th, and this will not show this problem. Has

anyone

ever heard if an MRI would show anything since it focuses on soft tissue?

ph slaps his face extremely hard, and he does it on and off all day. He

is

especially sensitive to his teeth being brushed anymore, and we have ruled

out

any dental problems. This slapping has gotten severe and he has hit until

his

mouth bleeds. I am working with our behavior specialist and he brought up

the

idea of the trigeminal neuralgia. I would appreciate any thoughts on the

matter. I'm worried about further damage due to the slapping. Thanks.

(mom to 21 year old cHaRGE)

October 22, 2003

Christian

Our daughter Hannah (who is 5) had bilateral facial reanimation

surgery in May this year at the Mount Vernon Hospital, Northwood

(near London). Within 2 months she had gained some movement on both

sides of her face, so we knew quite quickly that the nerve grafts

had been successful (it can take up to 6 months before you see any

sign of movement). Since then the amount of movement has increased

steadily, and although she does not yet have a full smile we are

hopeful that over time she will develop more skill and flexibility

in the way she uses her new facial muscles. She has recently

discovered that she can blow bubbles which is a new experience for

her!

We know of one other CHARGE child here in the UK who has recently

had facial reanimation surgery at Mount Vernon - although

he had a unilateral facial palsy so the procedure for him was

slightly different. Mobius Syndrome is definitely the most common

congenital cause of facial palsy amongst patients at Mount Vernon,

and the team there have an 80% success rate with the nerve

reanimation operation. We were told by Hannah's surgeon that there

are only three main centres where this specialist type of nerve

surgery is undertaken - Toronto (which has the highest profile),

Washington DC, and the Mount Vernon at Northwood where the original

pioneering work was undertaken in the 1970s. There are also

individual plastic surgeons elsewhere who do this type of facial

reanimation work (eg there is one at Birmingham, UK). We were also

told that children in the age group 4 to 7 have a better chance of a

good outcome from this procedure than older children.

Hope this helps

Rob

Father to Hannah (5 year old CHaRgEr), Alice & Tom, husband to Trina

Oxford, UK

> I'm not sure if there are any Charge kids who have had the facial

> reanimation surgery or not. It seems as if I remember seeing a

few posts

> about people interested in it, but none about people having

actually had it

> done.

>

I'd be interested to hear if anyone with Charge has had this

> surgery and how it turned out.

>

> Christian Lobaugh

> Husband to Ingrid, Father to (4) and (18 month charger)

>

October 23, 2003

Thanks Rob. It was thorough your original encouragement that we looked into

Dr. Zucker in Toronto in the first place. At the time you were just

considering surgery. I'm glad that it has gone so well for Hannah. I hope

that this surgery becomes a real option for more Charge kids. I think it is

a fairly new option for our community so it's good to see positive results.

Thanks again for sharing and keep in touch,