Re: intermittent facial palsy?

March 6, 2006

Hi ,

Welcome to the listserv and congratulations on your baby girl! My daughter

has had unilateral facial palsy since birth, it has never been intermittent or

gone away at any time although it is less severe looking now than when she was a

baby. I have heard of Bell's Palsy which can come & go but I haven't heard

about it much here on the list. Most of the palsies we've discussed have just

been the regular CHARGE facial palsy so commonly seen (mostly unilateral, but

we've had some kids on here with bilateral). Sorry I can't be of more help here

with the intermittent episodes your daughter is experiences. Sounds like a

malfunction somewhere on the cranial nerve.

Weir

Visit the Weir family online: http://ca.geocities.com/weirfamilyrogers

Home: lisaweir@...

Work: lisa.weir@...

Phone:

March 7, 2006

-

I'm sorry I don't have an answer for you either. There is another mom whose

daughter has the Chiari malformation, I think -- ( -- isn't this what

Diane has?). But I haven't heard her talk about intermittent palsy.

Even if no one here can help you on this one, please stick around. We're

bound to be good for something along the way!

BTW-- where was the training you attended?

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

March 7, 2006

,

Welcome to the group!! My daughter also has a Facial paralysis and

to me that is the least of my worries for her right now. She is

almost 11 months old and when I was pregnant with her they told me

she would not live to be born and to have her here is such a

blessing anyway I can have her. She does have a little smile and I

know when she is happy and as more people are around her they learn

her smile also. I just got my 1st professional picture of her smiley

last month. I was so happy.

Hang in there hun we are here if you need anything!!

Crystal, mom to (10), (2), and Eva (10 month charger),

wife to Dan (for 9 years now)

Eva's site:

http://www.babysites.com/sites/crystalm1476/

Eva's group:

http://groups.msn.com/EvaNicholesCHARGESyndromepage

>

> Hi. I am brand new to this group. I have 16 month old girl with

> CHARGE, her name is Meagan. At about 11 months of age, she began

> having bouts of facial palsy. These events sent me to a

neurologist,

> who then sent me to a neurosurgeon. Meggy was diagnosed with a

Chiari

> malformation. Knowing this, and seing the facial palsies, the

> neurosurgeon recomended a decompression surgery. We did this on

> October 26th, 2005. Three weeks later, the facial palsies

returned.

> They tend to happen when Meagan is in the upright

position...whether

> it be in her high chair, or her bouncy seat. It happens in rare

> instances now, BUT IT STILL HAPPENS. My neurosurgeon is up in arms

and

> says we have to figure out what is causing it before the nerve

becomes

> damaged, and the palsy becomes permanent. This has me panicking

that

> my little girl's smile will forever be taken away. Anyhow, to make

a

> long story short, I went to a CHARGE meeting here in town, and was

> referred to this group. Some said they had heard of this. Is this

> normal???

>

> Thanks,

>

March 7, 2006

mic helle exactly wat i was thinking when i was readign it linda we need you

now what is the op di is having is that the same thing i think i tis oh well

im ellen as lisa said theres heaps of facil paralysis i dotn have ti but i

do knwo if you go to search the yahoo thing and archive and jsut search

chari malformation you will find heaps archived hugs ellen from aus

>

> ,

> Welcome to the group!! My daughter also has a Facial paralysis and

> to me that is the least of my worries for her right now. She is

> almost 11 months old and when I was pregnant with her they told me

> she would not live to be born and to have her here is such a

> blessing anyway I can have her. She does have a little smile and I

> know when she is happy and as more people are around her they learn

> her smile also. I just got my 1st professional picture of her smiley

> last month. I was so happy.

> Hang in there hun we are here if you need anything!!

>

> Crystal, mom to (10), (2), and Eva (10 month charger),

> wife to Dan (for 9 years now)

> Eva's site:

> http://www.babysites.com/sites/crystalm1476/

>

> Eva's group:

> http://groups.msn.com/EvaNicholesCHARGESyndromepage

>

> >

> > Hi. I am brand new to this group. I have 16 month old girl with

> > CHARGE, her name is Meagan. At about 11 months of age, she began

> > having bouts of facial palsy. These events sent me to a

> neurologist,

> > who then sent me to a neurosurgeon. Meggy was diagnosed with a

> Chiari

> > malformation. Knowing this, and seing the facial palsies, the

> > neurosurgeon recomended a decompression surgery. We did this on

> > October 26th, 2005. Three weeks later, the facial palsies

> returned.

> > They tend to happen when Meagan is in the upright

> position...whether

> > it be in her high chair, or her bouncy seat. It happens in rare

> > instances now, BUT IT STILL HAPPENS. My neurosurgeon is up in arms

> and

> > says we have to figure out what is causing it before the nerve

> becomes

> > damaged, and the palsy becomes permanent. This has me panicking

> that

> > my little girl's smile will forever be taken away. Anyhow, to make

> a

> > long story short, I went to a CHARGE meeting here in town, and was

> > referred to this group. Some said they had heard of this. Is this

> > normal???

> >

> > Thanks,

> >

>

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>

March 7, 2006

Hi ,

Welcome to the group.

My daughter, , was dx'd with chiari in Dec. 05. At the moment, I know

of only 2 other instances of chiari occuring with CHARGE. (not counting Megs

and Di) so incidence is rare, and considered not related.

has had unilateral facial palsy since birth. It was a constant

feature. (No MRI's back then). So, all her symptoms were attributed to CHARGE.

Ur doctor sounds very thorough, and will perhaps do another MRI (full spine)

to rule out causes.

Off the top of my non-professional head, I wonder if due to weak neck

muscles from surgery or from CHARGE hypotonia, she might be compressing from

posture, particularly as U say, it occurs when she's sitting upright. Another

potential for continued compression could be scar tissue. Would a soft collar

brace help while she continues to heal?

I looked back for info on infants with chiari. No one mentioned facial

palsy, although many chiari symptoms do fall into CHARGE profile as well.

Yahoo also has a chiari chat list. You cld ask them, or I can ask for you.

Juse let me know.

The doctor would know precisely which nerve(s) is involved and if her

particular surgical procedure would relate to that particular nerve. I gather

she

is not showing pain.

Do not fear for her smile, its a beautiful smile.

in Ma.

Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12

years now)

March 7, 2006

Hi ,

Welcome to the group.

My daughter, , was dx'd with chiari in Dec. 05. At the moment, I know

of only 2 other instances of chiari occuring with CHARGE. (not counting Megs

and Di) so incidence is rare, and considered not related.

has had unilateral facial palsy since birth. It was a constant

feature. (No MRI's back then). So, all her symptoms were attributed to CHARGE.

Ur doctor sounds very thorough, and will perhaps do another MRI (full spine)

to rule out causes.

Off the top of my non-professional head, I wonder if due to weak neck

muscles from surgery or from CHARGE hypotonia, she might be compressing from

posture, particularly as U say, it occurs when she's sitting upright. Another

potential for continued compression could be scar tissue. Would a soft collar

brace help while she continues to heal?

I looked back for info on infants with chiari. No one mentioned facial

palsy, although many chiari symptoms do fall into CHARGE profile as well.

Yahoo also has a chiari chat list. You cld ask them, or I can ask for you.

Juse let me know.

The doctor would know precisely which nerve(s) is involved and if her

particular surgical procedure would relate to that particular nerve. I gather

she

is not showing pain.

Do not fear for her smile, its a beautiful smile.

in Ma.

Mom to , 20 yrs old (CHARGE), 22 yrs. and partner to Alan (12

years now)

March 7, 2006

,

I am a genetic couselor with the CHARGE Syndrome Foundation. I have

heard of " changing " facial palsies from other parents. In some cases,

the facial palsy started during the first year, even though it was not

present at birth. In other cases, the facial palsy has improved over

time. I don't recall anyone else who has described it as

" intermittent, " but that doesn't surpirse me (very little surprises

me about CHARGE anymore).

As you have probably discovered, kids with CHARGE just are not

typical. Even their medical issues seem to often behave differently

from other children who don't have CHARGE.

One thing to be very sure your doctors know about is that it is common

for children with CHARGE to have ectopic facial nerves. That means

the path of the nerveis not in the usual place. Knowing where the

nerve runs (it goes thorugh the ear and down the cheek, but can vary

somewhat) is very important before any cranial facial surgery - if the

nerve is in an unexpected place, it can inadvertantly be damaged

during other surgeries (e.g. cochlear implant surgery)

I can't tell you if the nerve is somehow being damamged and might end

up permanantly impaired... it may just be the way Meggy is. It may

get better or get worse no matter what is done or not done. I'm

sending you a privvate email with contact information for a fmaily who

has had lots of experience checkeing out facial nerve stuff. Let us

all know what happens.

Meg

Meg Hefner MS

Genetic Counselor

St. Louis MO

meg@...

>

> Hi. I am brand new to this group. I have 16 month old girl with

> CHARGE, her name is Meagan. At about 11 months of age, she began

> having bouts of facial palsy. These events sent me to a neurologist,

> who then sent me to a neurosurgeon. Meggy was diagnosed with a Chiari

> malformation. Knowing this, and seing the facial palsies, the

> neurosurgeon recomended a decompression surgery. We did this on

> October 26th, 2005. Three weeks later, the facial palsies returned.

> They tend to happen when Meagan is in the upright position...whether

> it be in her high chair, or her bouncy seat. It happens in rare

> instances now, BUT IT STILL HAPPENS. My neurosurgeon is up in arms and

> says we have to figure out what is causing it before the nerve becomes

> damaged, and the palsy becomes permanent. This has me panicking that

> my little girl's smile will forever be taken away. Anyhow, to make a

> long story short, I went to a CHARGE meeting here in town, and was

> referred to this group. Some said they had heard of this. Is this

> normal???

>

> Thanks,

>

March 7, 2006