CHARGE and MOEBIUS Syndrome ??

[Guest guest]

Hi,

we have here in Germany a typical CHARGE boy. His genetic test was

positiv.

After his has a very strong fazialesparese (only one side)the doctors

say that he might also has the MOEBIUS Syndrome.

Is it possible to have 2 Syndromes ? Is it possible to have 2 damaged

genes ?

Thanks for your answers

+ Jonas (CHARGE) 2 years

from Germany

[Guest guest]

yes it is possible ive never heard of this other syndrome thogh but there r

some otherzs that chargers can have

>

> Hi,

> we have here in Germany a typical CHARGE boy. His genetic test was

> positiv.

> After his has a very strong fazialesparese (only one side)the doctors

> say that he might also has the MOEBIUS Syndrome.

>

> Is it possible to have 2 Syndromes ? Is it possible to have 2 damaged

> genes ?

>

> Thanks for your answers

>

> + Jonas (CHARGE) 2 years

> from Germany

>

>

>

[Guest guest]

I think this is how meg explained it for this combination. All the

characteristics of Moebius is part of charge and since he was possitive for

charge then its likely the similarities of the two make it look like the

other but it is most likely just charge.

Well Meg probably will say it clearer as its early morning on a holiday day

and I havnt had breakfast.

Chantelle

--

My spelling's kinda wobbly. It's good spelling but the letters wobble and

end up in the wrong places. - Winnie the Pooh

My Blog Space: http://neutralufo.blogspot.com/

[Guest guest]

The main thing with Moebius is the facial palsy. Thats part of charge so its

possible to have another gean doing stuff but its just as likely that CHARGE

is causing the symptoms that are similar to charge. Facial palsy is a big

part of CHARGE as well.

Chantelle

--

My spelling's kinda wobbly. It's good spelling but the letters wobble and

end up in the wrong places. - Winnie the Pooh

My Blog Space: http://neutralufo.blogspot.com/

[Guest guest]

ah now u explaine dthat i c it yes it si a big paret of charge its like one

of the main features meg r u out there to brng this topic out more LOL

>

> The main thing with Moebius is the facial palsy. Thats part of charge so

> its

> possible to have another gean doing stuff but its just as likely that

> CHARGE

> is causing the symptoms that are similar to charge. Facial palsy is a big

> part of CHARGE as well.

>

> Chantelle

>

> --

> My spelling's kinda wobbly. It's good spelling but the letters wobble and

> end up in the wrong places. - Winnie the Pooh

>

> My Blog Space: http://neutralufo.blogspot.com/

>

>

[Guest guest]

, I don't think he would have both as Facial palsy is also a

characteristic of CHARGE. Has he had the genetic testing for the CHD7

mutation for CHARGE?

>

> Hi,

> we have here in Germany a typical CHARGE boy. His genetic test was

> positiv.

> After his has a very strong fazialesparese (only one side)the doctors

> say that he might also has the MOEBIUS Syndrome.

>

> Is it possible to have 2 Syndromes ? Is it possible to have 2 damaged

> genes ?

>

> Thanks for your answers

>

> + Jonas (CHARGE) 2 years

> from Germany

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

,

yes he had the genetic testing for the CHD7 - and it was positiv.

So that he is definitely a CHARGER.

But the eye specialist who also saw the Facial palsy thought that

it could be a mix between CHARGE and !!! MOEBIUS - we are confused !

Is it possible to have 2 different genetic abnormality´s ?

Love

+ Jonas (2)

>

> , I don't think he would have both as Facial palsy is also a

> characteristic of CHARGE. Has he had the genetic testing for the

CHD7

> mutation for CHARGE?

>

>

>

[Guest guest]

, I would ask them why they feel it could be a mix; if it's just

because of the cranial nerve anomalies, they are just as prevalent in CHARGE

and can certainly be explained within the realm of a positive CHARGE

diagnosis. Are there any other " red flags " for Moebius syndrome that aren't

there in CHARGE? How up to date are the docs with the info on CHARGE?

>

> ,

>

> yes he had the genetic testing for the CHD7 - and it was positiv.

> So that he is definitely a CHARGER.

> But the eye specialist who also saw the Facial palsy thought that

> it could be a mix between CHARGE and !!! MOEBIUS - we are confused !

>

> Is it possible to have 2 different genetic abnormality´s ?

>

> Love

> + Jonas (2)

>

>

> >

> > , I don't think he would have both as Facial palsy is also a

> > characteristic of CHARGE. Has he had the genetic testing for the

> CHD7

> > mutation for CHARGE?

> >

> >

> >

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

,

I have forwarded your other message and this one to Meg Hefner. I'm sure

she will answer you very soon. I usually do this when someone asks

specifically for Meg's help or I think she is the person who can give

the best explanation. She gets messages on Digest and may scan messages

and miss ones I know she would want to see.

n

gina15375 wrote:

>

> ,

>

> yes he had the genetic testing for the CHD7 - and it was positiv.

> So that he is definitely a CHARGER.

> But the eye specialist who also saw the Facial palsy thought that

> it could be a mix between CHARGE and !!! MOEBIUS - we are confused !

>

> Is it possible to have 2 different genetic abnormality´s ?

>

> Love

> + Jonas (2)

>

>

> >

> > , I don't think he would have both as Facial palsy is also a

> > characteristic of CHARGE. Has he had the genetic testing for the

> CHD7

> > mutation for CHARGE?

> >

> >

> >

>

>

> ------------------------------------------------------------------------

>

> No virus found in this incoming message.

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>

--

n A Norbury, Executive Director

CHARGE Syndrome Foundation Inc

409 Vandiver Dr Ste 5-104

Columbia MO 65202-1563

voice/fax; families

email: marion@...

[Guest guest]

,

Moebius syndrome usually refers to children with more than

one cranial nerve abnormality, but with no other problems.

Children with CHARGE very often have cranial nerve

abnormalities in additon to many other problems. So in your

son's case, he does not have two syndromes. He has CHARGE

syndrome. One feature of his CHARGE syndrome is cranial

nerve involvement. I hope that answers your question.

Meg

> ,

> I have forwarded your other message and this one to Meg

> Hefner. I'm sure she will answer you very soon. I usually

> do this when someone asks specifically for Meg's help or

> I think she is the person who can give the best

> explanation. She gets messages on Digest and may scan

> messages and miss ones I know she would want to see.

> n

>

> gina15375 wrote:

> >

> > ,

> >

> > yes he had the genetic testing for the CHD7 - and it was

> > positiv. So that he is definitely a CHARGER.

> > But the eye specialist who also saw the Facial palsy

> > thought that it could be a mix between CHARGE and !!!

> MOEBIUS - we are confused ! >

> > Is it possible to have 2 different genetic

abnormality´s

> ? >

> > Love

> > + Jonas (2)

> >

> > >

> > > , I don't think he would have both as Facial

> > > palsy is also a characteristic of CHARGE. Has he had

> > the genetic testing for the CHD7

> > > mutation for CHARGE?

> > >

> > >

> > >

> >

> >

> >

> ----------------------------------------------------------

> -------------- >

> > No virus found in this incoming message.

> > Checked by AVG Free Edition.

> > Version: 7.1.407 / Virus Database: 268.13.1/466 -

> > Release Date: 10/7/2006

>

> --

> n A Norbury, Executive Director

> CHARGE Syndrome Foundation Inc

> 409 Vandiver Dr Ste 5-104

> Columbia MO 65202-1563

> voice/fax; families

> email: marion@...

>

>

Meg Hefner, M.S.

Genetic Counselor

St. Louis, MO

hefnerma@... meg@...

[Guest guest]

Meg,

thanks for your answer - that is what we wanted to know.

> > >

> > >

[Guest guest]

,

our docs here are not very up to date with charge. In that special

case the parents didn´t know about CHARGE for 8 years. This boy is

now 8 years old and has all the typical CHARGE things - but nobody

saw it. terrible for the whole family

> > >

> > > , I don't think he would have both as Facial palsy is

also a

> > > characteristic of CHARGE. Has he had the genetic testing for

the

> > CHD7

> > > mutation for CHARGE?

> > >

> > >

> > >

> >

> >

> >

>

>

>

> --

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>