Re: Vagas Nerve!! help please

[Guest guest]

could it be dumping sydrome i get like taht with it but then if shes nto

refuluxing i donno its wierd lol more charge cr4azines

>

> Amelie moved to HDU last night but has had some brady's and very cold

> clammy wet sweaty skin and hair all over her body (no temp), everyone

> is baffled and batting ball, the cardio said they dont think its heart

> related, and the respiratory have asked the neuro to come a long a

> condition was mentioned sorry cant remember but the words vagas nerve

> were also included I remember this one from my physiology exam,

> something to do with sympathetic nerve signals.

>

> what do you think is going on, I thought she should be ready for home,

> chest great, sats 98 and looking well,

>

> just these odd sweats, she also goes very still lethargic and weepy

> when they come on and then 10 mins later she is back to herself????

>

> love les

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in

> the CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

I wish I had some answers for you and I really hope you get some

soon and things start to turn around. You really need something to

turn around for you soon and I know it will.

Hugs and prayers,

Crystal and Eva (11 month charger)

>

> Amelie moved to HDU last night but has had some brady's and very

cold

> clammy wet sweaty skin and hair all over her body (no temp),

everyone

> is baffled and batting ball, the cardio said they dont think its

heart

> related, and the respiratory have asked the neuro to come a long a

> condition was mentioned sorry cant remember but the words vagas

nerve

> were also included I remember this one from my physiology exam,

> something to do with sympathetic nerve signals.

>

> what do you think is going on, I thought she should be ready for

home,

> chest great, sats 98 and looking well,

>

> just these odd sweats, she also goes very still lethargic and

weepy

> when they come on and then 10 mins later she is back to herself????

>

> love les

>

[Guest guest]

Hi Lesley,

I'm sorry I haven't been reading Amelie's situation from the beginning,

but our prayers are with you.

My son's classmate had a vagus nerve stimulator for seizures.

Stimulation of the vagus nerve can cause bradycardia. Maybe what the

doctors were talking about was that the vagus nerve was being

overstimulated somehow?

I will go back and read your posts from the beginning, but just from

this post, Amelie's episodes sound a lot like something my son was

having when he was 6 weeks old. He had a strange cry, then he would

become cyanotic and bradycardic, O2 sats way down into the 40s within

seconds. They turned out to be seizures, even though his EEG was

normal.

Hugs,

[Guest guest]

Hi Lesley,

I'm sorry I haven't been reading Amelie's situation from the beginning,

but our prayers are with you.

My son's classmate had a vagus nerve stimulator for seizures.

Stimulation of the vagus nerve can cause bradycardia. Maybe what the

doctors were talking about was that the vagus nerve was being

overstimulated somehow?

I will go back and read your posts from the beginning, but just from

this post, Amelie's episodes sound a lot like something my son was

having when he was 6 weeks old. He had a strange cry, then he would

become cyanotic and bradycardic, O2 sats way down into the 40s within

seconds. They turned out to be seizures, even though his EEG was

normal.

Hugs,

[Guest guest]

Hi Lesley,

I'm sorry I haven't been reading Amelie's situation from the beginning,

but our prayers are with you.

My son's classmate had a vagus nerve stimulator for seizures.

Stimulation of the vagus nerve can cause bradycardia. Maybe what the

doctors were talking about was that the vagus nerve was being

overstimulated somehow?

I will go back and read your posts from the beginning, but just from

this post, Amelie's episodes sound a lot like something my son was

having when he was 6 weeks old. He had a strange cry, then he would

become cyanotic and bradycardic, O2 sats way down into the 40s within

seconds. They turned out to be seizures, even though his EEG was

normal.

Hugs,

[Guest guest]

Lesley,

This happens to Dylan. Slow heart rate, cold sweats, paleness, for

Dylan crying - retching - limpness cycles, then very sleepy

afterwards. For Dylan we call it abdominal migraine, but my instinct

tells me it IS related to the vagus nerve.

I am glad she is recovering from her other crud - I have been off list

for a week and had to get on to check how she was doing.

Kim

> Amelie moved to HDU last night but has had some brady's and very cold

> clammy wet sweaty skin and hair all over her body (no temp), everyone

> is baffled and batting ball, the cardio said they dont think its heart

> related, and the respiratory have asked the neuro to come a long a

> condition was mentioned sorry cant remember but the words vagas nerve

> were also included I remember this one from my physiology exam,

> something to do with sympathetic nerve signals.

>

> what do you think is going on, I thought she should be ready for home,

> chest great, sats 98 and looking well,

>

> just these odd sweats, she also goes very still lethargic and weepy

> when they come on and then 10 mins later she is back to herself????

>

> love les

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley,

This happens to Dylan. Slow heart rate, cold sweats, paleness, for

Dylan crying - retching - limpness cycles, then very sleepy

afterwards. For Dylan we call it abdominal migraine, but my instinct

tells me it IS related to the vagus nerve.

I am glad she is recovering from her other crud - I have been off list

for a week and had to get on to check how she was doing.

Kim

> Amelie moved to HDU last night but has had some brady's and very cold

> clammy wet sweaty skin and hair all over her body (no temp), everyone

> is baffled and batting ball, the cardio said they dont think its heart

> related, and the respiratory have asked the neuro to come a long a

> condition was mentioned sorry cant remember but the words vagas nerve

> were also included I remember this one from my physiology exam,

> something to do with sympathetic nerve signals.

>

> what do you think is going on, I thought she should be ready for home,

> chest great, sats 98 and looking well,

>

> just these odd sweats, she also goes very still lethargic and weepy

> when they come on and then 10 mins later she is back to herself????

>

> love les

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Lesley,

This happens to Dylan. Slow heart rate, cold sweats, paleness, for

Dylan crying - retching - limpness cycles, then very sleepy

afterwards. For Dylan we call it abdominal migraine, but my instinct

tells me it IS related to the vagus nerve.

I am glad she is recovering from her other crud - I have been off list

for a week and had to get on to check how she was doing.

Kim

> Amelie moved to HDU last night but has had some brady's and very cold

> clammy wet sweaty skin and hair all over her body (no temp), everyone

> is baffled and batting ball, the cardio said they dont think its heart

> related, and the respiratory have asked the neuro to come a long a

> condition was mentioned sorry cant remember but the words vagas nerve

> were also included I remember this one from my physiology exam,

> something to do with sympathetic nerve signals.

>

> what do you think is going on, I thought she should be ready for home,

> chest great, sats 98 and looking well,

>

> just these odd sweats, she also goes very still lethargic and weepy

> when they come on and then 10 mins later she is back to herself????

>

> love les

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

Kim, did the doctors think that it was not a seizure? From the sound of

it, especially the sleepiness afterward, it really sounds like seizures.

[Guest guest]

Kim, did the doctors think that it was not a seizure? From the sound of

it, especially the sleepiness afterward, it really sounds like seizures.

[Guest guest]

Kim, did the doctors think that it was not a seizure? From the sound of

it, especially the sleepiness afterward, it really sounds like seizures.

[Guest guest]

KIM,

Amelie also slept after each of these episodes, should I be doing

anything for these?

or just let them pass?

is she in pain do you think when they hapen?

and should I give paracetamol in case?

does Dylan still have these if so how frequent are they,?

We are going to review this when we have the big meeting, she is

well its only been two days but her sats are 98 which is never

usually achieved and so happy its great, i just cant help worry when

is this next bubble going to burst!!

cheers Les x

> > Amelie moved to HDU last night but has had some brady's and very

cold

> > clammy wet sweaty skin and hair all over her body (no temp),

everyone

> > is baffled and batting ball, the cardio said they dont think its

heart

> > related, and the respiratory have asked the neuro to come a long

a

> > condition was mentioned sorry cant remember but the words vagas

nerve

> > were also included I remember this one from my physiology exam,

> > something to do with sympathetic nerve signals.

> >

> > what do you think is going on, I thought she should be ready for

home,

> > chest great, sats 98 and looking well,

> >

> > just these odd sweats, she also goes very still lethargic and

weepy

> > when they come on and then 10 mins later she is back to

herself????

> >

> > love les

> >

> >

> >

> >

> >

> > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > http://www.imagestation.com/album/?id=2117043995

> >

> > Membership of this email support group does not constitute

membership in the CHARGE Syndrome Foundation; for information about

the CHARGE Syndrome

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

> > please contact marion@... or visit

> > the web site at http://www.chargesyndrome.org

> >

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at www.chargesyndrome.org or by calling 1-.

> >

[Guest guest]

Lesley,

For Dylan he responds to simple ibuprofen (I don't know what you call

it??) It is amazing how quickly he responds. Once we started with

the advil, the length of the episodes declined significantly, often

not even getting to the retching stage.

I do not understand the all of it - my best guess (mind you guess) is

that all the tiny stressors that occur over time, suddenly exceed

Dylan's threshold for managing it, then he has this vagal response or

migraine.

Dylan has needed advil twice since January, but fortunatley we have

not resorted to a take daily medication.

If Amelie can handle the respiratoy issues, she will certainly be able

to handle this curve ball too - although Mom having a nice temper

tantrum and screamin enough is enough to the univerese is allowed.

Kim

> KIM,

>

> Amelie also slept after each of these episodes, should I be doing

> anything for these?

> or just let them pass?

> is she in pain do you think when they hapen?

> and should I give paracetamol in case?

> does Dylan still have these if so how frequent are they,?

>

> We are going to review this when we have the big meeting, she is

> well its only been two days but her sats are 98 which is never

> usually achieved and so happy its great, i just cant help worry when

> is this next bubble going to burst!!

>

> cheers Les x

>

>

>

>

>

>

> > > Amelie moved to HDU last night but has had some brady's and very

> cold

> > > clammy wet sweaty skin and hair all over her body (no temp),

> everyone

> > > is baffled and batting ball, the cardio said they dont think its

> heart

> > > related, and the respiratory have asked the neuro to come a long

> a

> > > condition was mentioned sorry cant remember but the words vagas

> nerve

> > > were also included I remember this one from my physiology exam,

> > > something to do with sympathetic nerve signals.

> > >

> > > what do you think is going on, I thought she should be ready for

> home,

> > > chest great, sats 98 and looking well,

> > >

> > > just these odd sweats, she also goes very still lethargic and

> weepy

> > > when they come on and then 10 mins later she is back to

> herself????

> > >

> > > love les

> > >

> > >

> > >

> > >

> > >

> > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > http://www.imagestation.com/album/?id=2117043995

> > >

> > > Membership of this email support group does not constitute

> membership in the CHARGE Syndrome Foundation; for information about

> the CHARGE Syndrome

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

> > > please contact marion@... or visit

> > > the web site at http://www.chargesyndrome.org

> > >

> > > 8th International

> > > CHARGE Syndrome Conference, July, 2007. Information will be

> available at www.chargesyndrome.org or by calling 1-.

> > >

[Guest guest]

Lesley,

For Dylan he responds to simple ibuprofen (I don't know what you call

it??) It is amazing how quickly he responds. Once we started with

the advil, the length of the episodes declined significantly, often

not even getting to the retching stage.

I do not understand the all of it - my best guess (mind you guess) is

that all the tiny stressors that occur over time, suddenly exceed

Dylan's threshold for managing it, then he has this vagal response or

migraine.

Dylan has needed advil twice since January, but fortunatley we have

not resorted to a take daily medication.

If Amelie can handle the respiratoy issues, she will certainly be able

to handle this curve ball too - although Mom having a nice temper

tantrum and screamin enough is enough to the univerese is allowed.

Kim

> KIM,

>

> Amelie also slept after each of these episodes, should I be doing

> anything for these?

> or just let them pass?

> is she in pain do you think when they hapen?

> and should I give paracetamol in case?

> does Dylan still have these if so how frequent are they,?

>

> We are going to review this when we have the big meeting, she is

> well its only been two days but her sats are 98 which is never

> usually achieved and so happy its great, i just cant help worry when

> is this next bubble going to burst!!

>

> cheers Les x

>

>

>

>

>

>

> > > Amelie moved to HDU last night but has had some brady's and very

> cold

> > > clammy wet sweaty skin and hair all over her body (no temp),

> everyone

> > > is baffled and batting ball, the cardio said they dont think its

> heart

> > > related, and the respiratory have asked the neuro to come a long

> a

> > > condition was mentioned sorry cant remember but the words vagas

> nerve

> > > were also included I remember this one from my physiology exam,

> > > something to do with sympathetic nerve signals.

> > >

> > > what do you think is going on, I thought she should be ready for

> home,

> > > chest great, sats 98 and looking well,

> > >

> > > just these odd sweats, she also goes very still lethargic and

> weepy

> > > when they come on and then 10 mins later she is back to

> herself????

> > >

> > > love les

> > >

> > >

> > >

> > >

> > >

> > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > http://www.imagestation.com/album/?id=2117043995

> > >

> > > Membership of this email support group does not constitute

> membership in the CHARGE Syndrome Foundation; for information about

> the CHARGE Syndrome

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

> > > please contact marion@... or visit

> > > the web site at http://www.chargesyndrome.org

> > >

> > > 8th International

> > > CHARGE Syndrome Conference, July, 2007. Information will be

> available at www.chargesyndrome.org or by calling 1-.

> > >

[Guest guest]

Lesley,

For Dylan he responds to simple ibuprofen (I don't know what you call

it??) It is amazing how quickly he responds. Once we started with

the advil, the length of the episodes declined significantly, often

not even getting to the retching stage.

I do not understand the all of it - my best guess (mind you guess) is

that all the tiny stressors that occur over time, suddenly exceed

Dylan's threshold for managing it, then he has this vagal response or

migraine.

Dylan has needed advil twice since January, but fortunatley we have

not resorted to a take daily medication.

If Amelie can handle the respiratoy issues, she will certainly be able

to handle this curve ball too - although Mom having a nice temper

tantrum and screamin enough is enough to the univerese is allowed.

Kim

> KIM,

>

> Amelie also slept after each of these episodes, should I be doing

> anything for these?

> or just let them pass?

> is she in pain do you think when they hapen?

> and should I give paracetamol in case?

> does Dylan still have these if so how frequent are they,?

>

> We are going to review this when we have the big meeting, she is

> well its only been two days but her sats are 98 which is never

> usually achieved and so happy its great, i just cant help worry when

> is this next bubble going to burst!!

>

> cheers Les x

>

>

>

>

>

>

> > > Amelie moved to HDU last night but has had some brady's and very

> cold

> > > clammy wet sweaty skin and hair all over her body (no temp),

> everyone

> > > is baffled and batting ball, the cardio said they dont think its

> heart

> > > related, and the respiratory have asked the neuro to come a long

> a

> > > condition was mentioned sorry cant remember but the words vagas

> nerve

> > > were also included I remember this one from my physiology exam,

> > > something to do with sympathetic nerve signals.

> > >

> > > what do you think is going on, I thought she should be ready for

> home,

> > > chest great, sats 98 and looking well,

> > >

> > > just these odd sweats, she also goes very still lethargic and

> weepy

> > > when they come on and then 10 mins later she is back to

> herself????

> > >

> > > love les

> > >

> > >

> > >

> > >

> > >

> > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > http://www.imagestation.com/album/?id=2117043995

> > >

> > > Membership of this email support group does not constitute

> membership in the CHARGE Syndrome Foundation; for information about

> the CHARGE Syndrome

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

> > > please contact marion@... or visit

> > > the web site at http://www.chargesyndrome.org

> > >

> > > 8th International

> > > CHARGE Syndrome Conference, July, 2007. Information will be

> available at www.chargesyndrome.org or by calling 1-.

> > >

[Guest guest]

,

Dylan has had the spells I described below, plus spells that are

triggered by falling and hitting his forehead, and spells where he

suddenly seems to " fall asleep on his feet " . His neurologist does not

believe they are seizures, EEG does not show seizures (as if that

means much). Since I am not apt to put him on seizure meds at this

time, we leave it as " seizure-like " and have not pursued further EEGs.

Kim L

> Kim, did the doctors think that it was not a seizure? From the sound of

> it, especially the sleepiness afterward, it really sounds like seizures.

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

,

Dylan has had the spells I described below, plus spells that are

triggered by falling and hitting his forehead, and spells where he

suddenly seems to " fall asleep on his feet " . His neurologist does not

believe they are seizures, EEG does not show seizures (as if that

means much). Since I am not apt to put him on seizure meds at this

time, we leave it as " seizure-like " and have not pursued further EEGs.

Kim L

> Kim, did the doctors think that it was not a seizure? From the sound of

> it, especially the sleepiness afterward, it really sounds like seizures.

>

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; for information about the CHARGE Syndrome

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

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

www.chargesyndrome.org or by calling 1-.

>

[Guest guest]

I used to get those same symptoms as dillan, but they said it was likely

seizures. Hopefully I will get retested for the seizures.

Chantelle

>Kim, did the doctors think that it was not a >seizure? From the sound of

>it, especially the sleepiness afterward, it really >sounds like seizures.

>

>

[Guest guest]

Kim,

this does seem to be what hapened to amelie, because she had been

through a lot after being weened twice from the vent in 9 days and

everything else going on and then a day after coming of support she

had 36 hours of these episodes so it does

make sense about the vagus being over stimulated, and responding to

overload from the time she had in ICU, and when they gave her brufen

she did respond quickly but as soon as it was wearing off she

relapsed so they just gave it four hourly for te 36 hours until she

had no more bradys.

cheers les

hoogroups.com, " Kim Lauger " wrote:

>

> Lesley,

>

> For Dylan he responds to simple ibuprofen (I don't know what you

call

> it??) It is amazing how quickly he responds. Once we started with

> the advil, the length of the episodes declined significantly, often

> not even getting to the retching stage.

>

> I do not understand the all of it - my best guess (mind you guess)

is

> that all the tiny stressors that occur over time, suddenly exceed

> Dylan's threshold for managing it, then he has this vagal response

or

> migraine.

>

> Dylan has needed advil twice since January, but fortunatley we have

> not resorted to a take daily medication.

>

> If Amelie can handle the respiratoy issues, she will certainly be

able

> to handle this curve ball too - although Mom having a nice temper

> tantrum and screamin enough is enough to the univerese is allowed.

> >

> >

> >

> >

> >

> >

> > > > Amelie moved to HDU last night but has had some brady's and

very

> > cold

> > > > clammy wet sweaty skin and hair all over her body (no temp),

> > everyone

> > > > is baffled and batting ball, the cardio said they dont think

its

> > heart

> > > > related, and the respiratory have asked the neuro to come a

long

> > a

> > > > condition was mentioned sorry cant remember but the words

vagas

> > nerve

> > > > were also included I remember this one from my physiology

exam,

> > > > something to do with sympathetic nerve signals.

> > > >

> > > > what do you think is going on, I thought she should be ready

for

> > home,

> > > > chest great, sats 98 and looking well,

> > > >

> > > > just these odd sweats, she also goes very still lethargic and

> > weepy

> > > > when they come on and then 10 mins later she is back to

> > herself????

> > > >

> > > > love les

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > > http://www.imagestation.com/album/?id=2117043995

> > > >

> > > > Membership of this email support group does not constitute

> > membership in the CHARGE Syndrome Foundation; for information

about

> > the CHARGE Syndrome

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

> > > > please contact marion@ or visit

> > > > the web site at http://www.chargesyndrome.org

> > > >

> > > > 8th International

> > > > CHARGE Syndrome Conference, July, 2007. Information will be

> > available at www.chargesyndrome.org or by calling 1-.

> > > >

[Guest guest]

Kim,

this does seem to be what hapened to amelie, because she had been

through a lot after being weened twice from the vent in 9 days and

everything else going on and then a day after coming of support she

had 36 hours of these episodes so it does

make sense about the vagus being over stimulated, and responding to

overload from the time she had in ICU, and when they gave her brufen

she did respond quickly but as soon as it was wearing off she

relapsed so they just gave it four hourly for te 36 hours until she

had no more bradys.

cheers les

hoogroups.com, " Kim Lauger " wrote:

>

> Lesley,

>

> For Dylan he responds to simple ibuprofen (I don't know what you

call

> it??) It is amazing how quickly he responds. Once we started with

> the advil, the length of the episodes declined significantly, often

> not even getting to the retching stage.

>

> I do not understand the all of it - my best guess (mind you guess)

is

> that all the tiny stressors that occur over time, suddenly exceed

> Dylan's threshold for managing it, then he has this vagal response

or

> migraine.

>

> Dylan has needed advil twice since January, but fortunatley we have

> not resorted to a take daily medication.

>

> If Amelie can handle the respiratoy issues, she will certainly be

able

> to handle this curve ball too - although Mom having a nice temper

> tantrum and screamin enough is enough to the univerese is allowed.

> >

> >

> >

> >

> >

> >

> > > > Amelie moved to HDU last night but has had some brady's and

very

> > cold

> > > > clammy wet sweaty skin and hair all over her body (no temp),

> > everyone

> > > > is baffled and batting ball, the cardio said they dont think

its

> > heart

> > > > related, and the respiratory have asked the neuro to come a

long

> > a

> > > > condition was mentioned sorry cant remember but the words

vagas

> > nerve

> > > > were also included I remember this one from my physiology

exam,

> > > > something to do with sympathetic nerve signals.

> > > >

> > > > what do you think is going on, I thought she should be ready

for

> > home,

> > > > chest great, sats 98 and looking well,

> > > >

> > > > just these odd sweats, she also goes very still lethargic and

> > weepy

> > > > when they come on and then 10 mins later she is back to

> > herself????

> > > >

> > > > love les

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > > http://www.imagestation.com/album/?id=2117043995

> > > >

> > > > Membership of this email support group does not constitute

> > membership in the CHARGE Syndrome Foundation; for information

about

> > the CHARGE Syndrome

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

> > > > please contact marion@ or visit

> > > > the web site at http://www.chargesyndrome.org

> > > >

> > > > 8th International

> > > > CHARGE Syndrome Conference, July, 2007. Information will be

> > available at www.chargesyndrome.org or by calling 1-.

> > > >

[Guest guest]

Kim,

this does seem to be what hapened to amelie, because she had been

through a lot after being weened twice from the vent in 9 days and

everything else going on and then a day after coming of support she

had 36 hours of these episodes so it does

make sense about the vagus being over stimulated, and responding to

overload from the time she had in ICU, and when they gave her brufen

she did respond quickly but as soon as it was wearing off she

relapsed so they just gave it four hourly for te 36 hours until she

had no more bradys.

cheers les

hoogroups.com, " Kim Lauger " wrote:

>

> Lesley,

>

> For Dylan he responds to simple ibuprofen (I don't know what you

call

> it??) It is amazing how quickly he responds. Once we started with

> the advil, the length of the episodes declined significantly, often

> not even getting to the retching stage.

>

> I do not understand the all of it - my best guess (mind you guess)

is

> that all the tiny stressors that occur over time, suddenly exceed

> Dylan's threshold for managing it, then he has this vagal response

or

> migraine.

>

> Dylan has needed advil twice since January, but fortunatley we have

> not resorted to a take daily medication.

>

> If Amelie can handle the respiratoy issues, she will certainly be

able

> to handle this curve ball too - although Mom having a nice temper

> tantrum and screamin enough is enough to the univerese is allowed.

> >

> >

> >

> >

> >

> >

> > > > Amelie moved to HDU last night but has had some brady's and

very

> > cold

> > > > clammy wet sweaty skin and hair all over her body (no temp),

> > everyone

> > > > is baffled and batting ball, the cardio said they dont think

its

> > heart

> > > > related, and the respiratory have asked the neuro to come a

long

> > a

> > > > condition was mentioned sorry cant remember but the words

vagas

> > nerve

> > > > were also included I remember this one from my physiology

exam,

> > > > something to do with sympathetic nerve signals.

> > > >

> > > > what do you think is going on, I thought she should be ready

for

> > home,

> > > > chest great, sats 98 and looking well,

> > > >

> > > > just these odd sweats, she also goes very still lethargic and

> > weepy

> > > > when they come on and then 10 mins later she is back to

> > herself????

> > > >

> > > > love les

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > CHARGE SYNDROME LISTSERV PHOTO PAGE:

> > > > http://www.imagestation.com/album/?id=2117043995

> > > >

> > > > Membership of this email support group does not constitute

> > membership in the CHARGE Syndrome Foundation; for information

about

> > the CHARGE Syndrome

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

> > > > please contact marion@ or visit

> > > > the web site at http://www.chargesyndrome.org

> > > >

> > > > 8th International

> > > > CHARGE Syndrome Conference, July, 2007. Information will be

> > available at www.chargesyndrome.org or by calling 1-.

> > > >