Problems associated with General Anaesthetics

[Guest guest]

, we have had several problems with anesthia. The first time we really

noticed it was when our daughter, had her open heart surgery. she was

only 10 lbs. she was quite fragile at the time.We did not know much about

CHARGE and what to ask etc, After the surgery, her blood pressure dropped and

she went into blood pressure arrest.. WE think after having eh charts

reviewed by a lawyer that something went wrong w/anesthia. Unfortunately, sine

was so compromised at the time, fault is difficult to blame. The lack of

blood flow to her extremities and brain have given her further problem than

CHARGE - But - She is a great kid, is a real fighter and has improved a lot

over the years.

We also noticed when she had a sedated ABR it took her forever to fall

asleep, however, once she did we could not wake her up to go home. it took

about

10 hours to wake her up, they told us then she was sensitive.

Ask all the quesitons you can, that is how you will learn

Good luck

CAthie, mom to erika 11 yr

[Guest guest]

As you may have read in the

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointment.html

my son had a poor result from his General Anaesthetic.

We are due to have an appointment with an Anaesthetist on Wednesday

(two days time) about another GA that he will have soon for another CT

scan and to have grommets inserted. We would like to be able to ask

all of the right questions when we have this appointment.

In reading through the CHARGE manual for parents for information on

anaesthesia we found the following references:

section III-11 (physician section)

- " Possible unexpected reaction to anesthesia. some children with

CHARGE are resistant to sedation, while others are slow to recover

forn anesthesia. Because of risks of anesthesia, it may be appropriate

to combine surgical procedures in these children. "

- " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

in surgical or anesthetic complications. The mortality rate in

children with this combination of features is high "

section III-14 (physician section)

- " Children with CHARGE may be resistant to chloral hydrate sedation "

- " Anesthetic risk is increased in children with airway involvement

such as choanal atresia, or laryngotracheomalacia (both common in

CHARGE). Children with choanal atresia and complex heart defects have

the highest rate of serious complications and/or poor outcome. "

(I wish that there was a section devoted to Anaesthesia so I didn't

have to read through the whole manual to find little bits of

information scattered through it.)

---

Are there any other concerns that I should bring up with the anaesthetist?

Has anyone else had an experience with anaesthesia that might help me

think about what I need to bring up?

Are there other referenced in the manual that I have missed that add

information?

thanks,

[Guest guest]

as you may of seen in my one of many coments to ur blog i have small airways

so anasetics can b hard for me to i have been good witht hem but earl on

think used to b hard it is soemthing to do with my airways being narow i had

sleep aponea still have a mild case of it but not so much now how r his

airways i asume they r quite small has he got coanal artresia i dotn

havethat but as you put it can b with soem chargers they can put a trach or

can use cpap to help open the airways i had the cpap this has helped me a

big deal hope this helps

>

> As you may have read in the

>

>

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointment.html

> my son had a poor result from his General Anaesthetic.

>

> We are due to have an appointment with an Anaesthetist on Wednesday

> (two days time) about another GA that he will have soon for another CT

> scan and to have grommets inserted. We would like to be able to ask

> all of the right questions when we have this appointment.

>

> In reading through the CHARGE manual for parents for information on

> anaesthesia we found the following references:

>

> section III-11 (physician section)

>

> - " Possible unexpected reaction to anesthesia. some children with

> CHARGE are resistant to sedation, while others are slow to recover

> forn anesthesia. Because of risks of anesthesia, it may be appropriate

> to combine surgical procedures in these children. "

>

> - " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

> in surgical or anesthetic complications. The mortality rate in

> children with this combination of features is high "

>

> section III-14 (physician section)

>

> - " Children with CHARGE may be resistant to chloral hydrate sedation "

>

> - " Anesthetic risk is increased in children with airway involvement

> such as choanal atresia, or laryngotracheomalacia (both common in

> CHARGE). Children with choanal atresia and complex heart defects have

> the highest rate of serious complications and/or poor outcome. "

>

> (I wish that there was a section devoted to Anaesthesia so I didn't

> have to read through the whole manual to find little bits of

> information scattered through it.)

>

> ---

>

> Are there any other concerns that I should bring up with the anaesthetist?

>

> Has anyone else had an experience with anaesthesia that might help me

> think about what I need to bring up?

>

> Are there other referenced in the manual that I have missed that add

> information?

>

> thanks,

>

>

>

>

[Guest guest]

Hello ,

Our daughter had a difficult experience following her first surgery at one week

of age. The surgery, to repair an H-type TE fistula, was relatively uneventful.

However, within a matter of hours, she had acute respiratory distress which

could not be resolved for a week when she had to undergo tracheostomy to allow

her an airway.

It is unclear whether there was an anesthetic reaction, or whether she perhaps

aspirated, or there was some kind of vocal chord injury as a result of the

initial surgery.

Two years later, a double aortic arch, vascular ring was identified which

explained some of the airway narrowing. The vascular ring wrapped around her

esophagus and trachea compromising both of them. Eating and breathing were both

difficult.

It it perhaps advantageous for physicians about to perform surgery to be aware

of possible risks or complicating factors. The double aortic arch created a

significant risk for our daughter but was not identified early.

It is important for any physician to be aware of possible airway complications

and to have emergency protocols and equipment immediately available.

Our daughter had numerous subsequent surgeries (approximately 30), which did not

result in the same airway restriction. Grommet or ear tube surgeries were

relatively short and were easy in her case.

I send best of luck,

wendy

Mom to Kendra, 20 years old with CHARGE, and Camille

Problems associated with General Anaesthetics

As you may have read in the

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointment.html

my son had a poor result from his General Anaesthetic.

We are due to have an appointment with an Anaesthetist on Wednesday

(two days time) about another GA that he will have soon for another CT

scan and to have grommets inserted. We would like to be able to ask

all of the right questions when we have this appointment.

In reading through the CHARGE manual for parents for information on

anaesthesia we found the following references:

section III-11 (physician section)

- " Possible unexpected reaction to anesthesia. some children with

CHARGE are resistant to sedation, while others are slow to recover

forn anesthesia. Because of risks of anesthesia, it may be appropriate

to combine surgical procedures in these children. "

- " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

in surgical or anesthetic complications. The mortality rate in

children with this combination of features is high "

section III-14 (physician section)

- " Children with CHARGE may be resistant to chloral hydrate sedation "

- " Anesthetic risk is increased in children with airway involvement

such as choanal atresia, or laryngotracheomalacia (both common in

CHARGE). Children with choanal atresia and complex heart defects have

the highest rate of serious complications and/or poor outcome. "

(I wish that there was a section devoted to Anaesthesia so I didn't

have to read through the whole manual to find little bits of

information scattered through it.)

---

Are there any other concerns that I should bring up with the anaesthetist?

Has anyone else had an experience with anaesthesia that might help me

think about what I need to bring up?

Are there other referenced in the manual that I have missed that add

information?

thanks,

[Guest guest]

How can I get a copy of the CHARGE manual for parents? I am a new member to the

group. My daughter Joyah has CHARGE she is 12 months and a twin(who does not

have CHARGE)

Bartlett wrote: As you may have

read in the

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointment.html

my son had a poor result from his General Anaesthetic.

We are due to have an appointment with an Anaesthetist on Wednesday

(two days time) about another GA that he will have soon for another CT

scan and to have grommets inserted. We would like to be able to ask

all of the right questions when we have this appointment.

In reading through the CHARGE manual for parents for information on

anaesthesia we found the following references:

section III-11 (physician section)

- " Possible unexpected reaction to anesthesia. some children with

CHARGE are resistant to sedation, while others are slow to recover

forn anesthesia. Because of risks of anesthesia, it may be appropriate

to combine surgical procedures in these children. "

- " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

in surgical or anesthetic complications. The mortality rate in

children with this combination of features is high "

section III-14 (physician section)

- " Children with CHARGE may be resistant to chloral hydrate sedation "

- " Anesthetic risk is increased in children with airway involvement

such as choanal atresia, or laryngotracheomalacia (both common in

CHARGE). Children with choanal atresia and complex heart defects have

the highest rate of serious complications and/or poor outcome. "

(I wish that there was a section devoted to Anaesthesia so I didn't

have to read through the whole manual to find little bits of

information scattered through it.)

---

Are there any other concerns that I should bring up with the anaesthetist?

Has anyone else had an experience with anaesthesia that might help me

think about what I need to bring up?

Are there other referenced in the manual that I have missed that add

information?

thanks,

Kylah

---------------------------------

Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

[Guest guest]

kylah go to www.chargesyndrome.org and downoad pdf manual for free hugs

ellen

>

> How can I get a copy of the CHARGE manual for parents? I am a new member

> to the group. My daughter Joyah has CHARGE she is 12 months and a twin(who

> does not have CHARGE)

>

> Bartlett <paul.bartlett@...<paul.bartlett%40ozemail.com.au>>

> wrote: As you may have read in the

>

>

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointment.html

> my son had a poor result from his General Anaesthetic.

>

> We are due to have an appointment with an Anaesthetist on Wednesday

> (two days time) about another GA that he will have soon for another CT

> scan and to have grommets inserted. We would like to be able to ask

> all of the right questions when we have this appointment.

>

> In reading through the CHARGE manual for parents for information on

> anaesthesia we found the following references:

>

> section III-11 (physician section)

>

> - " Possible unexpected reaction to anesthesia. some children with

> CHARGE are resistant to sedation, while others are slow to recover

> forn anesthesia. Because of risks of anesthesia, it may be appropriate

> to combine surgical procedures in these children. "

>

> - " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

> in surgical or anesthetic complications. The mortality rate in

> children with this combination of features is high "

>

> section III-14 (physician section)

>

> - " Children with CHARGE may be resistant to chloral hydrate sedation "

>

> - " Anesthetic risk is increased in children with airway involvement

> such as choanal atresia, or laryngotracheomalacia (both common in

> CHARGE). Children with choanal atresia and complex heart defects have

> the highest rate of serious complications and/or poor outcome. "

>

> (I wish that there was a section devoted to Anaesthesia so I didn't

> have to read through the whole manual to find little bits of

> information scattered through it.)

>

> ---

>

> Are there any other concerns that I should bring up with the anaesthetist?

>

> Has anyone else had an experience with anaesthesia that might help me

> think about what I need to bring up?

>

> Are there other referenced in the manual that I have missed that add

> information?

>

> thanks,

>

>

> Kylah

>

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

> Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

>

>

[Guest guest]

,

We had one bad anaesthetic scare with Kennedy, came right out of the blue

with drugs she'd had before under GA, so tell them not to suspect that a

drug he'd had previously will be safe for good with him. Also, INSIST on

doing multiple procedures/etc during a GA. It can be done - we had five

different departments coordinated in one O.R. time with Kennedy. I call all

her " people " - ophthamology, orthopedics, ENT, etc and let them know that

the O.R. date is such and such date and if they plan on doing anything with

her anytime in the near future, it needs to happen then.

Good luck with the CT, anaesthetic is scary for sure.

www.chargesyndrome.info

>

> As you may have read in the

>

>

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointment.html

> my son had a poor result from his General Anaesthetic.

>

> We are due to have an appointment with an Anaesthetist on Wednesday

> (two days time) about another GA that he will have soon for another CT

> scan and to have grommets inserted. We would like to be able to ask

> all of the right questions when we have this appointment.

>

> In reading through the CHARGE manual for parents for information on

> anaesthesia we found the following references:

>

> section III-11 (physician section)

>

> - " Possible unexpected reaction to anesthesia. some children with

> CHARGE are resistant to sedation, while others are slow to recover

> forn anesthesia. Because of risks of anesthesia, it may be appropriate

> to combine surgical procedures in these children. "

>

> - " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

> in surgical or anesthetic complications. The mortality rate in

> children with this combination of features is high "

>

> section III-14 (physician section)

>

> - " Children with CHARGE may be resistant to chloral hydrate sedation "

>

> - " Anesthetic risk is increased in children with airway involvement

> such as choanal atresia, or laryngotracheomalacia (both common in

> CHARGE). Children with choanal atresia and complex heart defects have

> the highest rate of serious complications and/or poor outcome. "

>

> (I wish that there was a section devoted to Anaesthesia so I didn't

> have to read through the whole manual to find little bits of

> information scattered through it.)

>

> ---

>

> Are there any other concerns that I should bring up with the anaesthetist?

>

> Has anyone else had an experience with anaesthesia that might help me

> think about what I need to bring up?

>

> Are there other referenced in the manual that I have missed that add

> information?

>

> thanks,

>

>

>

>

--

" 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]

Hi,

I suggest finding out exactly what drug they used- if this was a

reaction to the meds, what med was it exactly? My son had a

difficult time with morphine- he stopped breathing in the PACU coming

off of the morphine. They determined it was the morphine because

when they gave him Narcan, a med that specifically counteracts

morphine, he got much better. At subsequent surgeries, we reminded

them to find an alternative to Morphine for him...

also, I hear some anesthesia reactions can run in the family?!

Get as much info as you can during that anesthesia consult! We are

sure to ask lots of questions of our anesthesia docs now..

good luck,

Theresa

> As you may have read in the

> http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-

> appointment.html

> my son had a poor result from his General Anaesthetic.

>

> We are due to have an appointment with an Anaesthetist on Wednesday

> (two days time) about another GA that he will have soon for another CT

> scan and to have grommets inserted. We would like to be able to ask

> all of the right questions when we have this appointment.

>

> In reading through the CHARGE manual for parents for information on

> anaesthesia we found the following references:

>

> section III-11 (physician section)

>

> - " Possible unexpected reaction to anesthesia. some children with

> CHARGE are resistant to sedation, while others are slow to recover

> forn anesthesia. Because of risks of anesthesia, it may be appropriate

> to combine surgical procedures in these children. "

>

> - " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

> in surgical or anesthetic complications. The mortality rate in

> children with this combination of features is high "

>

> section III-14 (physician section)

>

> - " Children with CHARGE may be resistant to chloral hydrate sedation "

>

> - " Anesthetic risk is increased in children with airway involvement

> such as choanal atresia, or laryngotracheomalacia (both common in

> CHARGE). Children with choanal atresia and complex heart defects have

> the highest rate of serious complications and/or poor outcome. "

>

> (I wish that there was a section devoted to Anaesthesia so I didn't

> have to read through the whole manual to find little bits of

> information scattered through it.)

>

> ---

>

> Are there any other concerns that I should bring up with the

> anaesthetist?

>

> Has anyone else had an experience with anaesthesia that might help me

> think about what I need to bring up?

>

> Are there other referenced in the manual that I have missed that add

> information?

>

> thanks,

>

>

>

>

[Guest guest]

Hi ,

My son has not had any bad reactions to general anesthetic. That being said,

he ALWAYS has a separate anesthesia consult ahead of time, and the surgeon

always reserves a spot for him in the ICU post-op (even for procedures that are

normally done as outpatient). Evan has had a cleft palate repair aborted

because he started having respiratory difficulties after intubation (couldn't

keep sats about 90 on 100% oxygen)...he still had the other procedures that had

been scheduled that day completed. This was attributed to a respiratory

infection a couple weeks before surgery, and that this just wasn't enough time

for his airway to recover.

I would try to combine procedures if at all possible. Sometimes you just

can't do it (mouth or throat surgeries for example are considered " dirty " and

you can't combine them with surgeries on another part of the body). But things

like hearing tests (BAERs) or imaging studies (CT scan of the temporal bone is a

good one to ask for, if it hasn't been done yet) can be done with the same

general anesthetic. Just make sure to request these things pretty far in

advance, so that the additional time can be scheduled in.

(mom to Evan, 19 months; www.babysites.com/sites/skeybunny)

Bartlett wrote:

As you may have read in the

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointment.html

my son had a poor result from his General Anaesthetic.

We are due to have an appointment with an Anaesthetist on Wednesday

(two days time) about another GA that he will have soon for another CT

scan and to have grommets inserted. We would like to be able to ask

all of the right questions when we have this appointment.

In reading through the CHARGE manual for parents for information on

anaesthesia we found the following references:

section III-11 (physician section)

- " Possible unexpected reaction to anesthesia. some children with

CHARGE are resistant to sedation, while others are slow to recover

forn anesthesia. Because of risks of anesthesia, it may be appropriate

to combine surgical procedures in these children. "

- " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

in surgical or anesthetic complications. The mortality rate in

children with this combination of features is high "

section III-14 (physician section)

- " Children with CHARGE may be resistant to chloral hydrate sedation "

- " Anesthetic risk is increased in children with airway involvement

such as choanal atresia, or laryngotracheomalacia (both common in

CHARGE). Children with choanal atresia and complex heart defects have

the highest rate of serious complications and/or poor outcome. "

(I wish that there was a section devoted to Anaesthesia so I didn't

have to read through the whole manual to find little bits of

information scattered through it.)

---

Are there any other concerns that I should bring up with the anaesthetist?

Has anyone else had an experience with anaesthesia that might help me

think about what I need to bring up?

Are there other referenced in the manual that I have missed that add

information?

thanks,

---------------------------------

Get your own web address.

Have a HUGE year through Yahoo! Small Business.

[Guest guest]

Thankyou for everyones comments, the meeting with our anaesthetist

went very well and we are happy with all of the information covered in

the consultation (over an hours worth).

We are now letting the paediatrician, ENT and audiologist work out

exactly what procedures are worth doing during the next GA:

-Grommets

-Taking Blood

-Endoscope

-CT Scan

-Brainstem auditory response test

>

> As you may have read in the

>

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointment.html

> my son had a poor result from his General Anaesthetic.

>

> We are due to have an appointment with an Anaesthetist on Wednesday

> (two days time) about another GA that he will have soon for another CT

> scan and to have grommets inserted. We would like to be able to ask

> all of the right questions when we have this appointment.

>

> In reading through the CHARGE manual for parents for information on

> anaesthesia we found the following references:

>

> section III-11 (physician section)

>

> - " Possible unexpected reaction to anesthesia. some children with

> CHARGE are resistant to sedation, while others are slow to recover

> forn anesthesia. Because of risks of anesthesia, it may be appropriate

> to combine surgical procedures in these children. "

>

> - " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

> in surgical or anesthetic complications. The mortality rate in

> children with this combination of features is high "

>

> section III-14 (physician section)

>

> - " Children with CHARGE may be resistant to chloral hydrate sedation "

>

> - " Anesthetic risk is increased in children with airway involvement

> such as choanal atresia, or laryngotracheomalacia (both common in

> CHARGE). Children with choanal atresia and complex heart defects have

> the highest rate of serious complications and/or poor outcome. "

>

> (I wish that there was a section devoted to Anaesthesia so I didn't

> have to read through the whole manual to find little bits of

> information scattered through it.)

>

> ---

>

> Are there any other concerns that I should bring up with the

anaesthetist?

>

> Has anyone else had an experience with anaesthesia that might help me

> think about what I need to bring up?

>

> Are there other referenced in the manual that I have missed that add

> information?

>

> thanks,

>

>

[Guest guest]

good idea andthink up any other tests that he mite need to b asleep for and

do those to

>

> Thankyou for everyones comments, the meeting with our anaesthetist

> went very well and we are happy with all of the information covered in

> the consultation (over an hours worth).

>

> We are now letting the paediatrician, ENT and audiologist work out

> exactly what procedures are worth doing during the next GA:

>

> -Grommets

> -Taking Blood

> -Endoscope

> -CT Scan

> -Brainstem auditory response test

>

>

>

>

> >

> > As you may have read in the

> >

>

>

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointment.html

> > my son had a poor result from his General Anaesthetic.

> >

> > We are due to have an appointment with an Anaesthetist on Wednesday

> > (two days time) about another GA that he will have soon for another CT

> > scan and to have grommets inserted. We would like to be able to ask

> > all of the right questions when we have this appointment.

> >

> > In reading through the CHARGE manual for parents for information on

> > anaesthesia we found the following references:

> >

> > section III-11 (physician section)

> >

> > - " Possible unexpected reaction to anesthesia. some children with

> > CHARGE are resistant to sedation, while others are slow to recover

> > forn anesthesia. Because of risks of anesthesia, it may be appropriate

> > to combine surgical procedures in these children. "

> >

> > - " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

> > in surgical or anesthetic complications. The mortality rate in

> > children with this combination of features is high "

> >

> > section III-14 (physician section)

> >

> > - " Children with CHARGE may be resistant to chloral hydrate sedation "

> >

> > - " Anesthetic risk is increased in children with airway involvement

> > such as choanal atresia, or laryngotracheomalacia (both common in

> > CHARGE). Children with choanal atresia and complex heart defects have

> > the highest rate of serious complications and/or poor outcome. "

> >

> > (I wish that there was a section devoted to Anaesthesia so I didn't

> > have to read through the whole manual to find little bits of

> > information scattered through it.)

> >

> > ---

> >

> > Are there any other concerns that I should bring up with the

> anaesthetist?

> >

> > Has anyone else had an experience with anaesthesia that might help me

> > think about what I need to bring up?

> >

> > Are there other referenced in the manual that I have missed that add

> > information?

> >

> > thanks,

> >

> >

>

>

>

[Guest guest]

Amelie went for her last GA ( March 06) for a 10 minute scope of her

oesophagus, and came out of theatre in a very bad way, she was in 100% O2

and spent 11 days on a vent, for a tiny procedure. Weening her from the

sedation was horrendous and she appeared to need to be heavily cocktailed to

sedate, one kind on its own was never enough.

We need an MRI scan under GA, but the problem is no one appears too kean to

put her under!!!

Its a charge thing if you ask me!!

good luck Les x

>

> As you may have read in the

>

>

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointment.html

> my son had a poor result from his General Anaesthetic.

>

> We are due to have an appointment with an Anaesthetist on Wednesday

> (two days time) about another GA that he will have soon for another CT

> scan and to have grommets inserted. We would like to be able to ask

> all of the right questions when we have this appointment.

>

> In reading through the CHARGE manual for parents for information on

> anaesthesia we found the following references:

>

> section III-11 (physician section)

>

> - " Possible unexpected reaction to anesthesia. some children with

> CHARGE are resistant to sedation, while others are slow to recover

> forn anesthesia. Because of risks of anesthesia, it may be appropriate

> to combine surgical procedures in these children. "

>

> - " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

> in surgical or anesthetic complications. The mortality rate in

> children with this combination of features is high "

>

> section III-14 (physician section)

>

> - " Children with CHARGE may be resistant to chloral hydrate sedation "

>

> - " Anesthetic risk is increased in children with airway involvement

> such as choanal atresia, or laryngotracheomalacia (both common in

> CHARGE). Children with choanal atresia and complex heart defects have

> the highest rate of serious complications and/or poor outcome. "

>

> (I wish that there was a section devoted to Anaesthesia so I didn't

> have to read through the whole manual to find little bits of

> information scattered through it.)

>

> ---

>

> Are there any other concerns that I should bring up with the anaesthetist?

>

> Has anyone else had an experience with anaesthesia that might help me

> think about what I need to bring up?

>

> Are there other referenced in the manual that I have missed that add

> information?

>

> thanks,

>

>

>

>

[Guest guest]

Bryce has laryngo and tracheomalacia. The anesthesiologist always gives

him decadron before and after procedures, has orders with him when he

goes to the floor to administer decardron every 6 hours for the next 24

hours, and order for resimicepinephrine prn if he has problems. This

has him helped tremendously.

Just an fyi, when he was younger he was given chloral hydrate (despite

the fact we told them the concerns-now we tell them he is allergic to

it) and didn't wake up for 2 full days and nights...

________________________________

From: CHARGE [mailto:CHARGE ] On Behalf

Of Amelie Chan

Sent: Thursday, February 22, 2007 1:05 PM

To: CHARGE

Subject: Re: Problems associated with General Anaesthetics

Amelie went for her last GA ( March 06) for a 10 minute scope of her

oesophagus, and came out of theatre in a very bad way, she was in 100%

O2

and spent 11 days on a vent, for a tiny procedure. Weening her from the

sedation was horrendous and she appeared to need to be heavily

cocktailed to

sedate, one kind on its own was never enough.

We need an MRI scan under GA, but the problem is no one appears too kean

to

put her under!!!

Its a charge thing if you ask me!!

good luck Les x

On 19/02/07, Bartlett <paul.bartlett@...

<mailto:paul.bartlett%40ozemail.com.au> > wrote:

>

> As you may have read in the

>

>

http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appointm

ent.html

<http://raphaelincharge.blogspot.com/2007/02/20122006-geneticist-appoint

ment.html>

> my son had a poor result from his General Anaesthetic.

>

> We are due to have an appointment with an Anaesthetist on Wednesday

> (two days time) about another GA that he will have soon for another CT

> scan and to have grommets inserted. We would like to be able to ask

> all of the right questions when we have this appointment.

>

> In reading through the CHARGE manual for parents for information on

> anaesthesia we found the following references:

>

> section III-11 (physician section)

>

> - " Possible unexpected reaction to anesthesia. some children with

> CHARGE are resistant to sedation, while others are slow to recover

> forn anesthesia. Because of risks of anesthesia, it may be appropriate

> to combine surgical procedures in these children. "

>

> - " Lanyngomalacia or tracheomalacia is common in CHARGE and can result

> in surgical or anesthetic complications. The mortality rate in

> children with this combination of features is high "

>

> section III-14 (physician section)

>

> - " Children with CHARGE may be resistant to chloral hydrate sedation "

>

> - " Anesthetic risk is increased in children with airway involvement

> such as choanal atresia, or laryngotracheomalacia (both common in

> CHARGE). Children with choanal atresia and complex heart defects have

> the highest rate of serious complications and/or poor outcome. "

>

> (I wish that there was a section devoted to Anaesthesia so I didn't

> have to read through the whole manual to find little bits of

> information scattered through it.)

>

> ---

>

> Are there any other concerns that I should bring up with the

anaesthetist?

>

> Has anyone else had an experience with anaesthesia that might help me

> think about what I need to bring up?

>

> Are there other referenced in the manual that I have missed that add

> information?

>

> thanks,

>

>

>

>