Re: General Anaesthetics for a child...

[Guest guest]

I don't know how old your child is that is going to have the teeth removed, but

I would not let them use a general in the office. It you have had problems in

the past with general that would be indication enough for me. My son

(non-affected as far as we know, and 31yrs. old) had a great deal of dental work

done when he was just 4 yrs old and they used the nitros gas and he did quite

well. I think I would really discuss this at great length with your dentist and

maybe even print off the article by Dr. Cohen and take in for him to read ahead

of time. I don't feel you can be too careful when it comes to our kiddos.

Just my thoughts, for what they are worth,

Kathy, grandma to Audrey, 3 years

chris1gill@... wrote:

Oh do I have a problem My son is due to have eight teeth removed on

Monday, four adults, four babies... they were to be extracted in the office. I

just got off the phone with the office however & they will in fact be giving

him a general anaesthetic. This is in the doctor's office, not the hospital.

As background, I'm a mito mom that has had the disease actively since I was

24, not diagnosed til 32... I do extraordinarily poorly with general's... the

first one, at my son's age coincidentally, I just got profusely ill & was

admitted, because it too was on an outpatient basis....

What should I do? My first thought is to just say NO.... a twilight in the

office would be fine (I do fine with that myself), but a general? That's a very

bad idea I think.... but we don't know that our son has a genetic tendency

or not... am I just being an over cautious parent? I hope someone can advise

me here, because I'm really quite upset

TIA

Chris

[Guest guest]

Hi Kathy,

Thank you for the response.... so your son is 31? Has he ever had a

general anaesthetic? Our son is nine, I should have mentioned that.

The anaesthetic component to this does seem to be genetic as my

maternal grandmother also has had very severe reactions to

anaesthesia. Where can I find the article written by Dr. Cohen? I'm

really feeling that I need to cancel this appt. and have it done at

the hospital, or, perhaps, done in the office with a twilight

anaesthesia... I really see no reason for a general But maybe

that's the mother in me?

Thanks for the insight....

Chris

>

> I don't know how old your child is that is going to have the teeth

removed, but I would not let them use a general in the office. It

you have had problems in the past with general that would be

indication enough for me. My son (non-affected as far as we know,

and 31yrs. old) had a great deal of dental work done when he was just

4 yrs old and they used the nitros gas and he did quite well. I

think I would really discuss this at great length with your dentist

and maybe even print off the article by Dr. Cohen and take in for him

to read ahead of time. I don't feel you can be too careful when it

comes to our kiddos.

>

> Just my thoughts, for what they are worth,

> Kathy, grandma to Audrey, 3 years

> ]

[Guest guest]

Anesthesia article by Cohen, Shoffner, DeBoer

http://www.umdf.org http://www.umdf.org/>

Click on " library, " " recommended reading, " " Anesthesia and Mitochondrial

Cytopathies. " This is a PDF file that requires Adobe Acrobat to view. If

you can't access it, I have an electronic version that I can paste into

email.

B

_____

From: chris1gill

Sent: Thursday, January 27, 2005 9:46 AM

To:

Subject: Re: General Anaesthetics for a child...

Hi Kathy,

Thank you for the response.... so your son is 31? Has he ever had a

general anaesthetic? Our son is nine, I should have mentioned that.

The anaesthetic component to this does seem to be genetic as my

maternal grandmother also has had very severe reactions to

anaesthesia. Where can I find the article written by Dr. Cohen? I'm

really feeling that I need to cancel this appt. and have it done at

the hospital, or, perhaps, done in the office with a twilight

anaesthesia... I really see no reason for a general But maybe

that's the mother in me?

Thanks for the insight....

Chris

>

> I don't know how old your child is that is going to have the teeth

removed, but I would not let them use a general in the office. It

you have had problems in the past with general that would be

indication enough for me. My son (non-affected as far as we know,

and 31yrs. old) had a great deal of dental work done when he was just

4 yrs old and they used the nitros gas and he did quite well. I

think I would really discuss this at great length with your dentist

and maybe even print off the article by Dr. Cohen and take in for him

to read ahead of time. I don't feel you can be too careful when it

comes to our kiddos.

>

> Just my thoughts, for what they are worth,

> Kathy, grandma to Audrey, 3 years

> ]

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

_____

[Guest guest]

No, my son has never had a general but my daughter has and she has reacted

thesame way that I do, my mother and my grandmother did. Her blood pressure

bottoms out and she is very difficult to wake up. You can go to the UMDF site

and print the article that Dr. Cohen has written, unless someone on line has it

and can put it online for you. I used to have it but when I had computer

problems a while back I lost it. All I can say, is do what our mommy heart

tells you. You are your child's advocate. I feel it is alwyas best to error on

the side of caution.

Kathy, grandma to Audreyk, 3 years

chris1gill chris1gill@...> wrote:

Hi Kathy,

Thank you for the response.... so your son is 31? Has he ever had a

general anaesthetic? Our son is nine, I should have mentioned that.

The anaesthetic component to this does seem to be genetic as my

maternal grandmother also has had very severe reactions to

anaesthesia. Where can I find the article written by Dr. Cohen? I'm

really feeling that I need to cancel this appt. and have it done at

the hospital, or, perhaps, done in the office with a twilight

anaesthesia... I really see no reason for a general But maybe

that's the mother in me?

Thanks for the insight....

Chris

>

> I don't know how old your child is that is going to have the teeth

removed, but I would not let them use a general in the office. It

you have had problems in the past with general that would be

indication enough for me. My son (non-affected as far as we know,

and 31yrs. old) had a great deal of dental work done when he was just

4 yrs old and they used the nitros gas and he did quite well. I

think I would really discuss this at great length with your dentist

and maybe even print off the article by Dr. Cohen and take in for him

to read ahead of time. I don't feel you can be too careful when it

comes to our kiddos.

>

> Just my thoughts, for what they are worth,

> Kathy, grandma to Audrey, 3 years

> ]

Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Hi

Hold old is your son? Why do so many have to be extracted?

When my son had to have a tooth extracted (a baby one) he only had to have a

local anesthetic. Also, if your son is old enough to hold still, minimal

sedation should be possible and preferable.

Have you considered having only a few done at a time. I had all my wisdom teeth

extracted with local anesthesia only, and they were badly impacted. A regular

tooth should not be a problem to extract in such a manner.

Also, I would be suspisious of a dentist who would do a general anesthesia in

his office. Usually they send the patient to the hospital. This was true when

my children had their wisdom teeth removed. We elected to have twilight sleep

which the oral surgeon does at his office. (Note this was an oral surgeon and

not just a dentist). He has a surgery there complete with monitoring equipment

and resuscitation equipment. He said he would not do a general anesthesia at

the office but would only do it at the hospital. Hope this helps.

Lea

Oh do I have a problem My son is due to have eight teeth removed on

Monday, four adults, four babies... they were to be extracted in the office.

I

just got off the phone with the office however & they will in fact be giving

him a general anaesthetic. This is in the doctor's office, not the hospital.

As background, I'm a mito mom that has had the disease actively since I was

24, not diagnosed til 32... I do extraordinarily poorly with general's... the

first one, at my son's age coincidentally, I just got profusely ill & was

admitted, because it too was on an outpatient basis....

What should I do? My first thought is to just say NO.... a twilight in the

office would be fine (I do fine with that myself), but a general? That's a

very

bad idea I think.... but we don't know that our son has a genetic tendency

or not... am I just being an over cautious parent? I hope someone can advise

me here, because I'm really quite upset

TIA

Chris

[Guest guest]

Hi Kathy,

Oh this worries me more to hear... I am the same way, very difficult

to wake up, but now each time I have a general it gets worse, last

time I was hospitalized for three days with complications... My

mommy heart says this is very bad.... that we shouldn't do it, if

they can't do it with a twilight, then we need to be in a hospital

setting... Is your daughter active with mito? Or, is it just the

general that she reacts to so far? Mine all started with the

general's

Chris

>

> No, my son has never had a general but my daughter has and she has

reacted thesame way that I do, my mother and my grandmother did. Her

blood pressure bottoms out and she is very difficult to wake up. You

can go to the UMDF site and print the article that Dr. Cohen has

written, unless someone on line has it and can put it online for

you. I used to have it but when I had computer problems a while back

I lost it. All I can say, is do what our mommy heart tells you. You

are your child's advocate. I feel it is alwyas best to error on the

side of caution.

>

> Kathy, grandma to Audreyk, 3 years

> removed]

[Guest guest]

Hi Lea,

So many questions... Our son is nine, and I forgot, this is at an

oral surgeon's office. needs to have four adult teeth taken

out (sort of two in front top & bottom) because he has such an

extraordinarily small mouth that his teeth are coming in (and not

coming in) in all the wrong ways, there's no place for some of them

to even come in... add to that he has a terrible overbite that now

when he chews, his bottom teeth hit the top of his mouth, precisely

where all the nerves meet So they've got to be able to adjust his

bite as well... this poor kid needs a lot of work done They need

the adults out to make room for the other adults, they need the

babies out so they can finish the braces that they started so he can

chew.... poor kid

I agree with you though, the least amount of anaesthetic, the better.

I can see where they'd want to do this with sedation as eight is an

awful lot of teeth to take out I just feel awful to begin with &

now this... I do have a call in to the doctor to make him aware of my

situation, apparently my husband did not.... We have consulted with

our regular dentist on this whole plan as well, and he agrees on it,

the orthodontists office was the one to put the plan together &

apparently the oral surgeon agrees with the methods too It's just

so hard to now realize what they wanted to do was use a general

Sorry for the run on sentences, I'm still upset

Chris

>

> Hi

>

> Hold old is your son? Why do so many have to be extracted?

>

> When my son had to have a tooth extracted (a baby one) he only had

to have a local anesthetic. Also, if your son is old enough to hold

still, minimal sedation should be possible and preferable.

>

> Have you considered having only a few done at a time. I had all my

wisdom teeth extracted with local anesthesia only, and they were

badly impacted. A regular tooth should not be a problem to extract

in such a manner.

>

> Also, I would be suspisious of a dentist who would do a general

anesthesia in his office. Usually they send the patient to the

hospital. This was true when my children had their wisdom teeth

removed. We elected to have twilight sleep which the oral surgeon

does at his office. (Note this was an oral surgeon and not just a

dentist). He has a surgery there complete with monitoring equipment

and resuscitation equipment. He said he would not do a general

anesthesia at the office but would only do it at the hospital. Hope

this helps.

> Lea

>

>

[Guest guest]

My daughter, Amie has not been Dx with Mito, it is her daughter, Audrey, 3 years

that has mito. However, after talking to the genetics doctor, they feel many of

our family members along the maternal side have shown many " soft " signs, my

daughter and myself included. In the future I am looking at needing back

surgery (I am putting it off for as long as possible), anyway, when they do the

back surgery we are going to arrange for a muscle bx at that time. It

unfortunetly will be a frozen bx, but I guess that would be better than nothing

at this time. Audrey is very affected and has been pretty much since birth.

She is non-verbal, G-tube completely for nutrition, seizures, unable to sit,

walk, or roll over, delayed (but not sure to what extent because she is

no-verbal), unable to take the mito cocktail due to horrendous increase in her

seizures when we tried putting her on it and she has out lived any expectations

by the specialist. Dr. Cohen told them two years ago this month to

take her home and enjoy her for the time they had because he didn't think she

would see 2!!!! The doctors don't always know.

As everyone on this list knows, she is the sunshine of my day and the stars in

my sky at night.

Good luck with the teeth removal. Let us know how things go.

Kathy, grandma to Audrey, 3 years

chris1gill chris1gill@...> wrote:

Hi Kathy,

Oh this worries me more to hear... I am the same way, very difficult

to wake up, but now each time I have a general it gets worse, last

time I was hospitalized for three days with complications... My

mommy heart says this is very bad.... that we shouldn't do it, if

they can't do it with a twilight, then we need to be in a hospital

setting... Is your daughter active with mito? Or, is it just the

general that she reacts to so far? Mine all started with the

general's

Chris

>

> No, my son has never had a general but my daughter has and she has

reacted thesame way that I do, my mother and my grandmother did. Her

blood pressure bottoms out and she is very difficult to wake up. You

can go to the UMDF site and print the article that Dr. Cohen has

written, unless someone on line has it and can put it online for

you. I used to have it but when I had computer problems a while back

I lost it. All I can say, is do what our mommy heart tells you. You

are your child's advocate. I feel it is alwyas best to error on the

side of caution.

>

> Kathy, grandma to Audreyk, 3 years

> removed]

Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Hi, Chris

I too have had severe problems after surgeries, and I feel a likely

culprit is the general. If it were me, I would worry that my child

might have my tendencies, and do everything to avoid a general for him.

I believe sometimes they give generals because it is the easiest thing

to do for them, and alternatives might be just as effective if they

are pushed to use them. Just my two cents worth.

Regards

Sunny

PS

I would love to compare notes as to the effect of general anesthsia on

people who have had problems. I won't go into my problems at this

time.

>

> Hi Kathy,

>

> Thank you for the response....  so your son is 31? Has he ever had a

> general anaesthetic?  Our son is nine, I should have mentioned that.

> The anaesthetic component to this does seem to be genetic as my

> maternal grandmother also has had very severe reactions to

> anaesthesia. Where can I find the article written by Dr. Cohen?  I'm

> really feeling that I need to cancel this appt. and have it done at

> the hospital, or, perhaps, done in the office with a twilight

> anaesthesia... I really see no reason for a general But maybe

> that's the mother in me?

>

> Thanks for the insight....

> Chris

>

>

> >

> > I don't know how old your child is that is going to have the teeth

> removed, but I would not let them use a general in the office.  It

> you have had problems in the past with general that would be

> indication enough for me.  My son (non-affected as far as we know,

> and 31yrs. old) had a great deal of dental work done when he was just

> 4 yrs old and they used the nitros gas and he did quite well.  I

> think I would really discuss this at great length with your dentist

> and maybe even print off the article by Dr. Cohen and take in for him

> to read ahead of time.  I don't feel you can be too careful when it

> comes to our kiddos.

> > 

> > Just my thoughts, for what they are worth,

> > Kathy, grandma to Audrey, 3 years

> > ]

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the

> postings and consult with their physicians regarding changes in their

> own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

> one is automatically moderated or removed depending on the severity of

> the attack.

>

>

>

>

>

[Guest guest]

Laurie,

Thanks for the input. I already spoke with my neurosurgeon and he already

suggested I talk with one of the " experts " and find out what just is needed.

The neuro was very open to doing whatever and he said he would even call one of

the other docs if need be.

Kathy

Laureta Fitzgerald lfitzger@...> wrote:

Kathy

When you get to the point of the biopsy, you might want to check with Dr.

Cohen about the muscle that should be biopsied. There are fast twitch and

slow twitch muscles. The surgeon was going to take a piece of muscle from my

back when they removed a lipoma from my back. He said it was the wrong

twitch (can't remember which it was suppose to be).

laurie

> From: kathy boone

> Reply-To:

> Date: Thu, 27 Jan 2005 09:27:43 -0800 (PST)

> To:

> Subject: Re: General Anaesthetics for a child...

>

>

>

> My daughter, Amie has not been Dx with Mito, it is her daughter, Audrey, 3

> years that has mito. However, after talking to the genetics doctor, they feel

> many of our family members along the maternal side have shown many " soft "

> signs, my daughter and myself included. In the future I am looking at needing

> back surgery (I am putting it off for as long as possible), anyway, when they

> do the back surgery we are going to arrange for a muscle bx at that time. It

> unfortunetly will be a frozen bx, but I guess that would be better than

> nothing at this time. Audrey is very affected and has been pretty much since

> birth. She is non-verbal, G-tube completely for nutrition, seizures, unable

> to sit, walk, or roll over, delayed (but not sure to what extent because she

> is no-verbal), unable to take the mito cocktail due to horrendous increase in

> her seizures when we tried putting her on it and she has out lived any

> expectations by the specialist. Dr. Cohen told them two years ago this month

> to

> take her home and enjoy her for the time they had because he didn't think she

> would see 2!!!! The doctors don't always know.

> As everyone on this list knows, she is the sunshine of my day and the stars in

> my sky at night.

>

> Good luck with the teeth removal. Let us know how things go.

>

> Kathy, grandma to Audrey, 3 years

>

> chris1gill wrote:

>

>

> Hi Kathy,

>

> Oh this worries me more to hear... I am the same way, very difficult

> to wake up, but now each time I have a general it gets worse, last

> time I was hospitalized for three days with complications... My

> mommy heart says this is very bad.... that we shouldn't do it, if

> they can't do it with a twilight, then we need to be in a hospital

> setting... Is your daughter active with mito? Or, is it just the

> general that she reacts to so far? Mine all started with the

> general's

>

> Chris

>

>>

>> No, my son has never had a general but my daughter has and she has

> reacted thesame way that I do, my mother and my grandmother did. Her

> blood pressure bottoms out and she is very difficult to wake up. You

> can go to the UMDF site and print the article that Dr. Cohen has

> written, unless someone on line has it and can put it online for

> you. I used to have it but when I had computer problems a while back

> I lost it. All I can say, is do what our mommy heart tells you. You

> are your child's advocate. I feel it is alwyas best to error on the

> side of caution.

>>

>> Kathy, grandma to Audreyk, 3 years

>> removed]

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Kathy

When you get to the point of the biopsy, you might want to check with Dr.

Cohen about the muscle that should be biopsied. There are fast twitch and

slow twitch muscles. The surgeon was going to take a piece of muscle from my

back when they removed a lipoma from my back. He said it was the wrong

twitch (can't remember which it was suppose to be).

laurie

>

> Reply-To:

> Date: Thu, 27 Jan 2005 09:27:43 -0800 (PST)

> To:

> Subject: Re: General Anaesthetics for a child...

>

>

>

> My daughter, Amie has not been Dx with Mito, it is her daughter, Audrey, 3

> years that has mito. However, after talking to the genetics doctor, they feel

> many of our family members along the maternal side have shown many " soft "

> signs, my daughter and myself included. In the future I am looking at needing

> back surgery (I am putting it off for as long as possible), anyway, when they

> do the back surgery we are going to arrange for a muscle bx at that time. It

> unfortunetly will be a frozen bx, but I guess that would be better than

> nothing at this time. Audrey is very affected and has been pretty much since

> birth. She is non-verbal, G-tube completely for nutrition, seizures, unable

> to sit, walk, or roll over, delayed (but not sure to what extent because she

> is no-verbal), unable to take the mito cocktail due to horrendous increase in

> her seizures when we tried putting her on it and she has out lived any

> expectations by the specialist. Dr. Cohen told them two years ago this month

> to

> take her home and enjoy her for the time they had because he didn't think she

> would see 2!!!! The doctors don't always know.

> As everyone on this list knows, she is the sunshine of my day and the stars in

> my sky at night.

>

> Good luck with the teeth removal. Let us know how things go.

>

> Kathy, grandma to Audrey, 3 years

>

> chris1gill chris1gill@...> wrote:

>

>

> Hi Kathy,

>

> Oh this worries me more to hear... I am the same way, very difficult

> to wake up, but now each time I have a general it gets worse, last

> time I was hospitalized for three days with complications... My

> mommy heart says this is very bad.... that we shouldn't do it, if

> they can't do it with a twilight, then we need to be in a hospital

> setting... Is your daughter active with mito? Or, is it just the

> general that she reacts to so far? Mine all started with the

> general's

>

> Chris

>

>>

>> No, my son has never had a general but my daughter has and she has

> reacted thesame way that I do, my mother and my grandmother did. Her

> blood pressure bottoms out and she is very difficult to wake up. You

> can go to the UMDF site and print the article that Dr. Cohen has

> written, unless someone on line has it and can put it online for

> you. I used to have it but when I had computer problems a while back

> I lost it. All I can say, is do what our mommy heart tells you. You

> are your child's advocate. I feel it is alwyas best to error on the

> side of caution.

>>

>> Kathy, grandma to Audreyk, 3 years

>> removed]

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Chris

I'll be thinking of you and your son when the day arrives for the oral

surgery. Please keep us posted.

laurie

>

> Reply-To:

> Date: Thu, 27 Jan 2005 16:39:35 -0000

> To:

> Subject: Re: General Anaesthetics for a child...

>

>

> Hi Lea,

>

> So many questions... Our son is nine, and I forgot, this is at an

> oral surgeon's office. needs to have four adult teeth taken

> out (sort of two in front top & bottom) because he has such an

> extraordinarily small mouth that his teeth are coming in (and not

> coming in) in all the wrong ways, there's no place for some of them

> to even come in... add to that he has a terrible overbite that now

> when he chews, his bottom teeth hit the top of his mouth, precisely

> where all the nerves meet So they've got to be able to adjust his

> bite as well... this poor kid needs a lot of work done They need

> the adults out to make room for the other adults, they need the

> babies out so they can finish the braces that they started so he can

> chew.... poor kid

>

> I agree with you though, the least amount of anaesthetic, the better.

> I can see where they'd want to do this with sedation as eight is an

> awful lot of teeth to take out I just feel awful to begin with &

> now this... I do have a call in to the doctor to make him aware of my

> situation, apparently my husband did not.... We have consulted with

> our regular dentist on this whole plan as well, and he agrees on it,

> the orthodontists office was the one to put the plan together &

> apparently the oral surgeon agrees with the methods too It's just

> so hard to now realize what they wanted to do was use a general

>

> Sorry for the run on sentences, I'm still upset

> Chris

>

>>

>> Hi

>>

>> Hold old is your son? Why do so many have to be extracted?

>>

>> When my son had to have a tooth extracted (a baby one) he only had

> to have a local anesthetic. Also, if your son is old enough to hold

> still, minimal sedation should be possible and preferable.

>>

>> Have you considered having only a few done at a time. I had all my

> wisdom teeth extracted with local anesthesia only, and they were

> badly impacted. A regular tooth should not be a problem to extract

> in such a manner.

>>

>> Also, I would be suspisious of a dentist who would do a general

> anesthesia in his office. Usually they send the patient to the

> hospital. This was true when my children had their wisdom teeth

> removed. We elected to have twilight sleep which the oral surgeon

> does at his office. (Note this was an oral surgeon and not just a

> dentist). He has a surgery there complete with monitoring equipment

> and resuscitation equipment. He said he would not do a general

> anesthesia at the office but would only do it at the hospital. Hope

> this helps.

>> Lea

>>

>>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

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

>

>

[Guest guest]

Kathy

Isn't it nice to work with co-operative docs. It can make all the difference

in how we enter surgery.

laurie

>

> Reply-To:

> Date: Thu, 27 Jan 2005 14:45:55 -0800 (PST)

> To:

> Subject: Re: General Anaesthetics for a child...

>

> Laurie,

>

> Thanks for the input. I already spoke with my neurosurgeon and he already

> suggested I talk with one of the " experts " and find out what just is needed.

> The neuro was very open to doing whatever and he said he would even call one

> of the other docs if need be.

>

> Kathy

>

> Laureta Fitzgerald lfitzger@...> wrote:

>

> Kathy

>

> When you get to the point of the biopsy, you might want to check with Dr.

> Cohen about the muscle that should be biopsied. There are fast twitch and

> slow twitch muscles. The surgeon was going to take a piece of muscle from my

> back when they removed a lipoma from my back. He said it was the wrong

> twitch (can't remember which it was suppose to be).

>

> laurie

>

>> From: kathy boone

>> Reply-To:

>> Date: Thu, 27 Jan 2005 09:27:43 -0800 (PST)

>> To:

>> Subject: Re: General Anaesthetics for a child...

>>

>>

>>

>> My daughter, Amie has not been Dx with Mito, it is her daughter, Audrey, 3

>> years that has mito. However, after talking to the genetics doctor, they feel

>> many of our family members along the maternal side have shown many " soft "

>> signs, my daughter and myself included. In the future I am looking at needing

>> back surgery (I am putting it off for as long as possible), anyway, when they

>> do the back surgery we are going to arrange for a muscle bx at that time. It

>> unfortunetly will be a frozen bx, but I guess that would be better than

>> nothing at this time. Audrey is very affected and has been pretty much since

>> birth. She is non-verbal, G-tube completely for nutrition, seizures, unable

>> to sit, walk, or roll over, delayed (but not sure to what extent because she

>> is no-verbal), unable to take the mito cocktail due to horrendous increase in

>> her seizures when we tried putting her on it and she has out lived any

>> expectations by the specialist. Dr. Cohen told them two years ago this month

>> to

>> take her home and enjoy her for the time they had because he didn't think she

>> would see 2!!!! The doctors don't always know.

>> As everyone on this list knows, she is the sunshine of my day and the stars

>> in

>> my sky at night.

>>

>> Good luck with the teeth removal. Let us know how things go.

>>

>> Kathy, grandma to Audrey, 3 years

>>

>> chris1gill wrote:

>>

>>

>> Hi Kathy,

>>

>> Oh this worries me more to hear... I am the same way, very difficult

>> to wake up, but now each time I have a general it gets worse, last

>> time I was hospitalized for three days with complications... My

>> mommy heart says this is very bad.... that we shouldn't do it, if

>> they can't do it with a twilight, then we need to be in a hospital

>> setting... Is your daughter active with mito? Or, is it just the

>> general that she reacts to so far? Mine all started with the

>> general's

>>

>> Chris

>>

>>>

>>> No, my son has never had a general but my daughter has and she has

>> reacted thesame way that I do, my mother and my grandmother did. Her

>> blood pressure bottoms out and she is very difficult to wake up. You

>> can go to the UMDF site and print the article that Dr. Cohen has

>> written, unless someone on line has it and can put it online for

>> you. I used to have it but when I had computer problems a while back

>> I lost it. All I can say, is do what our mommy heart tells you. You

>> are your child's advocate. I feel it is alwyas best to error on the

>> side of caution.

>>>

>>> Kathy, grandma to Audreyk, 3 years

>>> removed]

>>

>>

>>

>>

>>

>>

>> Medical advice, information, opinions, data and statements contained herein

>> are not necessarily those of the list moderators. The author of this e mail

>> is

>> entirely responsible for its content. List members are reminded of their

>> responsibility to evaluate the content of the postings and consult with their

>> physicians regarding changes in their own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who sends one is

>> automatically moderated or removed depending on the severity of the attack.

>>

>>

[Guest guest]

Sunny

They have had problems intubating me, because I become rigid when given the

anesthetic. They now intubate me while awake, so if it happens, I will at

least have a good airway established.

I also come out of some anesthetics, especially locals and spinals long

before they expect.

laurie

> From: z39z@...

> Reply-To:

> Date: Thu, 27 Jan 2005 17:36:25 -0500

> To:

> Subject: Re: General Anaesthetics for a child...

>

>

> Hi, Chris

>

> I too have had severe problems after surgeries, and I feel a likely

> culprit is the general. If it were me, I would worry that my child

> might have my tendencies, and do everything to avoid a general for him.

> I believe sometimes they give generals because it is the easiest thing

> to do for them, and alternatives might be just as effective if they

> are pushed to use them. Just my two cents worth.

>

> Regards

>

> Sunny

>

> PS

> I would love to compare notes as to the effect of general anesthsia on

> people who have had problems. I won't go into my problems at this

> time.

>

>

>

>

>>

>> Hi Kathy,

>>

>> Thank you for the response....  so your son is 31? Has he ever had a

>> general anaesthetic?  Our son is nine, I should have mentioned that.

>> The anaesthetic component to this does seem to be genetic as my

>> maternal grandmother also has had very severe reactions to

>> anaesthesia. Where can I find the article written by Dr. Cohen?  I'm

>> really feeling that I need to cancel this appt. and have it done at

>> the hospital, or, perhaps, done in the office with a twilight

>> anaesthesia... I really see no reason for a general But maybe

>> that's the mother in me?

>>

>> Thanks for the insight....

>> Chris

>>

>>

>>>

>>> I don't know how old your child is that is going to have the teeth

>> removed, but I would not let them use a general in the office.  It

>> you have had problems in the past with general that would be

>> indication enough for me.  My son (non-affected as far as we know,

>> and 31yrs. old) had a great deal of dental work done when he was just

>> 4 yrs old and they used the nitros gas and he did quite well.  I

>> think I would really discuss this at great length with your dentist

>> and maybe even print off the article by Dr. Cohen and take in for him

>> to read ahead of time.  I don't feel you can be too careful when it

>> comes to our kiddos.

>>>  

>>> Just my thoughts, for what they are worth,

>>> Kathy, grandma to Audrey, 3 years

>>> ]

>>

>>

>>

>>

>>

>> Medical advice, information, opinions, data and statements contained

>> herein are not necessarily those of the list moderators. The author of

>> this e mail is entirely responsible for its content. List members are

>> reminded of their responsibility to evaluate the content of the

>> postings and consult with their physicians regarding changes in their

>> own treatment.

>>

>> Personal attacks are not permitted on the list and anyone who sends

>> one is automatically moderated or removed depending on the severity of

>> the attack.

>>

>>

>>

>>

>>

[Guest guest]

In NJ, there were a bunch of cases about 5 - 10 years ago where

general anesthesia was being used in dentist's offices, and several

court cases ensued when complications happened. Basically the

concern was that there was not an anesthesiologist present during the

sedation, and that there was not even one available.

I would never let me, my husband, or my kids undergo general

anesthesia anywhere other than a hospital. The closest I've come to

that is in a hospital annex, where the hospital was literally down

the hall. But of course many people use " same day surgery " units far

away from hospitals and have general anesthesia at dentist offices.

I would also be concerned about a " twilight " and other anesthesia

options - I personally have trouble with novacaine, especially the

kind they usually give, with the epinephrine. I'd consider a second

opinion on the teeth extractions, plus definitely a pediatric dentist

if he hasn't seen one yet. My son had to have a tooth extracted

because he had three fillings put in that fell out, because he saw a

general dentist originally, and they didn't know how to handle a 4-

year-old (even though he was " good " ).

My younger son had a filling done with nitrous oxide and some topical

numbing gel, and did fine with it. He also had a liquid (chloral

hydrate) for conscious sedation when he had an MRI, and was fine with

that.

I'd also consider getting a comprehensive evaluation by a pediatric

dentist at a children's hospital, that sounds like a lot of

extractions, and maybe a plan can be put in place to try to save the

rest of his teeth.

Take care,

RH

> Oh do I have a problem My son is due to have eight teeth

removed on

> Monday, four adults, four babies... they were to be extracted in

the office. I

> just got off the phone with the office however & they will in fact

be giving

> him a general anaesthetic. This is in the doctor's office, not the

hospital.

>

> As background, I'm a mito mom that has had the disease actively

since I was

> 24, not diagnosed til 32... I do extraordinarily poorly with

general's... the

> first one, at my son's age coincidentally, I just got profusely ill

& was

> admitted, because it too was on an outpatient basis....

>

> What should I do? My first thought is to just say NO.... a twilight

in the

> office would be fine (I do fine with that myself), but a general?

That's a very

> bad idea I think.... but we don't know that our son has a genetic

tendency

> or not... am I just being an over cautious parent? I hope someone

can advise

> me here, because I'm really quite upset

>

> TIA

> Chris

>

>

>

[Guest guest]

Thanks Laurie, you can be well assured that I will give an update Monday

afternoon, any prayers or good thoughts are welcome!!

Chris

In a message dated 1/27/2005 6:43:46 PM Eastern Standard Time,

writes:

Subject: Re: General Anaesthetics for a child...

Chris

I'll be thinking of you and your son when the day arrives for the oral

surgery. Please keep us posted.

laurie

[Guest guest]

Thanks Laurie, you can be well assured that I will give an update Monday

afternoon, any prayers or good thoughts are welcome!!

Chris

In a message dated 1/27/2005 6:43:46 PM Eastern Standard Time,

writes:

Subject: Re: General Anaesthetics for a child...

Chris

I'll be thinking of you and your son when the day arrives for the oral

surgery. Please keep us posted.

laurie