Re: anesthesia with possible complex I deficiency

[Guest guest]

Virginia,

I dont respond well to anesthesia at all. I would advice you to talk to the anesthesiologist beforehand and tell him about your daughters condition. I have a hard time coming out of the anesthesia and then it takes days for the effcts to wear off. Mini doses work best for me. Hope things go well.

[Guest guest]

Virginia,

I dont respond well to anesthesia at all. I would advice you to talk to the anesthesiologist beforehand and tell him about your daughters condition. I have a hard time coming out of the anesthesia and then it takes days for the effcts to wear off. Mini doses work best for me. Hope things go well.

[Guest guest]

Virginia,

I dont respond well to anesthesia at all. I would advice you to talk to the anesthesiologist beforehand and tell him about your daughters condition. I have a hard time coming out of the anesthesia and then it takes days for the effcts to wear off. Mini doses work best for me. Hope things go well.

[Guest guest]

Hi Virginia,

Mame has had general anesthesia a number of times. Since the mito has been a possibility, they have taken malignant hyperthermia precautions. She's never had a problem at all, even before we knew about the mito.

Just our experience.

Maggie

[Guest guest]

Hi Virginia,

Mame has had general anesthesia a number of times. Since the mito has been a possibility, they have taken malignant hyperthermia precautions. She's never had a problem at all, even before we knew about the mito.

Just our experience.

Maggie

[Guest guest]

Virginia,

has special precautions whenever he goes under.

There is a really nice article in the UMDF website for anethesia

precautions. There are several types of drugs which he can't use

since they depress the metabolism. We will not let him have versaid

as it makes his recovery time about 6 hours longer than going with

out it. Also we do not let him be " NPO " or fasting as long as they

recommend for the other kids. We call the anesthesiologist before

hand and work out a modified food/water schedule. If the gap is too

long we have them give him IV food to keep him from crashing. We

also schedule the surgeries for first thing so that he will sleep

through the no food time.

We have not had lose milestones after surgery but I know some

people have had major loss of function after any surgeries (in the

archives).

's last surgery was in October of 2002.

Twana

> Has anyone had any recent experiences with your child being under

general

> anesthesia and any special precautions being taken? Has anyone had

any

> difficulties with their child emerging from anesthesia in the same

status as

> before anesthesia?

>

> Thanks for your comments.

>

> Virginia, Emma's Mom (3 1/2 years, complex I ETC deficiency)

[Guest guest]

Virginia,

has special precautions whenever he goes under.

There is a really nice article in the UMDF website for anethesia

precautions. There are several types of drugs which he can't use

since they depress the metabolism. We will not let him have versaid

as it makes his recovery time about 6 hours longer than going with

out it. Also we do not let him be " NPO " or fasting as long as they

recommend for the other kids. We call the anesthesiologist before

hand and work out a modified food/water schedule. If the gap is too

long we have them give him IV food to keep him from crashing. We

also schedule the surgeries for first thing so that he will sleep

through the no food time.

We have not had lose milestones after surgery but I know some

people have had major loss of function after any surgeries (in the

archives).

's last surgery was in October of 2002.

Twana

> Has anyone had any recent experiences with your child being under

general

> anesthesia and any special precautions being taken? Has anyone had

any

> difficulties with their child emerging from anesthesia in the same

status as

> before anesthesia?

>

> Thanks for your comments.

>

> Virginia, Emma's Mom (3 1/2 years, complex I ETC deficiency)

[Guest guest]

Hey there!

My 12 year old daughter had very serious problems with anethsesia when she had her muscle/skin biopsy done.

She vomited for three weeks and had such a severe headache. We had nurses coming to the house to give her shots for the pain and nausia. She was like a limp rag doll and she was unable to speak, walk or sit up for a long time. Her brain function took a nose dive which we never regained to where she was and she has had incontinence problems and a long list of other things since then. I dont want to frighten you but make you aware of the nightmare we went through. I have yet to find another Dr. who has seen this happen before.

So it remains unexplained by them. I fully believe it was do to the anethesia.

I wish you and Emma all the best!

Horsley

leehorsley@...

anesthesia with possible complex I deficiency

Has anyone had any recent experiences with your child being under general anesthesia and any special precautions being taken? Has anyone had any difficulties with their child emerging from anesthesia in the same status as before anesthesia?Thanks for your comments.Virginia, Emma's Mom (3 1/2 years, complex I ETC deficiency) Please contact mito-owner with any problems or questions.

[Guest guest]

our daughter has gone under a few times and everything has been fine,

however, they have to treat her with 'malignant hyperthermia'

precautions.

bethany, mom to brennan 6, palmer & anna grace (leighs) 3

> Has anyone had any recent experiences with your child being under

general

> anesthesia and any special precautions being taken? Has anyone had

any

> difficulties with their child emerging from anesthesia in the same

status as

> before anesthesia?

>

> Thanks for your comments.

>

> Virginia, Emma's Mom (3 1/2 years, complex I ETC deficiency)

[Guest guest]

Virgina,

has mito encephalopathy,complex 3 and carnitine deficency,so this may not be of any help,but anyway here goes.

had surgery Nov 26th for placement of a g-tube,port and a neisen for reflux.

She also had surgery again Dec 5th to replace the g-tube and retrieve parts of the first one she had pulled out and broke.

I don't know what precautions WERE taken with the anesthesia,but I do know how interested they were in theinformation I had printed from the UMDF site.These papers were read while I was present and lots of questions were asked about mito.

had no problems either time with the anesthesia.Well let me back up on that statement,she had no problem waking up or vomiting.Within 24 hrs she did have a fever over 104 and lots of muscle spasms,especially in her right foot and left leg.

She is still having the spasms,taking 60mg Baclofen.They are better but not gone.Her foot is now turned down,I'm not sure that's going to get better.We do exercise it but I haven't seen any improvement yet.

As far as mental status is concerned,I'm not sure.She had already declined soooooo much since Sept,I can't actually say it's any worse now.

On the up side,she LOOKS better.She is begining to try feeding herself finger foods again, has trouble lifting arms to get her hands to her mouth.She is also trying to string beads again,doesn't do very well but at least she is trying and that is something she haven't done in several months.

I hope this has answered some of your questions.

, Mom to

anesthesia with possible complex I deficiency

Has anyone had any recent experiences with your child being under general anesthesia and any special precautions being taken? Has anyone had any difficulties with their child emerging from anesthesia in the same status as before anesthesia?Thanks for your comments.Virginia, Emma's Mom (3 1/2 years, complex I ETC deficiency) Please contact mito-owner with any problems or questions.

[Guest guest]

Virgina,

has mito encephalopathy,complex 3 and carnitine deficency,so this may not be of any help,but anyway here goes.

had surgery Nov 26th for placement of a g-tube,port and a neisen for reflux.

She also had surgery again Dec 5th to replace the g-tube and retrieve parts of the first one she had pulled out and broke.

I don't know what precautions WERE taken with the anesthesia,but I do know how interested they were in theinformation I had printed from the UMDF site.These papers were read while I was present and lots of questions were asked about mito.

had no problems either time with the anesthesia.Well let me back up on that statement,she had no problem waking up or vomiting.Within 24 hrs she did have a fever over 104 and lots of muscle spasms,especially in her right foot and left leg.

She is still having the spasms,taking 60mg Baclofen.They are better but not gone.Her foot is now turned down,I'm not sure that's going to get better.We do exercise it but I haven't seen any improvement yet.

As far as mental status is concerned,I'm not sure.She had already declined soooooo much since Sept,I can't actually say it's any worse now.

On the up side,she LOOKS better.She is begining to try feeding herself finger foods again, has trouble lifting arms to get her hands to her mouth.She is also trying to string beads again,doesn't do very well but at least she is trying and that is something she haven't done in several months.

I hope this has answered some of your questions.

, Mom to

anesthesia with possible complex I deficiency

Has anyone had any recent experiences with your child being under general anesthesia and any special precautions being taken? Has anyone had any difficulties with their child emerging from anesthesia in the same status as before anesthesia?Thanks for your comments.Virginia, Emma's Mom (3 1/2 years, complex I ETC deficiency) Please contact mito-owner with any problems or questions.

[Guest guest]

Virgina,

has mito encephalopathy,complex 3 and carnitine deficency,so this may not be of any help,but anyway here goes.

had surgery Nov 26th for placement of a g-tube,port and a neisen for reflux.

She also had surgery again Dec 5th to replace the g-tube and retrieve parts of the first one she had pulled out and broke.

I don't know what precautions WERE taken with the anesthesia,but I do know how interested they were in theinformation I had printed from the UMDF site.These papers were read while I was present and lots of questions were asked about mito.

had no problems either time with the anesthesia.Well let me back up on that statement,she had no problem waking up or vomiting.Within 24 hrs she did have a fever over 104 and lots of muscle spasms,especially in her right foot and left leg.

She is still having the spasms,taking 60mg Baclofen.They are better but not gone.Her foot is now turned down,I'm not sure that's going to get better.We do exercise it but I haven't seen any improvement yet.

As far as mental status is concerned,I'm not sure.She had already declined soooooo much since Sept,I can't actually say it's any worse now.

On the up side,she LOOKS better.She is begining to try feeding herself finger foods again, has trouble lifting arms to get her hands to her mouth.She is also trying to string beads again,doesn't do very well but at least she is trying and that is something she haven't done in several months.

I hope this has answered some of your questions.

, Mom to

anesthesia with possible complex I deficiency

Has anyone had any recent experiences with your child being under general anesthesia and any special precautions being taken? Has anyone had any difficulties with their child emerging from anesthesia in the same status as before anesthesia?Thanks for your comments.Virginia, Emma's Mom (3 1/2 years, complex I ETC deficiency) Please contact mito-owner with any problems or questions.