Re: The affects Anesthesia

[Guest guest]

Hi

My son Colby has COX IV, he has been under anesthia many times with no

problems. They use the kind of anesthia that they use for kids with muscular

dystrophy. He does require oxygen afterwords and recovers a little slower,

but we always have an anesthiologist at his side for any procedure, even an

MRI, or EEG. He is almost 12 years old and having a good winter, although

weakness and stamina is not well.

Good Luck!

MOM to Colby, COX IV, Fatty acid disorder, agenesis of the Corpus Callosum,

ADHD

[Guest guest]

I hear you, Zach took a little while to come out of anesthesia after

his biopsy. He did fine during the mri. His opthomologist has talked

about having a sty surgically removed but i said lets try and find

any other alternative since his dx of ga2. HE can not fast so i try

to avoid him being put out unless its medically necissary.

They knew of her mito history right? We were sent to albany med for

the biopsy because they knew how to handle kids like this.

They knew what he was being tested for and htey took great care...

sarah

mom to zach 19 months ga2

> Well first of all I want to say hi ! Now I would like to tell you

> all about our day yesterday. Yesterday my 28 month old daughter

went

> to have a BAER (hearing test) and well they gave her anesthesia and

> she had her test done but what hapened afterwards is what Im

going

> to tell you about. My daughter (Cassandra) was not waking up

very

> well, they started the testing at 3pm and the testing took

> appoximatly 1 hour, so I figured that she would be coming to

> recovery soon so I could see her ,well I finally got called into

> see her at about 7pm and she was on blow by o2 because she was

not

> doing to well because of the affects of the Anesthesia and they

> wrere prparing to possibly over night at that time Of course Im

> in tears seeing my daughter breathing really swallow and on the

> blowby o2 , she was finally starting to come around about

another

> hour later by she was still breathing really shallow it took her

> about another two hours before she could FINALLY breath on her

> own at room air (which is 21 percent 02) we finally were moved

> into the second phase recovery at about 9:30 pm and was able to

> have some pedialyte to see if she would hold it down (thank god

she

> did) and then I was able to give her her meds . We wre FINALLY

able

> to go home at about 10:30 pm and Cassandra was doing pretty

well

> considering what an ordeal she has been through to just have her

> hearing checked (Cassandra has hearing aid and has mild to

> moderate hearing loss in her right ear and moderate to severe in

> her left ear) . We found out that there was no changes in her

left

> ear but in her right there was a 10 desipal loss of hearing which

is

> a change . The MORAL to my story is think twice before you put

you

> kids through Anesthesia , We learned the hard way and we are not

> going to put our daughter through anymore of that unless it

> is " ABSULUTLY " NESESSARY " because of the affects it had on our

> daughter and us . We are learning as we go ang boy WHEW it can be

> tough. That is my story . Take care all and give your little

ones

> hugs. sweetstuff2girls Cassandra 28 months- unspecified Mito,

Ayla

> 16 months- healthy

[Guest guest]

We were told that using general anesthesia on a mito pateint could

cause malignant hyperthermia. I'm glad everything worked out, I can

only imagine the fear and panic you went through.

[Guest guest]

Hi,

doesn't tend to do anesthesia well. A long time ago the docs

would use muscle relaxers instead of gas because of the possible mito. Well

is so low tone anyway the muscle releaxers were a killer. They

couldn't exhubate him because his tongue would fall back into his throat and

he'd have to be on O2. When he got his g-tube he was in the ICU for 2 days

because of breathing problems from the anesthesia.

One time the doc did use gas and it was so much better!!! He couldn't

believe muscle relaxers were even used! Now comes out just fine.

They are still prepared for the possible malignant hypothermia, but so far

so good.

Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

http://u2.lvcm.com/jscb

>snip<

> well, they started the testing at 3pm and the testing took

> appoximatly 1 hour, so I figured that she would be coming to

> recovery soon so I could see her ,well I finally got called into

> see her at about 7pm and she was on blow by o2 because she was not

> doing to well because of the affects of the Anesthesia and they

> wrere prparing to possibly over night at that time Of course Im

> in tears seeing my daughter breathing really swallow and on the

> blowby o2 , she was finally starting to come around about another

> hour later by she was still breathing really shallow it took her

> about another two hours before she could FINALLY breath on her

> own at room air (which is 21 percent 02) we finally were moved

> into the second phase recovery at about 9:30 pm and was able to

> have some pedialyte to see if she would hold it down (thank god she

> did) and then I was able to give her her meds . We wre FINALLY able

> to go home at about 10:30 pm and Cassandra was doing pretty well

> considering what an ordeal she has been through to just have her

> hearing checked (Cassandra has hearing aid and has mild to

> moderate hearing loss in her right ear and moderate to severe in

> her left ear) . We found out that there was no changes in her left

> ear but in her right there was a 10 desipal loss of hearing which is

> a change . The MORAL to my story is think twice before you put you

> kids through Anesthesia , We learned the hard way and we are not

> going to put our daughter through anymore of that unless it

> is " ABSULUTLY " NESESSARY " because of the affects it had on our

> daughter and us . We are learning as we go ang boy WHEW it can be

> tough. That is my story . Take care all and give your little ones

> hugs. sweetstuff2girls Cassandra 28 months- unspecified Mito, Ayla

> 16 months- healthy

[Guest guest]

Did they know your daughter is suspected of having mito? The reason I ask is there are certain types of anesthesia that are dangerous and some that the Mito kids do better with.

The affects Anesthesia

Well first of all I want to say hi ! Now I would like to tell you all about our day yesterday. Yesterday my 28 month old daughter went to have a BAER (hearing test) and well they gave her anesthesia and she had her test done but what hapened afterwards is what Im going to tell you about. My daughter (Cassandra) was not waking up very well, they started the testing at 3pm and the testing took appoximatly 1 hour, so I figured that she would be coming to recovery soon so I could see her ,well I finally got called into see her at about 7pm and she was on blow by o2 because she was not doing to well because of the affects of the Anesthesia and they wrere prparing to possibly over night at that time Of course Im in tears seeing my daughter breathing really swallow and on the blowby o2 , she was finally starting to come around about another hour later by she was still breathing really shallow it took her about another two hours before she could FINALLY breath on her own at room air (which is 21 percent 02) we finally were moved into the second phase recovery at about 9:30 pm and was able to have some pedialyte to see if she would hold it down (thank god she did) and then I was able to give her her meds . We wre FINALLY able to go home at about 10:30 pm and Cassandra was doing pretty well considering what an ordeal she has been through to just have her hearing checked (Cassandra has hearing aid and has mild to moderate hearing loss in her right ear and moderate to severe in her left ear) . We found out that there was no changes in her left ear but in her right there was a 10 desipal loss of hearing which is a change . The MORAL to my story is think twice before you put you kids through Anesthesia , We learned the hard way and we are not going to put our daughter through anymore of that unless it is "ABSULUTLY" NESESSARY" because of the affects it had on our daughter and us . We are learning as we go ang boy WHEW it can be tough. That is my story . Take care all and give your little ones hugs. sweetstuff2girls Cassandra 28 months- unspecified Mito, Ayla 16 months- healthy Please contact mito-owner with any problems or questions.

[Guest guest]

Hey all!

When had her muscle biopsy last Sept. We had problems associated with the anesthesia.

vomited for three weeks and was unable to even sit up in bed she was so weak. After two trips to the ER and bag after bag of IV fluid we managed to drive the eight hours home. We had nurses coming to give her shots for vomiting ( they did not do much) and for the severe pain she was in. She lost her ability to speak for several days and could not walk or sit up. She regressed to a baby like stage, behavior and actions and speach when she was able to speak. is eleven (twelve in May) and she has never recovered her school skills we are at Kindergarten level and are unable to do much school work at all because she gets so tired and frustrated because she cant remember, and the pain in her hands get so bad from writing. Dont know if she will ever get back in school. Just when we think we will try it something else happens. Personally I think the stress of school is to much for her and not worth putting her through all that it would take to get her there. By the time we got her there she would be so tired and ready to sleep.

has done a deffinate nose dive since Sept. and I dont intend to put her to sleep for anything if its not just absolutly a must.

Prayers and hugs to all!

Horsley