Re: General anesthetic question

[Guest guest]

Hi Ania,

I have attached the info below because alot of our kids should stay

away from nitrous oxide - including my son.

Good luck and I hope things go fine for your daughter.

Jen

Anesthesia May Be Fatal In Those With Rare Disorder

By Carroll

NEW YORK (Reuters Health) -July 2, 2003-- A common form of anesthesia,

nitrous oxide, may cause serious harm to patients with a rare

metabolic

disorder, researchers say.

People who are born with certain mutations in the gene responsible for

the breakdown of folate may be at risk for neurologic damage, and even

death, if they are given nitrous oxide, according to a report

published

in The New England Journal of Medicine.

The disorder, known as 5,10-methylenetetrahydrofolate reductase

deficiency (MTHFR), is quite rare, according to report co-author, Dr.

Kirk Hogan, an associate professor of anesthesiology at the University

of Wisconsin in Madison.

" I think there have been fewer than 50 children reported to have it, "

Hogan said in an interview with Reuters Health. " But there is a

concern

about children with the more common mutations of this gene that are

associated with depressed enzyme activity. Those mutations occur in up

to 10 percent of us. The unanswered question is whether people with

those mutations, when given nitrous oxide might experience more subtle

injury. "

Hogan hastened to add that people who were going to have surgery --

and

who don't have MTHFR -- shouldn't be overly worried if they are to

receive nitrous oxide.

" It's really important that kids with this disorder don't get nitrous

oxide, " he added. " For others, who have the more common mutations, I

don't see any cause for panic. Nitrous oxide has been in use for over

100 years. If there was a serious problem with it, I expect we would

have seen it by now. "

Still, Hogan said, further research on the effects of nitrous oxide on

people with the more common mutations, might explain why some people

have delayed recovery from surgery.

For the new study, Hogan and his colleagues re-examined data on the

1983

death of an infant. When the baby was three months old, he underwent

anesthesia to have a leg growth biopsied and later was anesthetized

again to have the leg tumor removed.

Though healthy when released from the hospital after surgery, the baby

started having seizures and breathing problems 17 days later. He died

46

days after surgery.

In 1985, when Hogan first looked at the infant's anesthesiology

records,

no one knew what caused the child to suffer brain damage, which

eventually killed him.

" This little guy's been on my mind for 15 years, " Hogan said. " Then,

several years ago the mutations of the genes that encode for this

disorder were found. "

And new research on the disorder pointed to a possible link between

the

baby's damaged brain and anesthesia.

Nitrous oxide, when given to people with MTHFR, blocks the production

of

methionine. And methionine plays an important role in DNA synthesis of

neurotransmitters and myelin, the insulating material covering nerves.

" Methionine is important for everyone, but especially those with

developing brains, " Hogan said. " This little guy was in the first few

weeks of life at a time when his body was busily making brain cells. "

SOURCE: The New England Journal of Medicine 2003;349:45-50.

_____

However, in children with developmental delay or altered

homocysteine metabolism, methionine levels should be determined

before using nitrous oxide-containing anesthesia, he noted.

N Engl J Med 2003;349:5-6,45-50

>

> Our daughter is about to have an eye exam under general anesthetic

> and I am wondering if there are any ASD specific complications that

> other parents have found as a result of being put under a mild

> general anesthetic. Any suggestions?

> Any input welcome.

> Thank you, Ania

[Guest guest]

Thank you for your info - just to mention before the procedure they

had me fill out an anesthetic questionaire where in 3 places I

wrote " no nitrous oxide please - MTHFR " and put stars around my

notes. The doctors let me go in with into the OR and be

there just until they put her under the gen anest. and the first

thing they were going to give her was a mask with NITROUS OXIDE!!!!

Thankfully I was there to object to it! They did not even read the

anesthetic questionaire!

Ania

> >

> > Our daughter is about to have an eye exam under general

anesthetic

> > and I am wondering if there are any ASD specific complications

that

> > other parents have found as a result of being put under a mild

> > general anesthetic. Any suggestions?

> > Any input welcome.

> > Thank you, Ania

[Guest guest]

Ania,

ARRRGGGG...

I can't help thinking if they would have taken responsibility for

their mistake if anything did happen to your daughter.

Good for you for being there, staying there, standing tall and

speaking out for what you want and what you don't want.

I have had so many Dr.'s roll there eyes at me that there is too many

to count. It does not even phase me anymore and I'm too busy to

teach/convince them.

The only thing that counts is that you know what is right or wrong

for your child and you have done a lot of child specific research. So

your opinion and written wishes should be respected.

When my son went in to have his amalgams removed ( because

another " I'll do what I want because she's just a Mom " Dr. put them

in against my written request not to) Dr. Green had written a very

specific list of anesthesia they could use and the ones they could

not use. He also said that he did not want any narcotics used.

The amalgam removal went fine, the Dentist came out to speak to me,

(great guy - hates mercury)and then we went in to see Devon in post

op and he would not wake up. We called the anesthesiologist in to

check on him and in came a different anesthesiologist (2nd). The

Dentist asked where the attending anesthesiologist (1st) had gone

since he was the one who was there during the removal. To make a long

story short, the 1st anesth. (who had read the chart and all the

requests) had left to attend another patient who was having

complications in another room, so the 2nd anesth. had decided to NOT

read the chart and give him 3 different narcotics for the pain. WHAT

PAIN I asked. He only had flippin amalgams removed. Dr. Green and our

great Dentist were livid.

I can't print what I was...

It took Devon almost 1 month to detox those drugs and the regression

he went through was devastating for all of us.

So my point is, even though you think you are on top of things,

sometimes you are not.

I don't really know what the answer is to making sure your child

receives the safest care and convincing a needed Dr. that you really

do know what you are talking about but I do know if it feels wrong

then take your childs hand and get out of there.

After all, most of our kids can't speak for themselves and they rely

completely on us to speak for them and protect them from these types

of errors.

It is a big job being an " autism Mom " ... but this part of the job I

take very seriously now and no longer take for granted or trust that

charts will be read and so on.

Too bad...

Jen

> > >

> > > Our daughter is about to have an eye exam under general

> anesthetic

> > > and I am wondering if there are any ASD specific complications

> that

> > > other parents have found as a result of being put under a mild

> > > general anesthetic. Any suggestions?

> > > Any input welcome.

> > > Thank you, Ania

[Guest guest]

I appreciate this discussion. I'll look into all of the suggestions and the

possibility of trying to sleep deprive her. I just wonder if there isn't another

test that could be as accurate. She continues with seizures and the neurologist

just doesn't know why.

Shari

Re: General anesthetic question

>

>

>

> Hi Shari,

> Nitrous Oxide is not harmful to everyone unless your child has the

> MTHFR mutation. If you are not sure about this then it is better

safe

> than sorry and you should be cautious.

> There are so many other general anesthetics they can use... the

> problem seems to sadly lie in the fact that some Dr.'s don't

believe

> that your concerns are valid due to their lack of education in

> regards to our kids.

>

> If I were you I would contact your DAN! and ask for a list of what

> can be used for the MRI - pre and post.

>

> Make sure though they follow through on it... talk to the

> anesthesiologist and make sure he completely understands - then

still

> follow through.

>

> You may want to try posting to DR. JM. I know she is off busy

writing

> her 3rd book, but might be able to give you some ideas.

>

> I can look for the list that Dr. Green gave me but I would think

that

> that list would have been child specific...

>

> good luck,

>

> Jen

Many frequently asked questions and answers can be found at

<http://forums.autism-rxguidebook.com/default.aspx>

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[Guest guest]

Our daughter has a history of seizures. Thankfully they stopped

last February and her EEG is within normail limits with the

occasional spike, but our neurologist was suggesting that we do a

special test which combines an MRI adn EEG which doctors use before

a child goes in for surgery. Not that we were ever planning surgery

for , but apparently it is the most accurate test that tells

the doctors what is going on in the brain by correlating the

structure of the brain with seizure activity. At least that test in

not invasive.

If you are going to be putting her under general, you may as well

make it worth while.

Our neurlogist is also recommending doing a lumbar pucture on

and checking for spinal fluid amino acids and

neurotransmitter diseases but I am hesitant to go ahead with it as

it is so invasive. She thinks that eventhough 's seizures

have stopped, the underlying issues are still there because

is still very delayed and non-verbal.

What type of seizures is your daughter having. had

myoclonic seizures - many jerks per day every day and then one day

they stopped.

I am not sure if you saw the article on seizures and nutritional

treatments on the VRP website. I know I posted that link a while

back. I can re-post it. Because 's EEG in not entirely

normal I always look for supplements/foods that keep seizures away

and I would like to believe that they make a difference like zinc,

B6, DMG, magnesium, B1 (Thiamine)and taurine are the ones that I

make sure always gets. Have you tried GABA? I think that

what worked for were the supplements, the SCD and lots of

prayers and lots of TLC. The ketogeninc diet made worse,

but have you looked into it? It works for many kids.

Just some thoughts. You may already have done all those things, but

I thought I would post them just in case.

Ania

> > I am a nurse anesthetist with a 5 year old boy on the

> spectrum. I

> > have been following this thread and I am sorry that some of

you

> had a

> > bad experience with your anesthesiologist. Do a google

search on

> > nitrous and B12. Nitrous depletes B 12.........our kids have

a

> > deficiency of B12. Our children improve with the B12

protocol

> and

> > they regress after a general anesthetic. Duh!

> > An adult usually has a IV in place and meds are given through

> that for

> > induction. With a child who is young and has no IV, an

inhalation

> > induction is performed using high flows of oxygen, nitrous and

an

> > anesthetic gas. When the child is asleep an IV is placed.

> Nitrous

> > has been used as a adjunct gas for years without problems.

> > I agree with your assessment that the doctors don't believe

> that

> > your concerns are valid. My advice.......tell them that your

> child is

> > ALLERGIC to nitrous..... you have documentation that your

child

> has a

> > B12 deficiency. Tell them that if your child gets nitrous

he

> will

> > have a severe regression.

> > Hope this helps.

> >

> > Sym

> >

> >

> > Message: 21

> > Date: Mon, 24 Jan 2005 16:31:47 -0000

> > From: " katewish2000 " <magnolias@t...>

> > Subject: Re: General anesthetic question

> >

> >

> >

> > Hi Shari,

> > Nitrous Oxide is not harmful to everyone unless your child has

the

> > MTHFR mutation. If you are not sure about this then it is

better

> safe

> > than sorry and you should be cautious.

> > There are so many other general anesthetics they can use... the

> > problem seems to sadly lie in the fact that some Dr.'s don't

> believe

> > that your concerns are valid due to their lack of education in

> > regards to our kids.

> >

> > If I were you I would contact your DAN! and ask for a list of

what

> > can be used for the MRI - pre and post.

> >

> > Make sure though they follow through on it... talk to the

> > anesthesiologist and make sure he completely understands -

then

> still

> > follow through.

> >

> > You may want to try posting to DR. JM. I know she is off busy

> writing

> > her 3rd book, but might be able to give you some ideas.

> >

> > I can look for the list that Dr. Green gave me but I would

think

> that

> > that list would have been child specific...

> >

> > good luck,

> >

> > Jen

>

>

>

>

>

> Many frequently asked questions and answers can be found at

<http://forums.autism-rxguidebook.com/default.aspx>

>

>

>

>

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

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