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My kid went nuts on Versed; basically she reacted in an opposite way

of everything this physician has written. Became hyper, then became

very agressive, and then went totally out of control. One of the

hardest moments of my life.

> Anesthesia/surgery/dentists and our AS children have come up on a

few of my

> lists. Thought these links might be of some help to some of you.

>

>

> <><><><><><><><><><><><><>

>

> http://www.autism.com/ari/kirz.html

> Surgical anesthesia and autistic children

>

> http://www.autism.com/ari/dental.html

> Dental Anesthesia for the Autistic Child

> (also has link ~ www.aamgpaloalto.com ~ on dental/pediatric

anesthesia.

>

>

>

>

> " What's done to children, they will do to society " . Orlando A.

Battista

>

> " Nobody realizes that some people expend tremendous energy merely

to be

> normal. " -- Albert Camus

>

> " Every new adjustment is a crisis in self-esteem. " -- Hoffer

>

> " Nothing is impossible; some things just require more steps. "

Author

> Unknown

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  • 3 years later...

Anesthesia and the CMT Patient

by ph F. Antognini, M.D. University of California Medical

Center

Anesthesia is safer now than it has ever been. This is particularly true

for individuals who have medical problems, including patients with

Charcot-Marie-Tooth disease. Two important reasons for this improved

safety are better monitoring devices and shorter-acting anesthetics. How

do these improvements specifically impact patients with CMT?

First, the last decade has seen the introduction of pulse-oximetry and

capnography into routine anesthesia practice. Pulse-oximetry can measure

the amount of oxygen in your bloodstream...a small " Band-aid " is placed

around a finger, earlobe or toe, and a special light is passed through

the finger and a receiver on the other side captures the light and is

able to tell your anesthesiologist how much oxygen is in your

bloodstream. This technology allows your doctor to watch how well your

lungs are working to deliver oxygen to the rest of your body.

Capnography measures the amount of carbon dioxide that your lungs are

producing, and this is an important way of detecting changes in your

breathing while you are asleep for your surgery. Because breathing

problems are an important cause of anesthetic

complications, this monitor has improved our ability to detect problems

early, thus decreasing serious complications. These monitors are

important for CMT patients, since they may have lung problems which they

don't know about.

New anesthetic drugs have the advantage of being shorter acting, so that

patients wake up faster. This may be important for the CMT patient,

since anesthetics depress breathing, and in the light of the potential

lung problems in CMT patients, these newer drugs have an obvious

advantage. These new drugs include propofol and desflurane. Since many

patients with CMT have orthopedic surgery, usually on their legs or

feet, the best choice for anesthesia would be a regional anesthetic such

as a spinal or epidural. Both of these " numb " your body from the waist

down and last for 1-3 hours or longer, depending on what type of

anesthetic drug is used. These anesthetics avoid general anesthesia,

which depresses the whole body. If your surgery is very minor, you may

on need a local injection of anesthetic around where your doctor is

going to do the surgery...this is the best choice, if possible, since

you can recover quickly and go home.

Your anesthesiologist may speak to you the night before surgery, or,

quite often, just prior to your surgery. This sometimes prevents you

from having a lengthy and informative talk about your anesthetic. It is

important that you have every question answered, so as to allay any

fears. Several days before your operation, ask your surgeon who your

anesthesiologist is going to be, and call him or her. Tell him/her about

your CMT and any problems that you may have had with anesthetics in the

past. In this way, you can make sure that they are aware of your

condition, and they can develop an anesthetic plan that is safest and

best for you.

Remember, the type of anesthetic you receive is a decision made by you

and your anesthesiologist. There may be reasons why your

anesthesiologist might recommend an anesthetic different from what you

might be thinking about...every case has to be individualized. But rest

assured that no matter what choice is ultimately made, anesthesia is

safer than it has ever been!

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  • 8 months later...
Guest guest

I'm a non-practicing internist & mother of a 12 yo boy with autism. My

son had general anesthesia for dental rehab at age 4 1/2 at a local

hospital. They gave him valium as a pre-med which was much too long-acting.

There are many other medications available with a shorter half life.

At age 7 my son required sutures on his lip for a fall from a swing. He

was sutured in the ER using " twilight sleep " (IV meds versed & fentanyl).

That worked extremely well. I do recall that the doctor wanted to use

ketamine at 1st, but I didn't think it was a good idea since one of the side

effects can be seizures, and children with autism are already more likely to

have seizures than the typical population.

Insist on being there before & after the procedure.

Also, suggest they use a topical anesthetic on the skin 20 min before

placing the IV. If you have time to go to your local pharmacy, you can get

OTC eli-max without a prescription.

After Jon's dental rehab, we prioritized teaching him how to tolerate

tooth brushing & getting his teeth cleaned. If you want to look at our old

program for ideas, please write me privately.

Marilee

brew@...

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  • 10 months later...
Guest guest

Last week, I underwent both. Monday I had Twilight for colon test (aleep for less than an hour), felt alittle tired that afternoon, but no problems Thur. May 25 went under for over an hour for explant surgury. Felt more tired the first 3 days afterward.sedwards41255 <sedwards41255@...> wrote: Just wondering if everyone that had explantation and a lift went under general anesthesia (unconscious).....or if some had Twilight anesthesia (local with sedation - basically sleeping). I am really afraid of anesthesia...never have been under general anesthesia before....I would think there would be fewer affects with Twilight...than with general.....and have asked Dr. Kolb is I could have Twilight. She said....."anesthesia prefers

general"...but I might still ask for the Twilights if at all possible. That is how afraid I am of anesthesia....

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, I prefer general. I am a whimp and I fear waking up during a surgery more then I fear any other risks. I have had quite a few surgeries and only had one time where I woke up with nausia. Other then that, it was like waking up from a deep sleep. sedwards41255 <sedwards41255@...> wrote: Just wondering if everyone that had explantation and a lift went under general anesthesia (unconscious).....or if some had Twilight anesthesia (local with sedation - basically sleeping). I am really afraid of anesthesia...never have been under general anesthesia before....I would think there would be fewer affects with Twilight...than with general.....and have asked Dr. Kolb is I could have Twilight. She

said....."anesthesia prefers general"...but I might still ask for the Twilights if at all possible. That is how afraid I am of anesthesia....

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Molly,

That makes me feel much better. Thank you! I will be going to Dr.

Kolb and have surgery on June 14th (counting the days!!!).

Thanks for you information on Dr. Knos.

I had blood work done about a month ago...and my liver and kidney

function tests were O.K....so I hope surgery is not cancelled for

any reason. I have been on diflucan for about a week and a half

now...hope that doesn't do anything to the liver readings...

> >

> > Just wondering if everyone that had explantation and a lift went

under

> > general anesthesia (unconscious).....or if some had Twilight

> > anesthesia (local with sedation - basically sleeping).

> >

> > I am really afraid of anesthesia...never have been under general

> > anesthesia before....

> >

> > I would think there would be fewer affects with Twilight...than

with

> > general.....and have asked Dr. Kolb is I could have Twilight.

She

> > said..... " anesthesia prefers general " ...but I might still ask

for the

> > Twilights if at all possible. That is how afraid I am of

> > anesthesia....

> >

> >

>

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, I had twilight sedation for my explant and lift surgery which took 4 hours in a hospital room. I do remember waking up while the surgeon was still working on my right breast, sewing me up. He was talking to the nurse about a movie or something, and so I let them know I could hear them and understand their conversation. They gave me a little bit more and the next thing I remember was waking up in recovery. The twilight wasn't bad at all. Pattysedwards41255 <sedwards41255@...> wrote: Just wondering if everyone that had explantation and a lift went under general anesthesia (unconscious).....or if some had Twilight anesthesia (local with sedation - basically sleeping). I am really afraid of

anesthesia...never have been under general anesthesia before....I would think there would be fewer affects with Twilight...than with general.....and have asked Dr. Kolb is I could have Twilight. She said....."anesthesia prefers general"...but I might still ask for the Twilights if at all possible. That is how afraid I am of anesthesia.... __________________________________________________

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, it sounds like you are right on track. I doubt if your surgery will be

cancelled. My

liver enzymes were high before I went, which is why Dr. Knos ordered another

test the

evening before surgery. She was concerned that the pattern was going 'up'. She

stopped

the surgery, just before I went into the operating room. She was diligent, and

cautious.

This is good.

Most people only think about the surgeon, and rarely the anesthesiologist.

Hospitals often

won't even tell you what anesthesiologist you are going to have, because they

assign it

based on who is there at the time. I refuse to do that. The anesthesiologist

is as

important as the surgeon - I learned that the hard way.

You will be in good hands with Dr. Kolb and Dr. Knos.

> > >

> > > Just wondering if everyone that had explantation and a lift went

> under

> > > general anesthesia (unconscious).....or if some had Twilight

> > > anesthesia (local with sedation - basically sleeping).

> > >

> > > I am really afraid of anesthesia...never have been under general

> > > anesthesia before....

> > >

> > > I would think there would be fewer affects with Twilight...than

> with

> > > general.....and have asked Dr. Kolb is I could have Twilight.

> She

> > > said..... " anesthesia prefers general " ...but I might still ask

> for the

> > > Twilights if at all possible. That is how afraid I am of

> > > anesthesia....

> > >

> > >

> >

>

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Thanks Patty,

I did email Dr. Kolb...and her response was that " anesthesia prefers

to do the general " ...however...it is something I will discuss with

her further when I get there. Like " I know they prefer it ...but

can they do the twilight successfully ...etc. "

I would rather feel better faster.....since we have a 10 hour plus

drive back home. Ya know?

> Just wondering if everyone that had explantation and a lift went

under

> general anesthesia (unconscious).....or if some had Twilight

> anesthesia (local with sedation - basically sleeping).

>

> I am really afraid of anesthesia...never have been under general

> anesthesia before....

>

> I would think there would be fewer affects with Twilight...than

with

> general.....and have asked Dr. Kolb is I could have Twilight. She

> said..... " anesthesia prefers general " ...but I might still ask for

the

> Twilights if at all possible. That is how afraid I am of

> anesthesia....

>

>

>

> __________________________________________________

>

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