Re: concerned re: anesthesia, need input

[Guest guest]

Hi my daughter is 26 with autism and epilepsy grand mal and petit mal seizures

she has had anesthesia about 5 times with no problems. Good luck to you let me

know if i can help joni

monkeysmeemee <monkeyboyhouse@...> wrote: Hi, everyone,

About a month ago, my 6yo, who has autism and a sleep disorder, began

displaying tics and staring episodes (about 20 seconds, sometimes

followed by rapid fluttering of his eyelids)that looked like they

could have been petit mal seizures. We saw our pediatric neurologist

who ordered an EEG and an MRI to be done during an overnite stay in

the hospital. He would first be anesthetized for the MRI, then just

before bringing him out of the anesthesia, they would put the EEG cap

on him.

Meanwhile, in the month it took to schedule this (it's scheduled for

next week) we saw no tics or seizures until this weekend when he had

a 5 second staring episode followed by rapid eyelid fluttering.

My husband and I are pretty concerned about anesthetizing him,

especially since his symptoms are mild and far between, and bc in the

past he has pretty consistently had bad reactions to prescription

meds. Also, I'm not educated as to what an MRI will show and it's

fairly unlikely he'll keep the EEG cap on long enough to see

anything.

We're meeting w/the anesthesiologist Fri. AM to discuss what will be

done during the procedure. I guess what I'd like to know is, what are

the potential risks of not going ahead w/the procedure at this time?

I don't know what happens if a person has undiagnosed/untreated

seizures.

I'd be grateful for any advice.

Thanks

Carla

[Guest guest]

Hi, I am new to this group but can give you one comment. About 7 months ago,

my 8

year old child with autism was experiencing exactly what you describe. She is

now having

more severe seizures with convulsions, tongue noises...I am trying to figure out

what to do

next. Our neurologist is useless. I am thinking of traveling to find a good

neurologist but

from what I am hearing, EEG's can be pretty useless. A child might not have a

seizure

during the timeframe and then all is lost. What are most families doing in this

case. Do

you just try drugs randomly? Are there any drugs that don't create all the

negative side

effects of sleepiness, loss of personality...difficulty with learning...I am

concerned about

anesthesia as well. Thanks, Terri

>

> Hi, everyone,

>

> About a month ago, my 6yo, who has autism and a sleep disorder, began

> displaying tics and staring episodes (about 20 seconds, sometimes

> followed by rapid fluttering of his eyelids)that looked like they

> could have been petit mal seizures. We saw our pediatric neurologist

> who ordered an EEG and an MRI to be done during an overnite stay in

> the hospital. He would first be anesthetized for the MRI, then just

> before bringing him out of the anesthesia, they would put the EEG cap

> on him.

>

> Meanwhile, in the month it took to schedule this (it's scheduled for

> next week) we saw no tics or seizures until this weekend when he had

> a 5 second staring episode followed by rapid eyelid fluttering.

>

> My husband and I are pretty concerned about anesthetizing him,

> especially since his symptoms are mild and far between, and bc in the

> past he has pretty consistently had bad reactions to prescription

> meds. Also, I'm not educated as to what an MRI will show and it's

> fairly unlikely he'll keep the EEG cap on long enough to see

> anything.

>

> We're meeting w/the anesthesiologist Fri. AM to discuss what will be

> done during the procedure. I guess what I'd like to know is, what are

> the potential risks of not going ahead w/the procedure at this time?

> I don't know what happens if a person has undiagnosed/untreated

> seizures.

>

> I'd be grateful for any advice.

>

> Thanks

> Carla

>

[Guest guest]

hi

my kid is 2 and half month. 3-4months back he got a lot of seizure and even at

the time of birth he got seizure. now he is on medication KEPPRA. and he is

doing well and no seizure at all.

i must tell you that you should try medication they are good.

but for most important is to give him nutritious food and good quantity of milk.

i think earlier my kid was not getting proper nutritious food and now i am

taking care of his every bite that its should be nutritious.

please please please give your son/daughter a lot nutrious food and milk so that

he will be seizure free.

thanking you

anshu gang

From: tlschuldt2001@...

Date: Tue, 19 Feb 2008 04:03:20 +0000

Subject: [ ] Re: concerned re: anesthesia, need input

Hi, I am new to this group but can give you one comment. About 7

months ago, my 8

year old child with autism was experiencing exactly what you describe. She is

now having

more severe seizures with convulsions, tongue noises...I am trying to figure out

what to do

next. Our neurologist is useless. I am thinking of traveling to find a good

neurologist but

from what I am hearing, EEG's can be pretty useless. A child might not have a

seizure

during the timeframe and then all is lost. What are most families doing in this

case. Do

you just try drugs randomly? Are there any drugs that don't create all the

negative side

effects of sleepiness, loss of personality...difficulty with learning...I am

concerned about

anesthesia as well. Thanks, Terri

>

> Hi, everyone,

>

> About a month ago, my 6yo, who has autism and a sleep disorder, began

> displaying tics and staring episodes (about 20 seconds, sometimes

> followed by rapid fluttering of his eyelids)that looked like they

> could have been petit mal seizures. We saw our pediatric neurologist

> who ordered an EEG and an MRI to be done during an overnite stay in

> the hospital. He would first be anesthetized for the MRI, then just

> before bringing him out of the anesthesia, they would put the EEG cap

> on him.

>

> Meanwhile, in the month it took to schedule this (it's scheduled for

> next week) we saw no tics or seizures until this weekend when he had

> a 5 second staring episode followed by rapid eyelid fluttering.

>

> My husband and I are pretty concerned about anesthetizing him,

> especially since his symptoms are mild and far between, and bc in the

> past he has pretty consistently had bad reactions to prescription

> meds. Also, I'm not educated as to what an MRI will show and it's

> fairly unlikely he'll keep the EEG cap on long enough to see

> anything.

>

> We're meeting w/the anesthesiologist Fri. AM to discuss what will be

> done during the procedure. I guess what I'd like to know is, what are

> the potential risks of not going ahead w/the procedure at this time?

> I don't know what happens if a person has undiagnosed/untreated

> seizures.

>

> I'd be grateful for any advice.

>

> Thanks

> Carla

>

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[Guest guest]

Hello,

My son is 9 and has those staring episodes also. I'm pretty new to

the seizure issue, so I'm trying to learn as much as possible. We

saw a ped neurologist yesterday who ordered the 24 hour in hospital

EEG to be followed by the MRI. I know the cap is going to flip him

out, so we are trying to get some tips from our OT to see if we can

desensitize him somehow. We plan on giving him a buzz cut beforehand

hoping that it won't pull his hair so much. The Dr. said that once

they have the cap on for a while they get used to it and do fine (I

think he saw the concerned look on my face). He has also been under

anesthesia several times and has done pretty well with it, except he

will pull out the IV if you don't keep an eye on him every second. I

would try to avoid the nitrous oxide if possible, just one less thing

if they can do it without.

I'm also planning to call the Dr. to see what they do if he flips out

and tries to pull the sensors off.

Please let us know how it goes.

Good luck!

Debbie

> > Hi, everyone,

> >

> > About a month ago, my 6yo, who has autism and a sleep disorder,

began

> > displaying tics and staring episodes (about 20 seconds, sometimes

> > followed by rapid fluttering of his eyelids)that looked like they

> > could have been petit mal seizures. We saw our pediatric

neurologist

> > who ordered an EEG and an MRI to be done during an overnite stay

in

> > the hospital. He would first be anesthetized for the MRI, then

just

> > before bringing him out of the anesthesia, they would put the EEG

cap

> > on him.

> >

> > Meanwhile, in the month it took to schedule this (it's scheduled

for

> > next week) we saw no tics or seizures until this weekend when he

had

> > a 5 second staring episode followed by rapid eyelid fluttering.

> >

> > My husband and I are pretty concerned about anesthetizing him,

> > especially since his symptoms are mild and far between, and bc in

the

> > past he has pretty consistently had bad reactions to prescription

> > meds. Also, I'm not educated as to what an MRI will show and it's

> > fairly unlikely he'll keep the EEG cap on long enough to see

> > anything.

[Guest guest]

All of what you listed are valid concerns, but the ongoing seizures

are worse. I have an 8 year son who has had the video eeg and he did

not have an event and, yes the test results did nothing. it has taken

8 years and we have finally caught the seizures on video EEg. The MRI

and the MEG can correlate the focal point. This is huge. They can

remove this section and possibly give my son a seizure free AND drug

free life.

Foods are important, but not the whole answer. All drugs have a side

effect of some sort and all drugs with the ability to stop seizure

can also create seizures. I have lived it. I am right now having to

live soy free since this is also a cause of his seizures. About three

years ago, he was implanted with the VNS for seizure control. today i

think that this is what allowed his brain to regulate on it own and

for the video eeg to finally see where the issue is that needs to be

addressed.

I know that we all want answers now and that one more week is too

long, but sometimes TIME is on our side and will assist in making the

decisions.

Do not stop the testing. Too important. Your child will feed from

your stress and concern. I have been doing this since my son was 4

months old He is now 8.5 . Never thought i would make it to 8, but

here we are. Bring your own hat or ask the nurse to wrap your head up

too. Play games and distract. The results are too important and can

assist the doctor in deciding which drugs to use based on the type of

epilepsy found. This can decrease the number of drugs experimented

with and make it easier for you and your child.

This is a hard battle, but the tests are necessary. Some of the

anesthesia can affect the seizures and skew the results. Do the best

you can and never stop fighting for you kids.

Do you currently see a local neuro or one at a big center? This can

make a big difference. My son is seen at Children's Hospital in

Philly, PA. Great docs who are really helping. I have been to

Stanford in CA and UC MIND institute in Sac. Interveiw your

neuro and make sure that they listen to you. You are the voice for

your child. Stanford told me 8 years ago that my son would never walk

or talk. He is and has been since 1 years old. THey then told me

that there was nothing they could do for him. Go home and enjoy my

time with him since he would die from a seizure soon. That was the

day i fired them. UC MIND are the ones that okayed the VNS and

did the implant. Today we are considering surgery. This is a long

way from go home and enojy him since he will die from his seizures one

day soon.

Do not give up hope, research your options and ask questions.

Just my experiences with epilepsy.

Jenn