Re: EEG Spikes and autism

[Guest guest]

My son used to get seizures since day 1. Now he is 2yrs 3 months and has been on

meds since he was 1 week old. In December it will be 2 yrs that he's seizure

free yet still on meds. Now I'm told he has signs that he's Autistic ...

Basically if ur NOT happy get a 2nd, 3rd opinion we as GREAT MOMS we know our

kids... GOOD LUCK FRIEND....

--- Original Message ---

Sent:Wed 10/29/08 9:56 pm

To:Texas-Autism-Advocacy

Subj: EEG Spikes and autism

My son had an EEG and had spikes in his pattern. However, a doctor

told me that it has the potential to cause an epilepsy seizure,

however, it is not an epilepsy seizure. I asked about medication, and

the doctor said that if he has never had a seizure he doesn't need a

med. My fear is, if their is a possibility that he is having seizures

while he is asleep, why not give him antiseizure meds? Why wait until

he has a seizure? I know he has the staring seizures, but the doctor

discounted that.

Should I find another neurologist who will give him meds?

[Guest guest]

u don't want him on seizure meds unless absolutely necessary!

EEG Spikes and autism

My son had an EEG and had spikes in his pattern. However, a doctor told me that it has the potential to cause an epilepsy seizure, however, it is not an epilepsy seizure. I asked about medication, and the doctor said that if he has never had a seizure he doesn't need a med. My fear is, if their is a possibility that he is having seizures while he is asleep, why not give him antiseizure meds? Why wait until he has a seizure? I know he has the staring seizures, but the doctor discounted that. Should I find another neurologist who will give him meds?

[Guest guest]

Are they that horrible if he is epileptic? I don't understand. Does

it do something adverse to them? He is such a sweet little boy and

is so gentle. He doesn't have any behavioural issues. What am I

missing? Help!

>

> u don't want him on seizure meds unless absolutely necessary!

>

> EEG Spikes and autism

>

>

> My son had an EEG and had spikes in his pattern. However, a

doctor

> told me that it has the potential to cause an epilepsy seizure,

> however, it is not an epilepsy seizure. I asked about medication,

and

> the doctor said that if he has never had a seizure he doesn't

need a

> med. My fear is, if their is a possibility that he is having

seizures

> while he is asleep, why not give him antiseizure meds? Why wait

until

> he has a seizure? I know he has the staring seizures, but the

doctor

> discounted that.

>

> Should I find another neurologist who will give him meds?

>

[Guest guest]

I would not find him another neurologist just to give him meds but for another opinion. If he is staring then that very possibly can be seizures. From what I know about spikes on EEGs is that it shows a tendency for seizures but unless he clinically is having seizures most Drs won't treat him. I have been told that many of us may have this sort of EEG and you never know it unless you have a seizure and then an EEG. So from what I know what he is doing makes sense. The part I question is whether the staring you see is seizures. I would highly recommend you see Dr Angus Wilfong in Houston at Texas Childrens in Houston. He is a pediatric epileptologist so he is a neurologist who only deals with seizures. He knows his stuff.

in Austin

-----Original Message-----From: Texas-Autism-Advocacy [mailto:Texas-Autism-Advocacy ] On Behalf Of CookieSent: Wednesday, October 29, 2008 9:56 PMTo: Texas-Autism-Advocacy Subject: EEG Spikes and autism

My son had an EEG and had spikes in his pattern. However, a doctor told me that it has the potential to cause an epilepsy seizure, however, it is not an epilepsy seizure. I asked about medication, and the doctor said that if he has never had a seizure he doesn't need a med. My fear is, if their is a possibility that he is having seizures while he is asleep, why not give him antiseizure meds? Why wait until he has a seizure? I know he has the staring seizures, but the doctor discounted that. Should I find another neurologist who will give him meds?

[Guest guest]

This is the information I was looking for. I did have one doctor who

told me he needed meds, and we hesitated, and went for a second

opinion, however, this doctor totally discounted the situation when

we told her he is fading off and staring. We got really scared on the

staring part because you can't get him to acknowledge you. You can

run your hands in front of his eyes, and he never flinches, so

something is going on.

I will investigate this doctor. Thank you for the recommendation.

>

> I would not find him another neurologist just to give him meds but

for

> another opinion. If he is staring then that very possibly can be

> seizures. From what I know about spikes on EEGs is that it shows a

> tendency for seizures but unless he clinically is having seizures

most

> Drs won't treat him. I have been told that many of us may have this

> sort of EEG and you never know it unless you have a seizure and

then an

> EEG. So from what I know what he is doing makes sense. The part I

> question is whether the staring you see is seizures. I would

highly

> recommend you see Dr Angus Wilfong in Houston at Texas Childrens in

> Houston. He is a pediatric epileptologist so he is a neurologist

who

> only deals with seizures. He knows his stuff.

> in Austin

>

> EEG Spikes and autism

>

>

>

> My son had an EEG and had spikes in his pattern. However, a doctor

> told me that it has the potential to cause an epilepsy seizure,

> however, it is not an epilepsy seizure. I asked about medication,

and

> the doctor said that if he has never had a seizure he doesn't need

a

> med. My fear is, if their is a possibility that he is having

seizures

> while he is asleep, why not give him antiseizure meds? Why wait

until

> he has a seizure? I know he has the staring seizures, but the

doctor

> discounted that.

>

> Should I find another neurologist who will give him meds?

>

[Guest guest]

Meds for seizures...I was in a similar postion with my son. He was having seizures but the EEG was not too abnormal. The dr gave me the option of watching him or putting him on meds. I have many students on seizure meds...it slows them down, makes them sleepy, and some other negative side effects...so I chose to watch him and I also sought out another Neurologist's opinion.

EEG Spikes and autism> > > My son had an EEG and had spikes in his pattern. However, a doctor > told me that it has the potential to cause an epilepsy seizure, > however, it is not an epilepsy seizure. I asked about medication, and > the doctor said that if he has never had a seizure he doesn't need a > med. My fear is, if their is a possibility that he is having seizures > while he is asleep, why not give him antiseizure meds? Why wait until > he has a seizure? I know he has the staring seizures, but the doctor > discounted that. > > Should I find another neurologist who will give him meds?>

[Guest guest]

My son has battled "seasonal" seizures for 6 years now. I say "seasonal" because for him I belive there is a viral trigger that sets them off....

We've been on all kinds of seizure meds - with all kinds of side effects.

And I am very anti-medication - so that was a hard process to go through, trying to help him without drugging him.

However - this last round of seizures last year - Dr. , our Neurologist, prescribed Zonisimide. Generic of Zonegran I believe. Anyway - that has been the first and only medication where we didn't see a negative side effect. The positive side effect was that it did have a "focusing" effect somewhat like an ADHD medication but without the drowsiness, loss of appetite, stomachache, etc.

I'm really quite pleased. It has done well with the seizures, (he hasn't had any) and it has calmed my son down without the "drug" effect. More clarity and focus for him.

Anyway --- just sharing!

M. GuppyMy autism journey isn't about waiting for the storm to pass, it's about learning to dance in the rain.... Texas Autism Advocacy: www.TexasAutismAdvocacy.org

"There are some aspects of a person's life that we have no right to compromise. We cannot negotiate the size of an institution. No one should live in one. We cannot debate who should get an inclusive education. Everyone should. We cannot determine who does and who does not get the right to make their own choices and forge their own futures. All must."

Subject: Re: Re: EEG Spikes and autismTo: Texas-Autism-Advocacy Date: Thursday, October 30, 2008, 5:27 AM

Meds for seizures...I was in a similar postion with my son. He was having seizures but the EEG was not too abnormal. The dr gave me the option of watching him or putting him on meds. I have many students on seizure meds...it slows them down, makes them sleepy, and some other negative side effects...so I chose to watch him and I also sought out another Neurologist' s opinion.

[Texas-Autism- Advocacy] EEG Spikes and autism> > > My son had an EEG and had spikes in his pattern. However, a doctor > told me that it has the potential to cause

an epilepsy seizure, > however, it is not an epilepsy seizure. I asked about medication, and > the doctor said that if he has never had a seizure he doesn't need a > med. My fear is, if their is a possibility that he is having seizures > while he is asleep, why not give him antiseizure meds? Why wait until > he has a seizure? I know he has the staring seizures, but the doctor > discounted that. > > Should I find another neurologist who will give him meds?>

[Guest guest]

My son has a seizure disorder and was put on seizure meds (tegretol)

for a few years with very bad results. All seizure meds carry a lot of

side effects, even the most common ones can be quite debilitating. My

son suffered nausea, dizziness, slept most of the time after taking

each dose, and he was groggy and cranky when he was awake. Whenever he

got used to the med and would be more alert and with it, the doc would

up the dose to a more therapeutic level and we would start the cycle

all over again. He regressed during that time and I was at my wits end

with his condition. Besides these 'common' side effects, I worried

about the 'rare' side effects that included aplastic anemia (a fatal

condition) and sterility. (all these were written in the drug insert

for tegretol)

Putting my son a gluten free, casein free diet, giving B-6 and

magnesium, and other supplements was the answer to stopping the

siezures for him. (I researched and found that giving him vitamin E, and

L-carnitine help with protecting his brain from seizures).

Food allergies and intolerances can cause seizures, it might be a good

idea to get tested for food allergies and figure out what your son has

a problem with.

Nagla

>

> My son had an EEG and had spikes in his pattern. However, a doctor

> told me that it has the potential to cause an epilepsy seizure,

> however, it is not an epilepsy seizure. I asked about medication,

and

> the doctor said that if he has never had a seizure he doesn't need a

> med. My fear is, if their is a possibility that he is having

seizures

> while he is asleep, why not give him antiseizure meds? Why wait

until

> he has a seizure? I know he has the staring seizures, but the doctor

> discounted that.

>

> Should I find another neurologist who will give him meds?

>

[Guest guest]

My son had his first seizure a year and a

half ago, just before his 9th birthday. He now has intractable

epilepsy with episodes of status epilepticus.

Most neurologists will tell you that

seizures beget seizures, meaning if an individual has had one seizure, there’s

an increased chance of a second seizure, and if a child has had a second

seizure, there’s an even greater possibility that more will follow.

Despite that, most neurologists in the Houston

area tend to take a conservative approach in “treating the EEG,”

recommending treatment only if there are seizures, not just an abnormal

EEG.

I have always wondered if we had started

some kind of treatment for seizures when my son first had an abnormal EEG at

the age of 4, could we have avoided this progression into intractable epilepsy?

I guess I will never know, but if I could rewind the clock, I probably would

have sought out more opinions from a variety of neurologists. BTW, based

on what we have heard from other parents and doctors, UT (Memorial-Hermann)

seems to have the reputation of being a little more aggressive about the

treatment of epilepsy than Baylor (Texas Children’s Hospital).

My son is on the ketogenic diet, a

high-fat, low-carb, low-protein diet for the management of epilepsy. It’s

a difficult diet. Calories are restricted, and foods are all weighed to

the nearest gram. It induces very high levels of ketosis, and it can have

really bad side-effects. (It’s the diet in the movie “First

Do No Harm”) There are a lot of kids on the Modified Atkins Diet,

which is much easier to manage, but still induces pretty high levels of

ketosis. There’s also the low glycemic diet, which has also been

shown to reduce seizures.

The low glycemic diet is actually a

healthy and palatable diet, so I don’t know why you couldn’t try it

to see if it could help normalize your child’s EEG.

Most of the research on the ketogenic diet

and Modified Atkins Diet (MAD) has come out of s Hopkins

Hospital. You’ll

see Dr. Kossoff’s name on a lot of that research. The research

on the low glycemic diet was led by Dr. Thiele at Harvard Medical

School.

Geraldine