Re: Autism & Epilepsy

[Guest guest]

What age is your daughter? What medication is she taking?

My son is 18 now, but his seizures started when he was 2 yrs of age.

They were mild (petit mal) until he turned 13, mostly while sleeping.

For some reason, his brain activity increased while he was asleep.

They became grand mal seizures at age 13.

I don't know if your neurologist has ordered an EEG. But my son has had

quite a few and has also had the 23-hour EEG twice, which requires a stay at the

hospital. (The 23-hour EEGs he's had at the Miami Children's Hospital where

the staff was great)

He took depakote until he was about 9-10 yrs. old

Then he took trileptal and this year he started taking a combination of

trileptal and topamax. (The dosage of trileptal that he was taking was

so high that his sodium was actually going down, which caused him to

have more seizures. This is why he is taking the combination of trileptal

and topamax now).

Routine blood work needs to be done, especially to determine sodium levels.

All of these medications are supposed to help with the behaviors. It may be

a matter of getting to the right dosage. The seizures will not go away, they will still

happen. But they help.

Don't be afraid to talk to the doctor as many times as needed until you

both figure out the right dosage. You will have to monitor your daughter

so that you can provide the doctor with good info such as days, times of seizures,

length, etc. Also take data as to how sleepy your daughter is after she has taken med,

how long she falls asleep after a seizure, and if she stays awake after one, but

does not move, etc, write it down too.

This may sound like too much data gathering, on top of everything we all

do, but trust me, it will help in figuring out.

Good luck!

Yesmín

Autism & Epilepsy

Is there anyone out there who has an autistic/epileptic child? My daughter started having seizures over Memorial Day weekend and it's been a NIGHTMARE since. I need some guidance...parent to parent. She's on her second medication and she's become a terror. She's gained weight, she's taking off her clothes, she runs around speaking gibberish (she has emerging language, but seems to have forgotten how to use it...hence, "gibberish"). She will not listen to directives and is in and out of awareness. She still has mild short seizures, and due to the behaviors, have had to lower her dose. I would appreciate any input.

Thanks,

B.

[Guest guest]

What age is your daughter? What medication is she taking?

My son is 18 now, but his seizures started when he was 2 yrs of age.

They were mild (petit mal) until he turned 13, mostly while sleeping.

For some reason, his brain activity increased while he was asleep.

They became grand mal seizures at age 13.

I don't know if your neurologist has ordered an EEG. But my son has had

quite a few and has also had the 23-hour EEG twice, which requires a stay at the

hospital. (The 23-hour EEGs he's had at the Miami Children's Hospital where

the staff was great)

He took depakote until he was about 9-10 yrs. old

Then he took trileptal and this year he started taking a combination of

trileptal and topamax. (The dosage of trileptal that he was taking was

so high that his sodium was actually going down, which caused him to

have more seizures. This is why he is taking the combination of trileptal

and topamax now).

Routine blood work needs to be done, especially to determine sodium levels.

All of these medications are supposed to help with the behaviors. It may be

a matter of getting to the right dosage. The seizures will not go away, they will still

happen. But they help.

Don't be afraid to talk to the doctor as many times as needed until you

both figure out the right dosage. You will have to monitor your daughter

so that you can provide the doctor with good info such as days, times of seizures,

length, etc. Also take data as to how sleepy your daughter is after she has taken med,

how long she falls asleep after a seizure, and if she stays awake after one, but

does not move, etc, write it down too.

This may sound like too much data gathering, on top of everything we all

do, but trust me, it will help in figuring out.

Good luck!

Yesmín

Autism & Epilepsy

Is there anyone out there who has an autistic/epileptic child? My daughter started having seizures over Memorial Day weekend and it's been a NIGHTMARE since. I need some guidance...parent to parent. She's on her second medication and she's become a terror. She's gained weight, she's taking off her clothes, she runs around speaking gibberish (she has emerging language, but seems to have forgotten how to use it...hence, "gibberish"). She will not listen to directives and is in and out of awareness. She still has mild short seizures, and due to the behaviors, have had to lower her dose. I would appreciate any input.

Thanks,

B.

[Guest guest]

Hi ,

First let me say how sorry I am for you and your Daughter, seizures are frightening, and often had to control. How old is your Daughter, seizures often surface when hormones come into play. There are a TON of seizure meds out there. My son who is 20 and started having seizures at 18, takes a combo. of Depakote and Lamictil and has been seizure free for almost two years..............still I am always waiting for it to happen again.

The Depakote works well for behavioral issues as well as seizure management, but, of course, everyone is different.

I wish you luck,

Ruth

Autism & Epilepsy

Is there anyone out there who has an autistic/epileptic child? My daughter started having seizures over Memorial Day weekend and it's been a NIGHTMARE since. I need some guidance...parent to parent. She's on her second medication and she's become a terror. She's gained weight, she's taking off her clothes, she runs around speaking gibberish (she has emerging language, but seems to have forgotten how to use it...hence, "gibberish"). She will not listen to directives and is in and out of awareness. She still has mild short seizures, and due to the behaviors, have had to lower her dose. I would appreciate any input.

Thanks,

B.

[Guest guest]



Hi ,

I am currently using Lamictal, & while not autistic (though my children are), there are a couple of things you may want to know. First, lamictal is also used to treat bipolar disorder, so may affect behaviors. Second, one of the side effects is thought of suicide and depression. For me, the side effects wore off, but the first few months were frightening and I was constantly in contact with my neurologist. It does help control seizures though.

Autism & Epilepsy

Is there anyone out there who has an autistic/epileptic child? My daughter started having seizures over Memorial Day weekend and it's been a NIGHTMARE since. I need some guidance...parent to parent. She's on her second medication and she's become a terror. She's gained weight, she's taking off her clothes, she runs around speaking gibberish (she has emerging language, but seems to have forgotten how to use it...hence, "gibberish"). She will not listen to directives and is in and out of awareness. She still has mild short seizures, and due to the behaviors, have had to lower her dose. I would appreciate any input.Thanks, B.