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epilepsy med question - Page 2

post #21 of 35
Thread Starter 
he has had an EEG which showed several seizures. It was 45 minutes long. Thanks for all the other replies, I plan on reading them tomorrow after work. Right now, its time to hit the hay.
post #22 of 35
Quote:
Originally Posted by senmom View Post
I got that, thanks!
You're welcome!

Harpertrance,
I pm'ed you!
post #23 of 35
Quote:
Originally Posted by harpertrance View Post
there is no history of seizures in my family or dh's family. He also has PDD-NOS, speech delay, low muscle tone, and developmental delay - however he is catching up.

Has he had an EEG, cat scan or MRI?
post #24 of 35
Quote:
Originally Posted by harpertrance View Post
even if his muscle tone is getting better with the OT, do you think we should worry about a metabolic issue? He's getting stronger all the time.

I too, have wondered if there were reasons causing the seizures, and I have wondered if I should have more testing done.

What sort of tests should I ask the neuro about ordering? Hes had an MRI which came back clear and the EEG which showed several seizures...
Sorry, just saw this. Am important piece of info is, what part/region of the brain are the seizures coming from? How long did they last? What were the outward signs, if any did you see? Meaning, what does he look like? Do you know when he is having a seizure?
post #25 of 35
Quote:
Originally Posted by harpertrance View Post
he has had an EEG which showed several seizures. It was 45 minutes long. Thanks for all the other replies, I plan on reading them tomorrow after work. Right now, its time to hit the hay.

Was the EEG or the seizure 45 minutes long?
post #26 of 35
Thread Starter 
The EEG was 45 minutes long, and showed several seizures. They affect the whole brain, not sure where they originate, and he has had an MRI which was normal. They last anywhere from a few seconds to a minute or so. Yes, I can tell most of the time when he is having them.

I got the new Rx in the mail today. He had two episodes today, so we will see how this works We have an appt scheduled and we will talk about options for testing then.

I have good feelings
post #27 of 35
Thread Starter 
after a lot of thinking, and worrying, praying, and tossing things back and forth, I decided to not have any testing done, right now.

I want to see how this new dosage works out for him. If after this, he still is having seizures, then I will want to have more blood work and testing done to see if I can find the cause.

He isnt having any regression, or any other symptoms that worry me. I just was worrying myself sick. He is actually doing better at everything, speech, coordination, muscle strength.... So, why am I worrying so much about the breakthrough seizures? A lot of medications need some tweaking at first.

Thanks everyone for the helpful information, though. (i hope it doesnt come in handy)
post #28 of 35
Quote:
Originally Posted by harpertrance View Post
The EEG was 45 minutes long, and showed several seizures. They affect the whole brain, not sure where they originate, and he has had an MRI which was normal. They last anywhere from a few seconds to a minute or so. Yes, I can tell most of the time when he is having them.

I got the new Rx in the mail today. He had two episodes today, so we will see how this works We have an appt scheduled and we will talk about options for testing then.

I have good feelings
How can you tell he is having a seizure....what are the signs/symptoms?

Are you considering another EEG? IMO, it may be helpful to pinpoint/gather more information.
post #29 of 35
Quote:
Originally Posted by harpertrance View Post
after a lot of thinking, and worrying, praying, and tossing things back and forth, I decided to not have any testing done, right now.

I want to see how this new dosage works out for him. If after this, he still is having seizures, then I will want to have more blood work and testing done to see if I can find the cause.

He isnt having any regression, or any other symptoms that worry me. I just was worrying myself sick. He is actually doing better at everything, speech, coordination, muscle strength.... So, why am I worrying so much about the breakthrough seizures? A lot of medications need some tweaking at first.

Thanks everyone for the helpful information, though. (i hope it doesnt come in handy)
How are things going? I have been thinking/wondering about you.....
post #30 of 35
Just wanted to send hugs. I have also decided not to do any metabolic or genetic testing on my dd right now, though there is most likely something serious going on (she has multiple lesions or "white spots" in the right hemisphere of her brain). However, for us the main focus right now is finding the right med for her and getting the seizures under control. It's like, one thing at a time.

I've heard that ASD children usually have a 25% chance of also having seizures. So maybe that is what's going on?

I hope the meds start working for him soon. We've had to try a lot before we found one that works. In fact, we're STILL looking for one that works. In my experience, they don't stop the seizures completely, but do greatly lessen them.
post #31 of 35
Thread Starter 
hey everyone, just wanted to update since being on the new dosage weve had one seizure and none since then Yaaaaay!

Im sure his neuro wants to do another EEG, I just dont know when. His first EEG was so traumatic on him, i dont want to make him go through it again any time soon unless we HAVE to. He cannot STAND being held or strapped down. And signs and symptoms of him seizing are a blank look, and he falls over, usually he will wet himself. Other times he does the same thing and he will start to twitch, not his whole body, just parts, like hand, or arm.
post #32 of 35
Why are they strapping him down for an EEG?! He should be asleep - sleep deprived and/or sedated so he doesn't wake up. I would seriously ask about that. He may be strapped down for a CT scan..but even then, for MRI and CT they can still sedate him. These tests aren't fun, but they certainly don't have to be traumatic.

What you are describing actually doesn't sound like absence (petit mal) seizures, but partial/partial complex or focal seizures. These seizures are focused to one specific area of the brain usually (such as the temporal or parietal lobe) and can cause exactly what you are describing. Seizures like grand mal or absense are called general seizures because the electrical impulse goes through the whole brain (vs. one little area).

Anyway, I'm glad to hear he's doing better!
post #33 of 35
I'm glad to hear he is doing well.

Quote:
Originally Posted by 3_opihi View Post
What you are describing actually doesn't sound like absence (petit mal) seizures, but partial/partial complex or focal seizures. These seizures are focused to one specific area of the brain usually (such as the temporal or parietal lobe) and can cause exactly what you are describing. Seizures like grand mal or absense are called general seizures because the electrical impulse goes through the whole brain (vs. one little area).
Do you think he is having several types of seizures? My daughter has absense seizures and focal seizures.

Also, my daughter has never been strapped down for an EEG. For the short EEG she was asleep 1/2 the time and awake 1/2 the time. For an extended EEG she is awake and asleep on her own schedule - although in the hospital.
post #34 of 35
Thread Starter 
they tried to sedate him and he was sleep deprived but he managed to stay awake. They didnt want to put him all the way out, just make him tired. But he fought it.

And the EEG showed he was having discharges from his whole brain according to the neuro. He does have a lot of absence seizures. Those are the main types he has. (well not since hes started the medication anyway) He just gets a blank look over his face, and spaces out.

ok sorry this is rushed, gotta go, kiddos screaming!
post #35 of 35
Some neurologists do not want to use sedation because it can interfere with the brain enough as to not get an accurate picture of what's going on.

Also, we've used sedation twice and it didn't work either time so now we just hold him down.
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