Help in identifying "events"

[pmcdonald8]

Details:
Son, Sam - now 20; infantile spasms at 6 months (ACTH); 3 TC at 6 years (Tegretol); Many TC at 16 years (Keppra); 2 TC at 19 years (Keppra and Zonegran)

We've noticed "events" if you will...
unusual look on his face - eyes open, no stiffness, often tries to talk but nothing understandable comes out, can walk (although may change direction) and understand verbal directives (sit down, come with me, etc.); if seated his legs move from side to side; if he's cutting a steak at dinner he will continue that motion until event stops, doesn't like to be touched....... it lasts MAYBE 30 seconds.

He may have one a week, two a day - no pattern found.

24 Hour EEG shows no seizure activity at time of "event". Neuro said that he saw patterns at other times that he often sees when patients are coming out of or stopping seizure activities (whatever that means).
Zonegran level too high so we have started to reduce it from 500 mg to now 300 mg - Keppra at 1000 mg X2

The other morning I found him sitting at the kitchen counter, confused and very tired... he kept responding "I don't know" to every question I asked... had him lay down on sofa, he was in and out of sleep for 30-45 min. THEN OK except for a headache later that afternoon... (doesn't usually have headaches)... no neck or tongue soreness... no evidence of TC anywhere in house...

I was concerned these were partial complex seizures possibly leading to TCs... Neuro doesn't think they are seizures at all. Said if he didn't know Sam, he would think he was pretending... but totally ruled that out - Sam has intellectual disabilities and is honest to a fault.

Doc continues to reduce Zonegran... could this possibly be drug induced?

Has anyone experienced these types of "events"?

Thanks

 

[Endless]

Hi, Sam. Welcome to the forum!

Here's a link to a list of the different types of seizures:
http://en.wikipedia.org/wiki/Seizure_types

24 Hour EEG shows no seizure activity at time of "event". neurologist said that he saw patterns at other times that he often sees when patients are coming out of or stopping seizure activities (whatever that means).

If your son was having PARTIAL seizures in the frontal or temporal lobe, the electrodes may not have picked it up. It may have been happening too deep in the brain.

unusual look on his face - eyes open, no stiffness, often tries to talk but nothing understandable comes out, can walk (although may change direction) and understand verbal directives (sit down, come with me, etc.); if seated his legs move from side to side; if he's cutting a steak at dinner he will continue that motion until event stops, doesn't like to be touched

.......

It sounded like a complex partial seizure until you said he'd understand verbal directives. Most of the time during CPs people are unresponsive. They may say and do things, but if asked a question they probably wouldn't answer. Automatisms (rhythmic automatic movements) like moving his legs back and forth are consistant with a complex partial seizure.

The other morning I found him sitting at the kitchen counter, confused and very tired... he kept responding "I don't know" to every question I asked... had him lay down on sofa, he was in and out of sleep for 30-45 min. THEN OK except for a headache later that afternoon... (doesn't usually have headaches)... no neck or tongue soreness... no evidence of tonic clonic anywhere in house...

People can get this way after a complex partial or a generalized seizure. Confusion is a relatively common after-effect. There is also a simple partial seizure called daimas vu, where a person doesn't recognize something - where they are, who someone is, what something is, etc. Confusion is just part of the reaction to that seizure. Because it sure is confusing.

Doc continues to reduce Zonegran... could this possibly be drug induced?

Here's a link to the package insert for Zonegran: http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=41764#nlm34084-4
And here's a link to the package insert for Keppra: http://www.naec-epilepsy.org/find.htm

Convulsions are listed as an adverse reaction for Zonegran. You have to keep reading down under adverse Reactions to find it. I didn't see increased seizures as a side effect of Keppra, though it's well known for it's effects on temperment, espeically anger. In here we call it "keeprage."

Your son's case sounds complicated. Is your neurologist willing to refer you to an epi (seizure specialist)? A regional epilepsy center often has the best doctors, equipment, etc. for diagnosis and treatment. Go here to look for one near you: http://www.naec-epilepsy.org/find.htm

I hope the neurologists get this all figured out soon, and your son begins to feel better. Will you let us know how he is doing?

 

[pmcdonald8]

Thanks for the links....

I agree that it looked like complex partial, but although he can't talk or be snapped out of it, he will do as he is told verbally... very confusing.

Pam

 

[epileric]

Thanks for the links....

I agree that it looked like complex partial, but although he can't talk or be snapped out of it, he will do as he is told verbally... very confusing.

Pam

Actually during my seizures I have trouble answering verbally (aphasia) and nobody else can snap me out of it but I can hear & comprehend what I'm being told and physically react.

I think that's quite normal.

 

[Endless]

Actually during my seizures I have trouble answering verbally (aphasia) and nobody else can snap me out of it but I can hear & comprehend what I'm being told and physically react.

I think that's quite normal.

Aha! A type of simple partial. That sounds like a good guess.....

 

[Anita Louise]

Details:
Son, Sam - now 20; infantile spasms at 6 months (ACTH); 3 TC at 6 years (Tegretol); Many TC at 16 years (Keppra); 2 TC at 19 years (Keppra and Zonegran)

We've noticed "events" if you will...
unusual look on his face - eyes open, no stiffness, often tries to talk but nothing understandable comes out, can walk (although may change direction) and understand verbal directives (sit down, come with me, etc.); if seated his legs move from side to side; if he's cutting a steak at dinner he will continue that motion until event stops, doesn't like to be touched....... it lasts MAYBE 30 seconds.

He may have one a week, two a day - no pattern found.

24 Hour EEG shows no seizure activity at time of "event". Neuro said that he saw patterns at other times that he often sees when patients are coming out of or stopping seizure activities (whatever that means).
Zonegran level too high so we have started to reduce it from 500 mg to now 300 mg - Keppra at 1000 mg X2

The other morning I found him sitting at the kitchen counter, confused and very tired... he kept responding "I don't know" to every question I asked... had him lay down on sofa, he was in and out of sleep for 30-45 min. THEN OK except for a headache later that afternoon... (doesn't usually have headaches)... no neck or tongue soreness... no evidence of TC anywhere in house...

I was concerned these were partial complex seizures possibly leading to TCs... Neuro doesn't think they are seizures at all. Said if he didn't know Sam, he would think he was pretending... but totally ruled that out - Sam has intellectual disabilities and is honest to a fault.

Doc continues to reduce Zonegran... could this possibly be drug induced?

Has anyone experienced these types of "events"?

Thanks

Hi my name is Anita, I have been diagnosed with petit mal seizures. Although my husband has noticed that my seizures are changing as well. I talk but you can not understand anything I am saying, cross my arms and rub them through out the
seizure, I walk around but, don't go far. I am going to see a Epileptolist instead of a Neurologist. I feel this is what your son needs as well. Good luck and I am sending up prayers for an answer.