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absence seizures

my 3-year-old son has autism and recently had an EEG that came back abnormal showing spiking in the right temporal region. He has had episodes of "staring spells" which are consistent with absence or petit mal seizures. One neurologist suggested doing nothing. I am concerned about his progress. Has anyone else had any kind experience like this? Any information or advice is greatly appreciated

Comments

RE: absence seizures

Submitted by AmyQ on Tue, 2005-05-10 - 09:46
Are you close to other medical centers? If you are, you should get a second opinion. Drugs may control the staring spells, but they come with side-effects (all of them). It's rare that you get a doctor who actually wants to put off medication.However, you should definitely seek a second opinion. Then, you can weigh out your options.- AmyQ

RE: absence seizures

Submitted by lemon5us on Tue, 2005-05-10 - 11:23

Hi there,

I am the one with epilepsy so I don't know what it is like to have a child with it although my daughter had grand mal with high fever as a baby. I recomend as well that you get a second opinion, it can't  hurt and it might help you understand better. It doesn't sound like the neuro explained things very well to you which is typical of some.

Don't know if this helped.

Lisa

Hi there,

I am the one with epilepsy so I don't know what it is like to have a child with it although my daughter had grand mal with high fever as a baby. I recomend as well that you get a second opinion, it can't  hurt and it might help you understand better. It doesn't sound like the neuro explained things very well to you which is typical of some.

Don't know if this helped.

Lisa

RE: RE: absence seizures

Submitted by Gretchen on Tue, 2005-05-10 - 12:17
Hello and Welcome!I have epilepsy, my son, one of his daughters as well as other family members. That doesn't make me an expert, but I've had a lot of exposure to epilepsy, AEDs (anti epileptic drugs), and medical treatment for seizures, epilepsy. This is only what we've been told but we've all been been told this by multiple neurologists plus the epileptologist whose care we're all under now. It's important especially in the young to stop seizing. Perhaps the goal of epileptic or seizure treatment. Also that the more seizures you have the more seizures you can tend to develop or have. It's harder to bring someone under "control" the longer they've experienced seizures. At least I think that's the message we've all gotten. We all have generalized epilepsy which is the category absence seizures falls under. My grand daughter for instance was diagnosed at the age of 2. She only had nocturnal tonic-clonics when diagnosed. She was fairly easily brought under control with an AED. With growth spurts she'd loose control, need an adjustment in her AED, come back under control but during one of these times it was noticed she had also now developed absence seizures, in addition to tonic-clonics. I've had the same experience. I didn't have absences or myoclonic jerks for at least a year, actually I'm not sure how long, after I was diagnosed. When I was first diagnosed to my knowledge I had atonic drops and tonic-clonics only. I haven't been able to gain control and have now developed many seizure types. Another thought is that a more severe seizure can secondize out of what I call a lesser seizure. For instance I have tonic clonics that usually secondize out of a drop. Most of the time it happens so rapidly it'd be hard for the untrained eye to see or at least normally in less than a minute after I drop if it secondizes it does so rapidly to a tonic-clonic it's hard to see that transition. Also I thought I was having very few absences until I had a VEEG. I found out by this test that I was having many and I was also clustering. Clustering means you're having one after the other, with me at least usually at predictable time intervals. The problem with that? I have less and less return to normal intellect with each absence until I'm cognitively impaired. That's called I have "poor return" or "no or poor rebound" which increases in cognitive impairment with each seizure in the cluster. I'll reflect later and feel like I've "lost blocks of time", at times. Then the problem with cognitive impairment is that often - I don't know when I don't know - if that makes any sense. Then I can't make good judgment about seeking help. I will tend to become overly emotional or extremely sleepy. I topic hop, ramble, my memory starts slipping severely. I have confusion. I've injured myself when impaired but again I don't know how impaired I am although I may realize I am impaired. IOW the whole idea I interpret we've been told is the whole goal of epilepsy is to not seize. I'm always going to ask our doctor this, somehow always forget, but I wonder if the more you seize the more your brain learns how to seize or it becomes easier for your brain to seize. I'n not sure of that, but I THINK that can be true. I remember reading an article on the internet once by an epileptologist out of Rush in Chicago who said and this is a quote "the more you seize, the more you seize", which made an impression on me.I agree with the other posters. I'd get another opinion. It's not unusual for people to have to seek many opinions from many neurologists until they find one that is responsive to their needs. I keep wondering why this problem is so prevalent. I've experienced it too. I don't have that answer though. It seems very strange to me that any doctor who recognizes a child is seizing, who has a positive EEG, is not medicating. I'll be first in line to say AEDs have side effects. For some they're intolerable, and that t'would be me. There are very few choices that I have of AEDs that I can take. For many others they have side effects but they can live with them. Many people have side effects that tend to lessen or disappear after they've been on them awhile. Sometimes an AED has to be tweaked around to make it maximally effective yet tolerable too. My primary AED now out of two I was so sleepy when I first took it I could barely stay awake. I worked with my dosing times with my pharmacist and helped that problem. I've been on it for 6 years now and have several times for several reasons had to change my dosing amounts and times. I just did it again last week in fact to optimize the drug and reduce the side effects. I also seem to have two kinds of absences. I also tend to cluster with them when I have them. So does my son. I can have one kind of absences, I don't know about the terminoloy here I'm sorry, that lasts just under a minute. Those are very noticable to others. I have another kind that also can cluster which lasts just a few seconds - 5-7 seconds is what was caught on the VEEG. What I feel? It's like I was listening to a record and it skipped. I didn't realize I was even having absences, especially the short ones, until another epileptic saw me have a short blink out, and then again it was caught on a VEEG. I still often am clustering with absences and don't know it. If you don't know, a VEEG is a test where there is a video of you being taped at the same time an EEG is hooked up. This is done in the hospital in an EMU. A special unit designed with video cameras, monitors that are being watched at a nursing station, EEGs with read outs which all is continually monitored at this nursing station with specialized staff. A correlation then can be made by what your outward symptoms appear in correlation to what the EEG is doing. It's been an excellent diagnostic tool for us. We had quite a struggle with my grand daughter when she was younger, trying to do a VEEG on her, keeping her hands off of the EEG electrodes when she was younger, keeping her in FRONT of the cameras. The first attempt was dismal. The second attempt she was a little older, they learned more. She and I have also had AEEGs or ambulatory EEGs where at least with us we wear an EEG for about 24 hours, once I did for 3 days, and the information gained is stored in a little box you wear and later analyzed. I've always been surprised how often I seize, don't know it, when having one of these tests.Good luck. I'm glad you posted your question.Gretchen

RE: absence seizures

Submitted by JCPellizzi on Tue, 2005-05-10 - 21:46

My 3 year just started Trileptal 300mg this evening for absence seizures.  We did nothing for a few weeks because it was only happening once a week.  This week it happened twice.  The seizure only happens for a few seconds and he loses muscle control with his left arm and hand.  This is his affected side from his stroke. 

Get a second opinion.  Do research.  Decide what is best for your son.

 

My 3 year just started Trileptal 300mg this evening for absence seizures.  We did nothing for a few weeks because it was only happening once a week.  This week it happened twice.  The seizure only happens for a few seconds and he loses muscle control with his left arm and hand.  This is his affected side from his stroke. 

Get a second opinion.  Do research.  Decide what is best for your son.

 

RE: RE: absence seizures

Submitted by curtisp40z on Tue, 2005-07-26 - 21:22
My 3 year old has been taking Trileptal for 6 months and we had good luck with it up until this week.  He had a major seizure just out of the blue, and some of his lasting effects sure mimic a stroke.  Could you tell me more about your child and his stroke symptoms?

RE: absence seizures

Submitted by LoriG on Wed, 2005-05-11 - 03:53

As the others have suggested, get a second opinion.  My son was diagnosed with atypical absence seizures just before he turned 3yo.  It took eight months and many trials to find that Depakote and Zarontin controlled his seizures.  This qualified him for a 1:1 aide in general ed classroom as OHI.  He has been performing at grade level (we had him repeat 1st) with the help of different dosages of Ritalin and Concerta over the years.

He is 11yo, 4th grade now and has had a great quality of life until this school year, his executive functions were deteriorating and it was difficult to get his gen ed teacher and the principal to see this.  The aide was poorly trained and didn't have a clue that she was to assist and shadow him. 

His psychiatrist suggested to switch the Ritalin and Concerta to Risperdal.  The addition of the Risperdal to the Depakote caused ammonia levels to elevate to 113.  He was delirious and out of control at school, again, the aide was not prepared to handle this.  I have seen some questionable behavior over the years but the levels were never tested and it was managable with behavior modification and a lot of rest.

Due to the med changes, he was hospitalized and after assessments, he was diagnosed with Autism. The diagnosis fits because of the regression and sp/lg delays over the years.  He received clinical OT/Sp early on, so the services have given him the ability to have been this successful.  He is back in school after three hellish months, he regressed over this short period of time by 5-6 years.  He is bouncing back but, it is going to take a lot over the next year to make up.  This is the way it was the first two years after his intial diagnosis.

Parent support like this is one is one of the best places to find some great advice or confirmation on your mother's instinct. I wish you the best. 

As the others have suggested, get a second opinion.  My son was diagnosed with atypical absence seizures just before he turned 3yo.  It took eight months and many trials to find that Depakote and Zarontin controlled his seizures.  This qualified him for a 1:1 aide in general ed classroom as OHI.  He has been performing at grade level (we had him repeat 1st) with the help of different dosages of Ritalin and Concerta over the years.

He is 11yo, 4th grade now and has had a great quality of life until this school year, his executive functions were deteriorating and it was difficult to get his gen ed teacher and the principal to see this.  The aide was poorly trained and didn't have a clue that she was to assist and shadow him. 

His psychiatrist suggested to switch the Ritalin and Concerta to Risperdal.  The addition of the Risperdal to the Depakote caused ammonia levels to elevate to 113.  He was delirious and out of control at school, again, the aide was not prepared to handle this.  I have seen some questionable behavior over the years but the levels were never tested and it was managable with behavior modification and a lot of rest.

Due to the med changes, he was hospitalized and after assessments, he was diagnosed with Autism. The diagnosis fits because of the regression and sp/lg delays over the years.  He received clinical OT/Sp early on, so the services have given him the ability to have been this successful.  He is back in school after three hellish months, he regressed over this short period of time by 5-6 years.  He is bouncing back but, it is going to take a lot over the next year to make up.  This is the way it was the first two years after his intial diagnosis.

Parent support like this is one is one of the best places to find some great advice or confirmation on your mother's instinct. I wish you the best. 

RE: absence seizures

Submitted by smokingtp on Wed, 2005-05-11 - 14:25

In David Suzuki's The Nature of Things, Reefer Madness Two, we learn of mothers in California, who make up a marijuana pablum, for thier child who suffers epilepsy.     As one who has struck down our marijuana laws as unconstitutional in  Canada, can atest to the effectiveness of marijuana

for epilepsy. It is indeed number one, for seizure disorder.  Do not believe what the doctor says about marijuana, since his interests is pushing bad experimental drugs that cause seizures.  If not that, unauthorized psychosurgical experimentation which cause more seizures.

Yours, Terry Parker Jr.

            www.geocities.com/terryparkerjr/

            www.cyberclass.net/turmel/timeline.htm

 

In David Suzuki's The Nature of Things, Reefer Madness Two, we learn of mothers in California, who make up a marijuana pablum, for thier child who suffers epilepsy.     As one who has struck down our marijuana laws as unconstitutional in  Canada, can atest to the effectiveness of marijuana

for epilepsy. It is indeed number one, for seizure disorder.  Do not believe what the doctor says about marijuana, since his interests is pushing bad experimental drugs that cause seizures.  If not that, unauthorized psychosurgical experimentation which cause more seizures.

Yours, Terry Parker Jr.

            www.geocities.com/terryparkerjr/

            www.cyberclass.net/turmel/timeline.htm

 

RE: absence seizures

Submitted by Yakota on Thu, 2005-05-12 - 20:34
Hi. Welcome. I too would get a second oppion. I have TLE. As a child I had the "staring spells." Does your son fall a lot? Just last week my mom told me that as a child I fell and hit my head a lot, noticablly more than my brother. She also said I was like sleeping with a horse, kicking and moving around a lot. (The sleeping "horse" sounds a lot like night seizure to me.) Unfortunately not much thought was given to epilepsy in the early 1960s when I grew up. My case went undetected until I was diagnosed in 2003. I am glad that more attention is given to epilepsy now. In elementary school a common complaint made by all of my teachers was that I didn't pay attention. Often times I would flat out not answer when they called on me. I suffered much because no one ever thought to consider that I might be eptileptic. In regards to your son, hopefully some of what I mentioned might prove helpful. All the best to you. Blessings. Linda.

RE: absence seizures

Submitted by angel_lts on Wed, 2005-07-27 - 06:48

check into omega three fatty acids.

check out my support group too.

Lisa

http://health.groups.yahoo.com/group/EpilepsyApproach/

check into omega three fatty acids.

check out my support group too.

Lisa

http://health.groups.yahoo.com/group/EpilepsyApproach/

RE: RE: absence seizures

Submitted by drewsie on Wed, 2005-07-27 - 12:16
My little brother has autism. When he was younger, he had staring spells. He would stare off at nothing and wouldn't answer to his name or anything. They were associated with the autism, though. It was never suggested that he might have epilepsy. Are any of the staring spells associated with autism, or are they all epilespy? just curious.

RE: absence seizures

Submitted by mexican_fire on Wed, 2005-07-27 - 13:27

HI,

I don't know if there has been adiscussion of Right Temporal Lobe seizures yet.

They can mimic Absence or vise versa.  However, the pattern, that you said was told to you is NOT indicative of Absence epilepsy, it more than likely suggests Temporal lobe activity.  Spiking in either lobe is how they come up with a diagnosis of TLE.  They need to have a particular, and undeniable pattern of 3 per second-spike-and-and-waves, and that is the only [pattern seen for Absence seizures.

I would have him look into this again, becuase both seizure types require very different treatment, even in young toddlers like him.  TLE starts out as early as his age.

Nancy

HI,

I don't know if there has been adiscussion of Right Temporal Lobe seizures yet.

They can mimic Absence or vise versa.  However, the pattern, that you said was told to you is NOT indicative of Absence epilepsy, it more than likely suggests Temporal lobe activity.  Spiking in either lobe is how they come up with a diagnosis of TLE.  They need to have a particular, and undeniable pattern of 3 per second-spike-and-and-waves, and that is the only [pattern seen for Absence seizures.

I would have him look into this again, becuase both seizure types require very different treatment, even in young toddlers like him.  TLE starts out as early as his age.

Nancy

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