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Autism Spectrum Disorders (ASD) Community
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Avatar universal

MY GUY has siezures

My son is 12 and yesterday his eeg indicated left temporal frontal lobe siezure spikes.... we are restarting topamax..... and increasing mellaril.   In the past when he was little, his siezures were very obvious.....  but I think now he is staring and may giggle or burst into tears.... I never realised that these were siezures... but now read an article about Autism Behaviors or Siezure behaviors....
For the past couple of years ,  He has been very anxious about walking down hallways or through threshholds of the school and community areas.... never had this problem until a couple of years ago.  It was very much a struggle to get to eeg room because of the long hallway.... but he was fine after we got there.... same with going from the car into the beautyshop.... but fine when we left.... doesn't want to go to bathroom when we travel.... he will hold it the whole day. He is having a difficult time going into the community.... even to the playground or swimming last summer..... and he loves to swim.

At school he has kicked and been aggressive... I try to tell the school NOT to use the seclusion room.... they say they must because of behavior.... I think this stress may cause stress that might cause behavior that I wonder now may be triggering siezures that create behavior.....  I need more of an education about these siezures.....  I hope that he will get better with medication and will also improve speech and other autistic behaviors......  Anybody what to help me here????? Gracem
23 Responses
367831 tn?1284258944
Y not use the seclusion room?  When stressed, he needs a place to chill, I would think.  Do they use florecsent lights?  Any thing else may be a potential trigger, too.
Avatar universal
The National Autism Society condemns the use of seclusion rooms... as is it frowned upon in mental institutions. and if every used a paitient must be seen by a psychiatrist within 1 hour.... many people have died in such restraints and seclusions.... also if my son is having a siezure the behavior from others around him may build more fear and anxiety that will manifest into more trouble in other areas.....  Why would you punish him for being ill....  anymore than a diabetic that behaves strangely because of an insulin low?  This is demanding something from someone who is experiencing an electrical storm in the brain and holding them accountable for something that they be totally not in control of.   More resent education finds that this type of treatment is barbaric..... Seclusion rooms as well as restraint indicates a failing system of approaching these kids....  Even Nursing homes are NO Longer allowed to restrain old people in beds. Gracem
365714 tn?1292199108
I think my dad may be misunderstanding something in your post.  I'm only guessing he thought a seclusion room was an empty classroom without the florescent lights on. Not the restraints that you describe.

If my anxiety gets terrible from loud noises and overwhelming stimulus, I like to retreat to a quiet room. On rare occasions, I would retreat under a table. I remember when my mom used to take me to clothing stores and shop for hours; I’d hide out in the center of those circular clothing racks. Thinking back it may have been a way to cope with all the bright lights, foot traffic of people, and the noise of the store/mall.
Avatar universal
what I'm talking about is that when they think my son is being "Bad" or dangerous.... they put him in aroom about the size of a closet..... 9X9 with only a light bulb...  Likely florescent... and a small window in the door.   At first it had no padding and if he was having a melt down he was slamming his body against the floor or wall.... this was a "Time out" type of room..... It is really used as they say to protect the safety of him or others.... the problem is ..... they pick very stupid things to fight about with him..... such as him taking his boots off..... then they try to take them off   .... then he kicks at tehm because he wants his boots on... then they put him in this room and keep this stupid fight going on for about 20 min..... I say what is the harm to life and safety if all he wants is his boots to be left on!   In the time he spends in the seclusion room .... he is NOT learning anything!   Except how to be more aggressive and pissed off.   Now I am wondering what if these behaviors were related to siezures and they were fighting him while he was about to be stressed into having more because of all of the fight .....   and behavior that may be siezure related..... I do not think he should be punished for his siezure behaviors....  and he must be very frightened coming out with all of the drama around him. gracem
365714 tn?1292199108
I agree with you, the school is being counter productive. My guess is the more anxious the staff members get, it only exasperates his stress.  Making things very ugly.

I had my fair share of being sent out of the classroom for some reason or another. One of those was because they were studying insects (My favorite subject) and they had me sit out perhaps in fear I would get too excited??? Or I would answer all the questions and not give anyone else the chance??  I don't know, but it made me sad.  They were studying insects for about a week. I remember watchign a movie about fireflies and I was trying to hide in the crowd hoping they wouldn't find me and pull me out, which happened... They were even trying to go so far to control my parents and make them remove anything bug related from our house!  I had my toy bugs taken from me and a tape recorded over of my favorite show "Maya the Bee"!  I think I tried to hide the others to prevent them from being taped over.

In this case I think there was, like yours, a major breakdown and misunderstanding...

The faculty now regret their decisions. I think my case became an eye-opener.  I was doing some reading up on temporal frontal lobe siezures.  I don't think I become unconsious, but I do have problems feeling dazed when faced with too much information. I tend to leave settings hardly remembering a thing... And at times I may stutter over my words which bothers me to no end, not being able to cmmunucate as I have in my head. It's frustrating. I'm feeling dazed right now. Perhaps hunger has something to do with it or bring it worse. Time for lunch.
Avatar universal
Thanks for your input..... do you experience these types of siezures????   Do you giggle? Cry? act aggressive?   Stare?    I only wish my son had the ability to communicate.... but he can not.... only says I WANT___________......   or Echolalic.

My nephew is able to write songs and knows all about JFKennedy.......  he is on the spectrum.   I thank you for your insights.    Gracem
367831 tn?1284258944
Yeah, I misunderstood the seclusion room.  This sounds like Matilda's "chokie!"   But if he has a clue like strange smells or colors or sonm kind of "aura" going on, he could excuse himselt to a safe place away from the classroom.  At autism society conferences, we had what we called a "quiet room"  Just a rented room with refrigerator boxes and low lighting and soft furnature to retreat into when the envirinment got too stimmy.  I think mj liked the quiet rooms a lot.

Yeah, he shouldn't be punished for actions which he has no control.  The school should make reasonable classroom accomodations pursuant to section 504.

At issue is he needs to be where he won't harm others nor himself.  Nothing punative.  
365714 tn?1292199108
I go through giggling and crying fits. Never thought of them as seizures though. Perhaps I'm under the misconception that seizures have to occur while you're not conscious.

As a child, my dad would say I become "slap happy" where I'd be hyper, find anything and everything funny. I'd be giggling, laughing. Usually it would start with a thought or image in my mind that only be funny to me.  One of those triggers as a five year old was imagining a grasshopper like creature spinning on a tiny string.  I'd giggle and find the spinning action amusing. Those around me, you can visualize had ?'s floating above their heads trying to figure out what set me off.

I still find scenes in my head amusing. I've got a variety of characters. Sometimes I may stim and repeat parts of their dialogue to myself a few times.

On the other side, I'd have times where just a minor thing would set me off crying and crying and crying for hours on end... The feeling of being rejected...thought that I'm in a rut and not achieving things, having no one to talk to...and etc and etc... The crying would have to run its course until I eventually got distracted.  In some case I'd get so upset with it not stopping I'd lash out in anger rather aggressively. When it gets to that point I find myself having to force myself onto someone, which may be my grandma.  Just to our great inconvenience these attacks would often occur around 2-3 am in the morning...

It seems since I'm on wellbutrin I'm not having as much of the cry, cry, cry... but I get the more hyper and semi uncontrolled grinning reflex... more like what I experienced as a child. Perhaps with the depression lessened I am more hyper in mind than I was with depression.

I may grin when reading or observing something serious... I think the grin may be my reaction, not an attempt being rude... Though if someone was observing me they'd misinterpret it that way.

I think it may have to do with not being able to fully feel feelings outside my own. Feelings to me are more like observing something from the outside looking in. For example, I am not a parent. I can read about parenting, study parents, and imagine how parents behave based on their behavior. I may or may not create an accurate idea.  I strive for more accuracy as I write and imagine to make things believable.  I may not "feel" the same feelings such as love and sympathy, but I can mimic the behavior and act it out.

I think this may be some of the basis for the many characters some autistics create. In a way, at least for me, it helps me understand the real world, but also detatching the setting enough that I can take my own artistic liberty.
Avatar universal
it is cool that you can give us Neurotypicals a look inside your world..... I think Niles has little comedy scenes in his head and sometimes he just burst into tears..... he does seem to like to cuddle with me.   But he also seems to be very far away from the social world.    Gracem
365714 tn?1292199108
You're welcome. I get great joy playing around with my characters in my head. I set up their attributes, backgrounds, beliefs, etc and then set up scenes and see how they react. Sometimes I get surprized. It's almost like they take a mind of their own at times. But it's all fun and entertaining. One of the characters is a recovering alcoholic. To be as detailed as possible I lurk and sometimes post in the alc forum to enhance the realism of the character.

Sometimes just for the heck of it I imagine them trying to live in our world. I have a feeling it would be quite difficult for them, even more so than an autistic person.

Imagine the attention a human like creature with four arms, two legs, antennae, and an abdomen would attract? Man... :P It's a good thing they don't exist, though I do enjoy developing their personalities. I find their antics (no pun intended ;P) amusing. I sometimes cry when something bad happens to them. They become like real creatures, existing only in my head and imagination. Often I wish they could be real.

Writing and drawing them seems to be the best way to go about that for now. The guy in my avatar is one of my favorite characters.

On a sidetrack, if God or a "god" like creature exists, I wonder somtimes if we are like characters in His Story?  Interesting thought.

Yes it seems like my mind is always busy on some thought process or another, unless I get stressed and in an anxiety attack, then I go into instinct mode.
367831 tn?1284258944
The boots on/off issue reminds me of an issue we faced.  It involved her needing hand lotion.  Her sensory issues rtequired her to use hand lotion frequently.  Her 5th grade teacher insisted on her keeping her hand lotion at her (teachers) desk and mj must walk up there to get hand lotion.  Well, the teacher said mj's frequent trips were disruptive.

Her 6th grade teacher had the obvious solution:  Place her hand lotion on her (mj's) own desk!   Maybe mj can relate more of this herself.  

I have the utmost respect  for the majority of teachers,  but there are a few low-functioning NT's out there.
Avatar universal
I bet you loved the movie "A Bugs Life"! I bet you have written sequels!   But even better maybe your calling is to be a cartoonist or writer of those stories that your imagination creates!   There is a "Writer's Strike" in Hollywood..... but it sounds as if You would fit quite well in that world.  Have you ever met Temple Grandin?  She is quite smart and wrote a book "Thinking In Pictures". She has Autism and is also an Animal Scientist and Speaks at many Autism Conferences.  She says she designs or Engineers things in her head like a movie..... My husband is also a mechanical Designer and does that same thing..... He an Temple Talked at a conference about engineering and she includes his way of thinking as "People Like Us"  or Aspi/ Autistic....  They say that the parent have some ASD Traites.   Many p[eople tell me that Autistic folks have gifts.... My nephew writes songs and can remember details about historical facts..... You seem to be quite creative and can communicate quite well in writing.....   I long for and wait to discover what MY GUY will be gifted at.....   I've seen Autistic folks on CNN that seem to be more disabled than my son.... but still have found a way to communicate with the world.....   especially inner thoughts and some feelings and as you do experiences that you can describe.....  MY GUY seems to only communicate very basic needs.... I really wish I could communicate with him like I do with you..... I'd love to understand what is going on in his head.   gracem
367831 tn?1284258944
She did meet Temple Grandin.  I don't think she made a good first impression of her.  She made some comment at lunch with mj and repeated it in her lunceon speech.  It was very embarrassing.  

Avatar universal
That' interesting..... My impression of Temple would be that she would encourage MJ to capitalize and make money off her imaginative talent for her creative stories that she has going on in her mind....  Temple has lately been promoting Autistic folks finding a rewarding vocation....   Is MJ Autistic or High Functioning Asperger?   She really is a valuable resource..... By the way.... does she have seizures....   I am also on the neurology forum and one of the Dr.... says on 10% autistic have epilesy.... In my readings I thought it was quite common especially in boys.....   Anyway  the area of my son's brain is getting me to hope that I will be able to get a handle on his behaviors if I can gain control of the seizures.   Anyway... It has been interesting reading both forums the last couple of days.  gracem
365714 tn?1292199108
To be honest, though I did enjoy Antz, Bug's life, Ant Bully, I have no intention of making sequels to them... NO WAY! My bugs are my own creatures and have NOTHING to do with those movies. I created my story and the characters around the fall of 1994 and began writing in 1995. Much of the groundwork of my stories I established around 1995-1996, BEFORE bug's life became public.

Sorry to sound ranty, but it does strike a nerve in me when people start comparing my work to those movies... Thankfully it hasn't been so bad lately. I'm not getting "Oh you're copying from Bug's life" comments like I did years ago.  I'll be honest, if any thing from Disney inspired my style, it would be their 2-D animated movies, not the Pixar stuff. The only clear things I took from bug's life was giving my bugs a neck and adding the lower segments of the abdomen. Both changes that needed to be, and I made them my own way.

Yeah it’s a shame with Temple. I'll forgive her. Chances are if I see her again, she'll ask me how my table manners are.  I can't eat neatly if I try.  One reason is because I *hate* any kind of squishy fat on my meat, so I pick it off with my fingers because it works best that way. I was eating broccoli like I did as a kid. I'd imagine it being a tree and I'd bite the top off like a dinosaur from Land Before Time...

Temple said "You eat like a pig!" along with some other comments...  In her speech she said she met some rude lady who ate like a pig during lunch... For the longest time I resented her for having to make mention of it.
367831 tn?1284258944
She's NOS.  Just enough but since she started talking after 3 years, that ruled out AS.  You van read her profile.  She's got some great journal blogs.  Maybe she will post more details about Temple.  

I remember her discouraging the gamers and graphic copmputer programming wonks on the spectrum to get into business programming.   She ruffled some feathers there as this was rewarding for the gamers, or whomever.    As I see it, the verdict is still out on graphic vs business vs number crunching on whaere the jobs/money is.  I did agree with her when she said to bypass the personel office.  Personnel wonks want to put ppl in a room with number two pencils and personality tests.  She mentioned to get a portfolio of your work and try to get straight to the guy with the job opening.  Maybe on the golf course or something, but bypass the personnel office.

Seizures?   Not that I've observed.  She may space out sometimes, but I duuno.
Temple Grandin mentions the Regressive/epileptic type vs the kanner/Asperger type of autistics in hewr book "Thinking in Pictures."  She is more like the Kanner/Asperger.

I knew someone who has a son with Landeau-Kleffner Syndrome.  This exhibits the some of the same symtoms as autism.  You may want to look at this.  AFAIK, it's kinda rare.  I think there are less than 300 cases from when it was identified in 1957
365714 tn?1292199108
When I met Temple I don't recall having a chance to talk about my story or my writings.  Chances back then my story wasn't as well developed. I did carry with me rough drafts of my early works. People gave them favorable reviews back then too. I did have a publisher who was interested, but as a 12-13 or so year old I wasn't ready to part with the story yet.

My tangent:
Yes I did dream of getting it published then like I do now, but I'm glad I hung onto the ideas, because I had a lot of things set up in my story I did not quite understand. As I grew up, my characters grew with me and things I thought of back then suddenly made more sense.  

I'm still torn with myself. I really want my story to be published, but the writing is a never ending process. I'm always thinking of ways to evolve my characters and forming every element of their daily lives.  I'm also trying to figure out if each "chapter" should be chapters in a large novel or made into short stories.  The short story/short chapter book series may not be a bad idea... That way it could permit more illustrations and I'd have plenty of inspiration to go by (I've got a whole lifetime of content to write about) as long as the idea can catch on and market well.

To answer your other question:

I'm PDD NOS. It would likely be close to Aspergers. Grandma is in process of reading her book "Thinking in Pictures" some time I hope to at least read parts of it to say I read it *blush* but in a way I feel like I'm already lving it. From the sounds of it, I can identify with some of the things she writes about but not all of them.

In some aspects I think our autism is different.  I could be wrong, but I think I am more skilled at abstract thinking than she is. I learned much the same as her with using symbols, but I think I've taken to learn thinking processes from life, classes, my mom, theology, etc... Using animated mental video clips can also substitute for some of the mental images.  We both use images in our head, but I also use words.  In her book, she mentions the word "dog" triggers her to think of a specific dog in her past.  Me, I get a random image of a dog. Usually something like a flash card. Last night it was a dalamtion posing as if in a dog show. Sometimes it is a black lab.  It could be a saluki, deerhound, stabyhoun, golden retriever, etc...They are probably taken from images I've seen.  I can revert to memories like Temple and think of the various dogs that I've come into contact, though the memories of dogs aren't usually the first thing coming to mind.

I think in some ways, I may have milder autism than Temple, and other ways I'm more handicapped. For one thing, I doubt I can make it to get a Phd.  I'd get stressed out with the workload.  When I get stressed my mind shuts down. But that's the way autism is... It isn't the same for everyone. I think we each have the same or similar hang-ups, but our ability to adjust to them and cope differs.
Avatar universal
Harry Potter!   What a fantastic Imagination that author had..... and from rags to riches!!!

And each book evolved the characters......   Keep writing..... My nephew writes on poetry.com and he can compose songs.... just for fun....   It is nice  to make alot of money though....  I was not comparing your stories to Bug's Life.... But your interest in Bugs and creative thinking and stories just makes me see that type of potential in you.
And how this can be a gift for you.... and as Temple might say.... a vocation.

Many authors write series of books that carry on the same theme....  How many "Next Generation Star Treks are there anyway???? gracem
365714 tn?1292199108
My imagination goes about a mile a minute. It seems the more I find on the net, the more inspiration I get. (Same with observation from real life) I seem to get several scenes, more than I can write in a single day. I guess it is fun though. I didn't always try to write them down. I'm glad I decided to write just about any idea related to my characters that crosses my head. This is a change I made since 2007. Earlier scenes I'd imagine in my head, but if they didn't fit the chronological order or were about other characters than my main, I didn't bother to write.

I'm glad I changed that. It seems to spark off new dimensions.  To the outside world when I am watching my movies, it looks like I'm just staring blankly at one of my drawings, computer screen or off in space. It could possibly be confused with having a seizure.

I remember in Temple's speeches she'd visualize the corrals the animals would walk through in order to make the transition into becoming food.  She'd visualize the setting from an animal's perspective and see what they see. She could spot things that would upset them and make the process more agonizing. She’d point out those things to the right people and they’d make changes. I guess it's really not much different form what I am doing. What is different is how we use that visual mental imaging and movie making ability.

She relates her imaging ability as video clips. I updated mine to DVD :P  
DVD's give the added advantage of jumping from chapter to chapter, so not only is my analogy my lame effort to keep with the times, but I think it describes how the process works in my head. I don't see my stories in chronological order. I see whatever scenes interest me at the moment. If I grow bored, then I follow a different train of thought and develop a new scene. I also have the option of following whatever character I desire. One of my favorite things to do is imagine the same setting but from different character's viewpoints. It's interesting, really.

There are times I do get dazed. That usually comes with tiredness, stress, over stimulation, and possibly hunger. In the school cafeteria I’d freak people out because I would stare off in a distance with a blank look on my face.
365714 tn?1292199108
If you wish to read some of my works, you can send me a pm and I can send you a link where I keep some of my art. I can't post it here.
Avatar universal
        i am 45 years old   I can barely use my dvd player,  I do not know what a PM is.
I seem to only get going on the computer when I get OBcessed with my son..... then I find a link and I'm afraid to shut down the computer....for fear I may forget how I got through the Maze that got me to this place.   gracem
365714 tn?1292199108
PM is shorthand for personal message. Click on my username on the top of my post where it says: "by MJIthewriter, 1 hour ago"

MJIthewriter is where you're clicking. It will take you to my profile.

Once on my profile, look right where the "mood" is located. You will see "Send Message"

Click. Type your message and verify the image. (type out what letters you see) and then send.
367831 tn?1284258944
The maze on how you got to this place:  
1  one way to get here is type www.medhelp.org clic on forums, then autism
2  another way is add to yopur favorites  I use windows 2000.  Once I get here, I click "favorites" and then  "add to favorites"
3 another way is to drag the left hand picture (its the tiny picture beteewn "Address" and http://www....etc )  in the box that says adderess at the top of internet explorer somewhre on an empty place your desktop.

Theres always about 10 ways of doing something in windows.  If you got a Mac its probably prety much the same.

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