Seizures

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My 10-year old son was recently diagnosed with AS. About 1 year ago, he had a seizure.

Since the seizure, the doctor who evaluated him, etc., said that his shows "spikes" and that he is therefore prone to seizures and should be on medication.

I did research on the medication he was prescribed, and there are some serious side effects. So after doing a lot of my own research, I decided to wait and see if he had another seizure. It's been almost a year and he hasn't had another seizure.

I recently read about someone with AS having seizures. I am curious if there is a relationship between AS and seizures.

At the time the doctor diagnosed him almost a year ago, we weren't seriously looking into AS yet, although I was suspicious at the time. Besides, back then I didn't think about a connection between AS and seizures.

Yes, I think I can help you - somewhat. I am a HFA. I am not, however, definitively diagnosed with epilepsy at all. At most, I have petit mal seizures due to my enhanced sensory modality. Often, when I have a meltdown, this petit male seizure-like activity is apparent yet still quite subtle. I cannot know your son's health background, of course, or guess. But, if he's been seizure-free for some time, one variable is that due to treatment (for his AS) he's faring better - unknown.

You are precisely right! AS/HFA conditions are often comorbid with epilepsy or, in my case, 'quasi-epilepsy (ie: petit mal seizures). I also would be leery of anti-seizure medication, especially if he may not need the drug since his symptoms have abated.

I take Clonazepam (you can check this on Wikipedia for info). Anyway, Clonazepam is both an anti-anxiety, which I need (I'm a stressed out PhD student and high-strung anyway) plus I do experience serious sensory overload, which leads to the next therapeutic property of Clonazepam: mild anti-seizure! This medication has helped me a lot without the deletorious side-effects. I take 1 mg 2X daily.

Maybe you could ask your son's doctor if this might be appropriate, or at least a consideration? Sometimes doctor's use the 'trial and error' method, which is ok. Clonazepam would likely be much more agreeable for your son too. The 'hard-core' epilepsy drugs (NOT indicated for me) can be, well, scary. Just curious, has your son ever had an MRI? This could be a good diagnostic tool if he's only marginally effected with epilepsy.

But, good question: Autism is associated with epilepsy but not 1:1. Further, it's important to consider what might appear as a petit mal seizure may just be manifestations of the autistic condition itself, NOT epilepsy. A good idea, to monitor him, would be go keep an informal journal about seizures (or simply 'seizure-like' activity - whatever the cause) to show the neurologist.

Good luck! Let us know what you/he/your doctor decide &/or if Clonazepam would be a consideration. Clonazepam helps my meltdowns some; I still have meltdowns though.....sigh. Does your 10 yr old son have meltdowns with his AS? This is a correlation with epilepsy, certainly. Stress, for me, makes EVERY symptom worse, plus I am very bad at sleeping (I tend to forget when I'm deeply entranced with a project, for instance). Stress can exacerbate (mild) epilepsy to some degree too.

I'm wondering if he had some kind of "melt down." When I researched seizures, apart from AS, I learned that a seizure can be precipated by lack of sleep, not eating correctly, an emotional event, and the lights from a video game. Not all at once, just that any of those conditions could precipate a seizure in one who is prone.

That day, my son had played video games for about 12 hours. I don't remember if they ate, but knowing my son, he at least ate junk food. I found out (later) that he had not had enough sleep during the previous 3 days. Then, at the end of the day of playing video games all day, he and his cousin had watched a movie that was scary. He came and got into bed with me, because he was scared, and suddenly I was awoken to his body jerking. You can guess from there the rest of the events.

I wonder now, if he does now in fact have AS, if he had had a meltdown. I think the emotional event was being scared.



I'm glad to hear that this is possible. Something to look into and talk to his doctors about.



He does in fact have a lot of anxiety. For instance, he can't ride in the back of the car because of a fear of monsters. Actually, he's afraid of a lot of things. Very intelligent boy, but lacking in rationale.



Yes, he had an MRI or something like that. I forget now what it was called. We have a picture of his brain, and some print-outs. Like I said, the doctor said it shows spikes, which is supposed to be an indicator of possible future seizures. Except that I did research that showed that often children will have a seizure at his age because the (forgive me, I did this research last December and don't remember it exactly now) ends of the brain nerve cells haven't developed some plastic coating that eventually develops, leaving them predisposed to seizures if the child is in some weakened state: lack of sleep, emotional event, hungry, etc. I researched that just one seizure doesn't mean automatically that that person is going to have additional seizures.



How do you know when a seizure is just a manifestation of the autistic condition, as compared to someone who is merely prone to seizures?



By any chance would a melt-down be something like an emotional event making your brain hurt? As if you have a vise around your skull, squeezing it?

My son also has an extremely difficult time sleeping.

Do you think that having seen a T.V. show that was scary could cause stress, resulting in a seizure?

And btw, I understand that you are probably not a doctor ( I haven't looked at your profile yet), and I'm not taking any of this as advice, etc. (Sorry, I'm a lawyer, and I don't want anyone to be afraid to talk to me.) I understand that I have to do my own research and talk to our doctors.

Just that the doctor didn't make this connection, and fortunately, I found someone's blog on this forum who talked about having had seizures.

Thank you for responding!

LOL, you're a scientist/chemist, but I still won't sue you!

Yes, I'm a scientist/chemist (PhD student now) - not a medical doctor. I will not hold it against you that you're a lawyer

Anyway, about your questions! There is no real definition of a meltdown. For me, I seemingly have a 'saturation point,' I become really stressed (many factors), tired, sensory overload, etc. Then, the next slightest occurrence will trigger a meltdown, while distinct from an epileptic seizure there is some evidence this may be partly related to a petit mal. A meltdown is like a combination of hysteria, dissociative state, tantrum (minus the temper), hysteria, panic attack, petit mal, etc. I HATE meltdowns. This is unique to autism....sigh.

I can tell you with certainty that if he's watching video games (12 hours! oh no!), not sleeping well, emotional event, junk food (can't help matters), etc. this looks like a meltdown waiting to happen. For me, I am really sensitive to 'endless-loop' screensavers, fluorescent light (I feel the strobe at ~ 60 Hz), white noise. These can be triggers! Especially when I'm hovering at that saturation point. Your son must be anxious since if this sort of thing (seizure? meltdown?) is occuring his limbic system will be seriously taxed - STRESS. He's only 10 so his neurological system is not yet developed fully anyway. Autistics often lag up to 3 years behind neurologically (I just read this - uncertain source). Myself, whilst fully an adult, I have a 'jagged' maturity level still - I'll bet your son will too. (It's ok, maturity is way overrated).

Your son is intelligent (as per your post - most HFA/Aspies are!) but I wonder about being 'lack of rationale.' The defining feature of autism is lack of Theory of Mind. This is precisely WHY I am a strong scientist with an analytical mind, but it's a different way of being/thinking. You may want to check into this - it's interesting too.

The 'plastic coating' on his neural cells is a mylein sheath, which acts like insulating for the neuron. If this should 'short out' a seizure-type episode can occur. But, about your question - autistic condition or seizure? I don't know.....maybe ask your neurologist. There is a correlation though.

When I have a meltdown my brain doesn't hurt physically, but I am exhausted afterward and it's just rough. I would definitely be cautious about video games (visual stimuli), TV, etc, plus what I listed for me.

I do have a wonderful new thing that does help. Autistics uniformly need/crave 'deep pressure.' (Read Dr. Temple Grandin's book(s) - she is a HFA and very inspirational). Anyway, I have a weighted blanket which is very comforting to offset sensory stress. I bought mine from www.weightedblanket.net This really helps - there's instructions on their site about weight, texture too. I sleep with mine and sometimes use it during the day.

Separately, I use a digital metronome with a visual pendulum to help pace myself so I'm not thinking too fast (big problem). I do forget to sleep. My doctor has me use an alarm clock to remember to sleep!

I do not like taking medicine, but if it helps - do it. Good luck. Say hi to your son from the HFA/Aspies on the Wrong Planet. There is a kids forum on Wrong Planet. I'm sure he could make friends and share with other Aspie kids. Hope he feels better. For you, there is a Parent's forum too. I'm not a parent but there are some great parents on WrongPlanet who can answer virtually anything - they've done it.

Let us know what works....

Now, I must sleep. I teach lab session early in the morning.

First, Fractal, I'm glad to have found you. Or, maybe you found me. Either way, you are so smart and caring and I am really appreciate that you took time out of your busy day to respond to my questions. Not just once, but twice!



I have done a lot of research on both AS and seizures. Why did I not see anything about an association between the two before now? If you don't know, ignore this question. Maybe someone else can answer it.



In self defense (and I hate being in self-defense mode, and I realize that you are not attacking me, etc.), it was Christmas last year. I have 5 kids. Well, they are not all kids any more. My kids are 29, 25, 20, 13 and 10.

Last Christmas, my 29-year old came out to CA from UT with HER 5 kids, and her oldest son and my son played video games this one day for 12 hours. This is so out of the ordinary. My daughter is more strict than I am about video games. I think she limits to 1 hour per day.

But this one day in particular, we let the two boys (my 10 year old and her 11 year old (yes, we should be on Jerry Springer) play all day, while we ran around and shopped and whatever. The boys were having so much fun.

Me and his dad share him 3 days on, 3 days off. I found out later that his dad had let him stay up late (not blaming, just explaing) for the prior 3 days with friends. I found out that they played a lot of video games and didn't get enough sleep. (I'm also giving you this information so that you can say, "Holy crap! No wonder he had a seizure!")

With the bad diet (also not the norm), the huge T.V. screen (I think it's 62"), lack of sleep, 12 hours of video games, I think if he is an Aspie, and based on what you say, it was inevitable that he would have a seizure.



I agree with you. I don't understand this whole thing, yet. It's only been recently that I decided to take up AS seriuosly. When I thought it was just me who had it, I sort of dabbled in it to see what it was about, and then I let it go. No big deal. In fact, I joined this forum last June I think it was, but I didn't start posting until just recently because I really want to understand it, because of my son. He's really having trouble in school.

I figure that the more I understand it, the better I can help him. He's so smart. He wrote a book for school last year, when he was 9. Actually, he wrote about 10 pages or so. When I first saw this bunch of papers in his handwriting on the table, I picked it up and started reading it, expecting only to read something that would make any momma proud of her son.

What I read was so good that I asked him if he copied it from another book. I asked his dad about it, and even his dad, who is an NT said that yes, Tristan wrote it, and that it was good.

My current husband's daughter accidentally picked it up, I found out later, and she's 17. She thought it was really good.

I would like to give my son to someone who can help him be the best he can be, given the way he is, because I hate sending him to public school to be bored day after day.

Sorry for going on and on.



I think it's enough for me so far that he hasn't had another seizure since the one he had last December. I think that there is a correlation, too.



I think you are wonderful. I'm going to introduce my son to WrongPlanet.

From the bottom of my heart, thank you.

I'll look for the books. By any chance, do you have an easy-to-reach link for a weighted blanket?

As someone who is diagnosed as being epileptic, I can definitely agree with the fact that stress is a major part of my seizures (both grand and petit mal). In fact, about 90% of my seizures are stress related. My medicine (DepaKote) helped, but also made my GI tract revolt a lot of the time, so I learned decompression techniques (deep breathing, miniature water fountains, etc.) as an alternative treatment. These techniques helped a lot and I have not had a full-blown seizure in almost 3 years!

it is possible for children to have seizures who are not epileptic. i had a few seizures when i was younger, had all the epileptic diagnostic tests & nothing ever showed up.

i used to faint a lot as well, but as i regained concioussness i would go into a panic attack, so quite often people around me would percieve this as being a lot more serious than it was. the other problem would be that people would crowd round me as they were concerned, but this would just make me panic more!

did your son have any tests (e.g. EEG) or did the doctor just recommend the medication on the basis of what he was told?

is it possible for you to go back to the doctor & discuss whether the medication is necessary or not?

Amhealy: It sounds as if you are an excellent parent. My intention in making this post is to share with you some of my own experiences in hope that I can support your parenting (since I am one too). If at any point the post sounds like anything different, please associate that with my lack of social tact and the fact that I am sharing some things about myself that I wish I had handled differently.

I am a 45 year old PhD physicist. I didn't know anything about AS until 4 years ago when one of my sons was diagnosed with it, however, I know a lot about seizures (although not as much about the science of it as LabPet seems to). I have seen information that suggests that AS is linked to a greater likelihood of having seizures.

I had my first seizure at age 17. At that point the doctor prescribed dilantin for me, I took it for a week, broke out in a rash and stopped taking it. At age 19 I started having seizures every 4 to 6 weeks. I was proud of my intellectual capabilities and since my social skills were poor, I had also staked my happiness on my intelligence. I told people "I'd rather have heart disease than a seizure disorder".

FIRST POINT: don't be afraid of a seizure disorder and don't be afraid of medications that treat them

My fears allowed me to go on a 20 year adventure where I had a number of diagnostic tests, dealt with a lot of neurologists and took at least 5 different medications, but still because I didn't want to have a seizure disorder, I didn't do what I needed to. For those 20 years I had seizures every 4 to 6 weeks. I have what is known as Partial Complex seizures or Temporal Lobe seizures. What this means is that I have all types of different physical responses when I have a seizure. These can include

- typical motor seizures where I loose consciousness
- motor seizures where I don't loose consciousness
- memory loss seizures where I don't experience any motor problems and can in fact continue tasks (like teaching, riding a bus or taking the GRE) but at a later time I will not recall what I was doing or how I did it

I often know when I am susceptible to having a seizure or when I am actually going to have one through a number of different manners

- motor tics
- precognitive instincts associated with
- deja vu (ala, I've been in this circumstance before and the last time I was here I had a seizure)

Different neurologists have told me that the events that indicated my seizure likelihood were in fact seizures themselves that just didn't generalize.

SECOND POINT: Seizures have a wide range of physical symptoms and it is important for the person who is having a seizure problem to know this so that they can more clearly communicate with their doctor what is going on. (Yes, I know that doctor's should ask all the right questions, but neurologists can sometimes strictly go to the prescription page)

I had a number of MRI's, and cat scans which were all normal and a number of EEG's some of which were normal and some which were not. Since my scans were normal, doctors suggested that I probably had a scar on my brain which was too small to see (a logical conclusion since I had played high school football, rolled a car and had stitches in my head 3 times). Many neurologists that I saw during that 20 year time period performed no diagnostic tests on me, they simply listened to my history and then asked me what medication they should prescribe. My final and best neurologist informed me that if I had a desire to deal with my disorder in a surgical fashion, he would check me into the hospital, hook me up to a 24 hour EEG and remove my meds. If I was to have a seizure while on the EEG it would give them a lot more info concerning where my seizure focus was located. I don't have insurance and no desire for brain surgery so I haven't taken him up on that.

THIRD POINT: Diagnostic procedures for seizure disorders are not ideal and neither are neurologists. It is important for a patient to have a basic understanding of the diagnostic/treatment process so they can help in guiding it.

After having seizures for 20 years I was in a position, because of a move, to need a new neurologist. After listening to my history, he suggested that I take dilantin, the medication that I had taken years previous. I was doubtful, but did as he suggested. I broke out in a rash, that cleared up in 2 weeks and was seizure free for 16 months. I had a seizure then and he recommended that I take Keppra as well as the dilantin. He recommended 2000mg a day of the Keppra, but due to a mixup on my part I only took 1000 mg. For the first week on Keppra I was totally bombed and unable to work, but then my system adjusted to it and since then I have been seizure free (except on the few occasions that I have forgotten my medicine). I continue to take only 1000mg of Keppra, rather than the 2000mg the doctor recommends. The Keppra has affected my short term memory which used to be excellent, but now is only average. It also had a relational side effect, in that before taking it I processed all of my ideas internally and now I really prefer to process my feelings and ideas by talking with others (I blame my long posts on that).

FOURTH POINT: Antiseizure meds can have side effects some of which go away after some time. The extent that one experiences side effects depends on the dosage which is specific to each individual. One has to be responsible to himself to make sure he takes only the amount of medication needed, since doctors don't have enough information to make all the decisions regarding efficacy vs. side effects.

I have had one child who has had a seizure and I can say that I haven't immediately determined that he should take seizure meds. He is 19 so a lot of that is his decision anyway. I do encourage you to continue to be investigating seizure conditions and treatments. In particular, I would suggest that you include your child in those investigations, as you see fit, because as I've tried to indicate, one of the prime diagnostic tools in dealing with seizures is actually the experiences and senses of the patient.

By the way, there are of course various triggers for seizure activity. I can't say that I have drawn any correlation in my own experience with classic ones (like changing lights, sounds or exhaustion). In my case, I have had more seizures while being physically active (riding bikes, participating in sports, doing yard work). I also have low blood pressure and these too things taken together have led me to be interest in the various theories that suggest seizures can be triggered by poor blood flow.

I wish you success in dealing with your son's condition.

This stuff is complex.....it can also still be epilepsy even when scans don't show it up,as often,there needs to be seizure activity at the time of the scan.

what age did have them?
they could have been febrile convulsions,am had these,but doctors now think developed epilepsy after to.

There is a comorbidity (relationship) between all ASDs and seizures. However, the significance of that relationship is much less with Asperger's syndrome.

I think many contributed in all different ways! About the weighted blanket - you may order directly from the website, just click on the link. Mine really helps in all respects.

dorkynorky (funny name!): You are amazing, especially considering all you've been through.

I think everyone here is amazing. This thread confirms my belief that people with AS are highly intelligent.

Thank you for responding, to each of you. I'd like to make comments on some of the posts, but I'm going to have to wait until tomorrow or Saturday. This is going to require some thought, and I don't have any thoughts left right now. It's been a long day.