Seizure info needed.

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Hi all,
As some of you may recall, I have a 9 yr old son (AS) that is currently being investigated for possible seizures. He has had an eeg whic the technician thinks is ok, or so she said to me. Me are still waiting a follow up apointment with the nuerologist.

3 days prior to his eeg I had been thinking its strange that his school had never noticed any of his odd behaviour, ie the eye roll and the wobbly legs and him coming over all faint or the blank facial expressions etc. I asked J on his way to school if he had ever felt dizzy at school ( because he complains of this sometimes with the eye roll, leg wobbly thing he does) and he says yes and he even fainted twice at school. What!! !! !! Yep turns out school remembers one time when he apparently suddnly came over all flushed and hot and bothered looking, they had him lay down with his feet elevated, but they never thought to tell me. Im not 100% sure what happened because it happened a while ago and J doesn't remeber every thing, I can tell you they wont be not telling me in the future, J's vp was very angry when she found out she had no idea till I told her.

Any way todays problem is this; I picked J up from his specialist program that he loves on Wednesday afternoon, we had to go to the shop before heading home, J suddenly got very agro. When we got out of the car he was still agro but he complained of a strange feeling in his brain, he couldn't really discribe what he was feeling, he looked pale but dark almost bruised around his eyes, he then shout out because he had a pain in the side of his head. He still looked pale for a little while, still a little agro. I started to think maybe it was just a head ache, but he wasn't complaining about it at home he was back to normal. The whole episode lasted about 15 minutes. I asked him if this has ever happened before he said yes I asked if his eyes were ok he said yes, but sometimes apparently he feels like his eyebrows are being pulled tight up towards his hair line, all very confusing.

Can anyone out there enlighten me?????? Am I worrying about nothing?? Or should I really be pushing for this next apointment a little harder.

sounds like seizure activity to me....uncontrollable spasms....

My seizures do make me angry - I lost quite a few friends from that last year, but now they know why there was a sudden 180 degree change in my behavior they are coming back to me. No one noticed that was from seizure activity because I was having several seizures each day that neither I, nor the person I was speaking at the time, could notice (thats why my kind of epilepsy is one of the most difficult kinds to diagnose - I'm not sure why it rarely shows up on the EEG though. I didn't ask the neurologist to explain that)

What made me angrier as a child was that I'd say something happened/didn't happened and I'd be accused of lying. I never lied and I considered calling me a liar to be the worst crime in the world. As an adult I have to accept the fact that I was lying all those times - not intentional but because I had a seizure that either resulted in me hallucinating or enganging in events that I have no recollection of

They are also just as likely to make me upset and to make me feel like I should cut everyone out of my life - so I'll delete my facebook and myspace, ban my friends email address, delete all the numbers from my phone, and decide I don't want to go to any clubs or organizations. Being upset like that has only happened once since I got on my seizure meds and I didn't push anyone away that time because I knew it was a sign of a seizure, not a sign of my having the worst life in the world

And as you know I did punch ER doctors and threaten to kill my siblings because of seizures - I've no memory of doing either one, but since the ER doctors had to restrain me to give me medicine (and the nurses wouldn't come past the doorway once I was unrestrained) I'm sure people are telling me the truth about how I was punching them. And this also explains why my high school teachers would never let anyone go to the principal to complain when I hit them and would instead pull me aside to ask if I was feeling alright (by 9th grade they all had information detailing how I acted during a seizure)

That sounds just like an aura, which is a minor seizure. When I was asked to explain my aura at 14 years old I described it as a creepy feeling outside my head and stomach that happened when my dreams came true (many aura's involve a sense of de ja vu). I hated that feeling, and consider it painful though it was more discomfort than pain. I used to double over from it



That's extremely disconcerting. Since its an aura you don't have to worry to much about it being too dangerous, unless he's doing something like riding a bike/crossing the street/swimming but major seizures that last longer than 5 minutes can result in death. I have had a seizure where I stopped breathing and was unconcious - the only thing that saved my life than is that after an aura of 2 hours I went to the nurse to complain about the creepy feeling I was getting and recognizing what it was, she immediately called paramedics. I had brief aura's on and off for about 3 years before that but no one would believe me because I was saying I was feeling something outside of my body, and they knew that no one could feel something like. I did have one that lasted 10 minutes or more during the school year I had 3 major seizures within an hour of each other, but I don't remember the time period between that aura and the major seizures

If that happens again before you get him on seizure medicine take him straight to the hospital. Especially since many epileptics have an aura that proceeds a major seizure. If your current neurologist says he doesn't have epilepsy, ask to see a different one. If you are in a big city you should be able to get an epileptologist

Last edited by Triangular_Trees on 19 Jul 2008, 7:49 am, edited 1 time in total.

One other very important thing

UNDER NO CIRCUMSTANCES SHOULD YOU ALLOW HIM TO BE AROUND FLASHING LIGHTS

Until a neurologist who diagnosees him with epilepsy tells you its okay, don't even drive around in the car when he gets his aura, unless you are taking him to the hospital. There are a few epileptics who have seizures because of the lights flickering through the windows which are caused by the sun shining through trees.

Light flickering through trees has only bothered me once - and it was this time around when the first neurologist I saw was an idiot who said I couldn't possibly be having seizures because none showed up on the EEG so I went around a year of having undiagnosed seizures, and the few months before that happening I was likely having several seizures throughout the day and night, and constant seizure activity on some days (you can have seizure activity in your brain without having what is considered a seizure -duing my last EEG I had constant seizure activity with 6 seizures. And there is a chance I had more seizures then since I do have seizures that are rarely, if ever, captured on an EEG)




Also contact your local epilepsy foundation for information about which neurologists are most skilled to help your son

http://www.epilepsy-society.org.au/pages/contacts.php

Thank you all so much.
I get the feeling that you all believe that this is infact seizures ( so do I)
I do believe my child, he doesn't lie. He does have probs explaining things and can misunderstand things but he NEVER deliberatly lies.

I asked him again about the episode just recently, he discribed the feeling in his brain in two ways 1.= like someone dancing in his brain
or he says its like
2.= poison trying to get into his brain (hence the creepy feeling) then the poison gets in and causes a pain.

It DOES sond like a seizure! And, to amplify what Triangular_Trees said, NEVER expose him to flashing lights unless there is a GOOD future history of it not affecting him, or the professional says it is ok AFTER an EEG with such activity. A mere EEG will likely not tell you much! You want to expose the person to things to agravate the thing you want to check. In this case, that means like sounds and lights. Though it isn't VERY informative, you MIGHT want to look at:

http://youtube.com/watch?v=EhcmxHjA9Ic

It is about a girl with AS that went for an EEG, and shows the process that SHE went through. I think she did well.

BTW she's a Dr Who fan, which is why her father made the comment.

If there was a visual aura involved,
and a pain in a specific place in the head,
and odd sensations in the brain,
then miagraine is a possible diagnosis.

sensativity to light
sensativity to sound
and irrational anger prior to the event are common.

Also look into the possibility of a TIA, or STROKE.

I suspect you need to get him to a professional, asap.

It can also take a number of EEGs to diagnose epilepsy and it can be very hard to find because basically you have to have seizure activity during the EEG.

Yes be careful about flashing lights one thing people often forget is things like swing sets and the light through trees while swinging especially with kids I had quite a few injurys as a child because I loved to swing and no one realised right off it was the light through the trees

Certainly get another appointment quickly and make sure that a very qualified person tests things as it is so hard to find sometimes. They also sometimes have a person not sleep the night before to be more likely to have a seizure.

Oh and the irrational anger, that was always a problem I can also become kind of combative after even though I'm a generally non violent person.

see if he can get at least a two day EEG,the routine quick one doesnt give much time for a seizure to happen,and its not going to show seizure activity unless it happens.
he might also need to be brought near whatever it is that can set him off so it does actually set him off.
that is what happened to am during a two day stay,as they were trying to discover what was happening during meltdowns,shutdown,headbanging etc. for am the EEG shows the 'right mid anterior temporal area' is abnormal during MDs,SDs etc.


what about convulsions,he could be having them rather than epileptic seizures.

I have Auras very often, but I don't believe I have epilepsy because I have also migraine. But your comments makes me wonder if there are two kinds of Auras...

the first one is migraine related and appears before the headache and sickness,

And the other one is related to flashing lights or when I move from a brighter place to a dark one... this is very annoying and takes 5 minutes... to disappear.

What do you think? BTW it has become very rare after I take carbamazepine...

Tonic clonic or grand mal seizures result in convulsions. The seizures are some of the most dangerous seizures to have. Not just because you can fall down and hurt yourself either. Though my kind is also dangerous as I might end up walking off a cliff because I think I'm stepping onto a bridge, or walking out into traffic because I think I'm walking around my house

Also, I forgot to say this earlier, when it appears your son is having a seizure have him lay on his side and put a pillow under his head. This will prevent him from choking on his own saliva should he go into a grand mal seizure. And be aware that he will need to sleep afterward - he might sleep the next 6 hours and be ready to fall asleep again 2 hours later.

He will not swallow his tongue (that being physically impossible), but he may end up biting his tongue. I believe the school nurse used what is called a bite stick on me when I had the seizures in school but I could be wrong

Last edited by Triangular_Trees on 20 Jul 2008, 3:01 pm, edited 3 times in total.

I would say just go to one neurologist and take their opinion - but then you might end up with one like the idiot I had. Luckily I don't have any brain damage from her sheer stupidity.

Have you ever had a hallucination while this was going on or shortly therafter? - ie seeing something you know isn't there, getting angry at someone for something they insist didn't happen, and not be willing to let the subject drop, sometimes even for months. Your most angry attacks on that person occuring right after you wake up

Do people tell you that you were threatening to harm yourself or others and you know you never did such a thing?

Do you ever wake yourself up with a sudden jerk from your leg or arm?

Have you ever seen someone in one corner of the room and the next second there 15 feet away?

Does your aura result in a feeling that is outside your body? difficulty breathing? blue skin?

Also look/feel the inside of your mouth. I once found it odd that a dentist asked me if I freqently bit the inside of my mouth, as that never happened. However feeling inside my mouth, both cheeks have a thin scar running across them. This is from biting my mouth when I have a seizure.

Do you feel weak or drop things for the next day or two after getting an aura?

Does running around make you feel dizzy? do you have difficulty doing things like walking up hills even though someone in your health should be able to do that without problem?

At any time in your life, has someone thought you were schizophrenic?

If you answered yes to any of these then you should ask your doctor about seizures

Looking online, as I don't know too much about migraines, I saw that the problem with migraines is because of a hypersensitive occipital cortex. There is also something called migralepsy where you might have a seizure with your migraine - though you shouldn't have an aura then. Has anyone ever told you where at in the brain your problem originates?

There are also drugs that work for both migraines and epilepsy, so if your current medicine isn't stopping most of the migraines then I'd ask to switch to one of these. Just make sure you can back up your reasoning and some doctors get offended that you don't blindly accept their opinions (others like my general practitioner welcome it when you inform them of something medical you researched)

An up date-
I met with J's ped he informs me that whilst EEG is apparently normal this doesn't mean that what is going on isn't seizures. Apparently autism = a 35% higher chance of seizure activity, because we also have a family history of epilepsy J's chances are higher. I also had a brief meeting with the neurologist, she still isn't sure whats going on. His EEG is normal, he doesn't appear to be having these episodes often enough for meds or for the docs to be to worried.
Both docs have suggest a detailed diary/log to be kept by everyone who deals with J, all recordings of any odd/ different behaviour however mininmal need to be recorded.
The neuroligist says maybe migraine but not sure because it didn't last to long, maybe odd aspergers behabiour but we don't know for sure, maybe aures, maybe mild seizure, maybe pre seizure activity. So basically I'm no better off.

Now I just need to convince J's school to record anything they see. I don't much like my chances of them noticing anything "odd" as they didn't even think he had aspergers until recently and even now not much has changed in their dealings with J. They didn't even think to let me know he had had an incident at school (what J calls fainting).

Thanks for all the support guys.

what about getting a note from the doc to give to the school re: noting seizure activity ?

I'm going to have to do something, he did it again in the pool today.

He was in the middle of his usual swimming lesson (nothing to strenuous, his swim teacher is a real softy and knows him well) All of a sudden he tells her he feels funny. He doesnt want to be here anymore. She brings him over to the side of the pool to me. He tells me he is confussed and scared his head feels funny like it did last time, he used the word numb. He says things don't feel right and he is feeling nervous. I tell him to go to the steps and sit there. I had to put the stuff in my hands back with our bags whilst he made his way to the stairs his swim teacher was right beside him. I turned my back for just a couple of seconds and I could hear his swim teacher saying J open your eyes, J open your eyes. I turned around to seee his head fall into the water, thank goodness she grabed him and lifted his head out, he then rested his head on the pool floaty until he got to the steps. I asked him to get out but he said his legs felt weird and tired. I finally got him over near a wall where I sat him down and put a towel around him. He kept saying he felt funny, he was confussed and he felt like things were watching him. He then said there was stuff in the towel. He said he felt a pain in his brain. I asked him to point and he pointed about at his hair line. He just kept saying he didnt feel right, and he is confussed. He was really scared. He said he didnt feel like himself.
When he was a little more settled I asked his teacher what happened with him shutting his eyes, she said he had a strange look on his face his eye lids looked heavy and his eyes rolled up. Whilst I was talking to his swim teacher he came over with a really scared look on his face he threw his towel at me saying there was stuff in it it didnt feel right, again he said he felt different and felt like things were watching him. He was acting very paranoid and scared.

Something isn't right, how bad do these things have to get? When should I be taking him back to the hospital? Should I be getting worried? I am so confussed and stressed.

One of the teachers greatest frustrations is being asked to keep a detailed account of a childs behavior during the day because thats just not possible for a teacher to do and still do their job at the same time. So you need to make sure the teachers have checklists, not blank sheets to write on. Otherwise they won't be telling you half of whats going on, or even more, because they won't have time to stop class several times to write things down and still get lessons taught. And even if they wait till prep to try and write it down, chances are they'll forget something, or even remember it wrong. Once they are familiar with the check list, they won't even have to pause during a lesson to mark down what happened.

Also have them tape the same check list to J's desk, divided into sections like "math, science, reading" and have him check when he feels a certain way or notices something


And make sure to educate the school. A lot people seriously think you must be convulsing to have seizures, and don't realize that you could be having one while talking to them without either you or them noticing it. Don't hand out the information, because if the school nurse is saying its not epilepsy the teacher might even be told to ignore it, or not even given it. Insist on meeting with all your child's teachers - don't forget ones who may only be responsible for him during lunch or recess too, and then explain to them in detail the signs of a seizure, and when they should call for an ambulance, etc. if they don't appear interested bring up the legal implications of them ignoring a potential seizure while your child is in the process of being diagnosed for seizure activity and say how you'd hate to take that route.

You want to scare them, but not so badly as my principal was scared once he saw me having a complex partial seizure - he would bring a wheel chair down if a teacher called and said I was throwing up in the bathroom, and I'd be sent home for looking flushed or even tapping too much when i went to the nurse for a cough drop