Seizure info needed.

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22 Jul 2008, 12:17 pm

aurea wrote:

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.

I think he needs medication, anti convulsive one, or it will get worst... hospital now, and a good neurologist.

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Triangular_Trees
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22 Jul 2008, 12:26 pm

Quote:

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

CHANGE DOCTORS THIS INSTANT!! !! !

A doctor with even a rudimentary knowledge of epilepsy would have told you to not even let your son near a pool until the cause of these spells is found it. You should also not let him on a bike, take baths (showers are okay), be alone, use slides and a lot of other things. Definately report to the licensing board that your doctor suspected your son might be having epilepsy and still gave you the impression that it was okay to allow him to swim. That should have never happened regardless of what the EEG showed

The doctor not doing that could have taken your son's life - you are very lucky he still isn't getting the huge seizures yet or that is what would have happened

He should only be in the pool if A) his seizures are controlled with medicine B) someone who knows he has epilepsy and knows how to administer basic first aid and life savings skills is near him AND if he has not appeared to have no seizures for an extensive time period (at least 1 year at the very earliest) than he needs to be with a buddy who knows he has epilepsy, is able to quickly pull him out of the pool, and is responsible enough to keep an eye on him at all times. If he needs a buddy (and if he is losing awareness for even brief periods of time he does) then there also needs to be someone else who is aware of his epilepsy watching out for him as well, not just his buddy

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22 Jul 2008, 12:44 pm

I also wanted to point out something I noticed day (and on the way back from my neurologist appointment too)

We pulled into a wal-mart parking lot and there was a young man standing in between two cars clapping his hands together twice, clapping them on his waist twice, clapping them on his buttocks twice, and repeating this, while he talked to somebody in one the cars. He did appear to be doing this intentionally and had good rythm with his movements.

My friend said "look at that dopehead standing there." And recalling how I had been accused of doing illegal drugs I replied "you never know he could be having a seizure." My friend said "No, he's on drugs. A seizure wouldn't make him act like that."

Then we found a parking space and while we got out of the car that man and a woman (his mom?) were walking past us. He was telling her how the doctor said that the medicine, combined with a high fat diet, would help stop him from acting like that. So I was right - he was having a seizure. THough even I hadn't seriously thought he was when I saw him doing that.

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22 Jul 2008, 2:06 pm

Triangular_Trees wrote:

That is sad, isn't it? To think how negatively prejudged one can be?

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22 Jul 2008, 2:08 pm

Yes. I'm not sure if I posted it here or not, but the last time I went to the ER for my auras, the hospital directly confronted me about my illegal drug use, and then did 2 drug tests before they decided I was telling the truth about not being a user

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22 Jul 2008, 2:18 pm

Triangular_Trees wrote:

How incredibly frustrating.

I have to confess, this thread has me thinking more about my daughter (my NT child). Probably overthinking, lol, but it's good to cover the bases and rule things out. She is having headache issues, and complains about vision problems BOTH far and near, despite officially tesing within the "normal" change. I am definitely going to take her for more detailed vision testing, and at the suggestion of the doctor we are keeping a mental journal about the headaches (yes, it should be written, but I haven't gotten that far). She also has exhibited extremely erractic behavior, and has totally scared me. She's only 7 ... I don't know, maybe she could be AS as well, but she is SO different from my son, we've been so confident that she is NT, just subject to more medical issues (allergies and probably depression - I've pulled up a list of pediatric psychiatrists because I think she could use some talk therapy). Oh, and she tells me all the time that she didn't know or do things that I am sure she heard or did. ANYWAY, I should watch more carefully to see if any of it could be more nuerologically based.

Man, being a parent and doing right by your children can be SO hard. Doing right by anyone seems like such a crapshoot at times ... but we can't stop trying.

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Triangular_Trees
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22 Jul 2008, 2:34 pm

have you brought that up to your pediatrician? I can see why this thread would scare you, but depending on what you haven't listed you might not have enough for a neurologist to take your possible concerns seriously enough to warrant an investigation at this point

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22 Jul 2008, 2:48 pm

Triangular_Trees wrote:

We talked about the headaches, eyesight, and moods - considering only that possibly the first two could be linked. We are way too early to take anything to a nuerologist, I think. I have a lot more observing to do, notes to take, and discussions to have with my daughter (she admits there are things she doesn't feel she can tell me, which is one of the reasons to start her in talk therapy - I've told her they are professionally bound to keep her secrets). I think the idea of seizures with her is a long shot. But I should watch and look and be sure I can rule it out.

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22 Jul 2008, 5:24 pm

*and just don't get paranoid. If she has my type of seizure than anything and everything she does can look like one.

So an extremely paranoid person would be like "oh no, she's tying her shoe, she must be having a seizure!! And now she's chewing bubble gum! AHHH!! And she's looking at that bird over there!! And she's singing a song to a commercial!!"

*Everything above is something I could be doing from a seizure

**I don't believe you would become anywhere near that paranoid, though, just illustrating how watching for the symptoms might increase the likelihood of your thinking she has epilepsy

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22 Jul 2008, 5:44 pm

Triangular_Trees wrote:

Lol, point taken.

In the end, I fall back onto parental instinct. It's wierd how such a foggy tool turns out to usually be the best one. I really don't think she has it, but I do think I shouldn't be too quick to throw out the possibility.

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Spacedoubt
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22 Jul 2008, 9:41 pm

ericksonlk wrote:

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...

Well...I'm just chiming in here. I have temporal lobe epilepsy, which involves a lot of auras. I also have migraines. The 2nd kind of aura that you're describing sounds like it could be epilepsy. Actually, my daughter has epilepsy, too. Her seizures start in the occipital lobe and she has seizures when she leaves a dark place and goes into a bright one. She also has seizures that look just like migraines. Do you lose part of your vision during your migraines?

Also...carbamazepine....isn't that used to treat seizures as well? Generic Tegretol maybe? I know that several seizure meds help with migraines.

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22 Jul 2008, 9:45 pm

Triangular_Trees wrote:

UGH!

I am sure that I look messed up when I am having a simple partial or a complex partial seizure, too, but law enforcement and medical personel need to learn the difference between under the influence and having a seizure!
I am so sorry that happened to you.

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22 Jul 2008, 9:54 pm

Aurea,
It certainly sounds possible that your son is having seizures. Especially the weird feelings and things. Those sound like auras or simple partials to me. I have epilepsy and so does my 11-y-o dd. I would pursue that right now. It is horrible to live with uncontrolled seizures and not know when the next one is coming.

Have you checked out the forums at the Epilepsy Foundation of America? There is a Parents Helping Parents forum and I have found it so helpful. I really don't know how I got along without it. EFA

Good luck.

aurea wrote:

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.

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22 Jul 2008, 10:22 pm

Spacedoubt wrote:

ericksonlk wrote:

When I let my childhood neurologist know about my problems this year, and how the first doctor thought I was just having migraines and that there was no reason I couldn't work (this when i could barely walk 5 feet and sometimes couldn't get out of bed in the morning) he suggested to take a multivitamin like 1 a day womens daily for a month and if that didn't improve my situation, than ask the neurologist to put me on medicine that controls both migraines and seizures, specifically mentioning "Keppra or Topamax or Lyrica"

(i just received this email today as he was on vacation the past couple of weeks). Its great to have a doctor you haven't seen in 8 years and who is now on the other side of the country still caring enough about you to help you out isn't it. I got the impression he honestly cared about me from day 1 and now i know i was definately right

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22 Jul 2008, 10:31 pm

Quote:

I am sure that I look messed up when I am having a simple partial or a complex partial seizure, too, but law enforcement and medical personel need to learn the difference between under the influence and having a seizure!

especially when you tell them you have epilepsy and this is the same feeling you've always gotten from your seizures. It shouldn't matter that your last "recorded" one was 12 years ago

Quote:

Her seizures start in the occipital lobe and she has seizures when she leaves a dark place and goes into a bright one.

Mine are in the left frontal temporal lobe and I did once go down the dark tunnel into the impossibly bright white light. Though actually rather than walk my body was flung head over heels down the tunnel. And god wasn't in the light, three doctors torturing me with a giant drill and laughing at my pain were. Good thing I don't believe the tunnel/light is prove of heaven cause otherwise I'd have undeniable proof that I was going to hell when i died, especially since that was the seizure where i was unconcious and not breathing

Its my opinion that whatever is your last thought is what you see in the light - my last thought was that the doctors were torturing me. If you know your near death you are probably going to be thinking about god and asking him to help you so you will see god when you go into the light. if you are thinking of flying an airplane you will be flying an airplane upon reaching the light

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22 Jul 2008, 10:34 pm

One other thing be very careful with epilepsy websites -make sure to turn off the flash in you browser before visiting them. Sometimes hackers like to take over the sites. There was a very vicious attack on www.epilepsyfoundation.org recently. Not only did the hackers fill the forums with rapidly brightly flashing images, they made it so once you opened that page you couldn't close/minimize your browser window or turn off your computer.

Many people had severe seizures as a result. Its lucky no one died as severe as the hacking was described as being, though many people did have to go to the hospital.

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