Help!

[joan]

The EEG will show if he is photosensitive and he should be able to figure it out as well. Does he feel funny? fuzzy? a bit jerky? My son loves video games and animee as well. We do try and limit him but he is not photosensitive we just do it as I think it best . He had a grand mal at a War of Worlds card game convention that was held at Rutgers at 8am... see my son that morning Seizure type...

Does he draw? We had my son move to drawing a bit of animee. Then he started to add words and amke stories. That took up some time and distracted him a bit. I push him to read alot as well.

Good luck
joan*

 

[crisdelgado57]

he draws great anime! he's not here now so i have to wait for him to ask him. like i said, it's his favorite things so this is where the big sacrifice is going to come from.

 

[skillefer]

Hi cris! Welcome to CWE. As you can see, we're a friendly group. My best piece of advice would be for your son to start keeping a journal. Have him write down everything he eats and drinks (how much and when), how many hours of sleep he gets, any stress he's under, if he has any seizures, how long they lasted, and what he was doing right before they hit. It will help in trying to figure out what is causing the seizures. Also, if he drinks energy drinks, tea, or coffee in large quantities, he should cut back. I notice you put a limit on the video games. Good idea. Also, your son should probably quit drinking alcohol if he does.

Also, if he happens to have a seizure do NOT put anything in his mouth. I know it might look like he's swallowing his tongue, but he's not. If you put anything hard in his mouth like spoons or sticks, he runs a risk of shattering his teeth or biting you (which your husband already found out). People have lost fingers trying to put things in people's mouths. How to help him? Move anything that he might hit away from him, and if you can, roll him onto his side. He might bite his tongue, but at least he won't choke on his own saliva. I have grand mals. For me, the very last thing to return is speech. I can see people around me, then my hearing comes back, and the last thing to come back is my speech. The paramedics here will ask questions to see how far I am in getting back to normal. Things like, "what's your name, what year is it, do you know what day today is"... Stuff like that. If you see your son have a seizure, time it. See how long it's lasting.

As for depakote, I was on that for a long time. For me, it worked great. The only major side effects I had was weight gain. So don't be surprised if your son packs on some pounds.

Feel free to ask questions, vent in the padded room (epilepsy can be frustrating), or just chime in . Also, check out the Epilepsy 101 thread under my signature. It's got some great basic information. And finally, don't be surprised if your son's EEG comes back normal....alot of us here have epilepsy and totally normal EEG's. Anyway, I hope this helped. And remember, you're not alone.

 

[crisdelgado57]

Thank you! This is all very informative! I am learning so much now and am not as stressed out as before! It seems he'll somehow have some kind of normal life yet! Whew!

 

[Bernard]

Hi cdg57, welcome to the forum. :hello:

... He was playing a game in the computer, then he noticed his 2 arms were shaking. ... Then he says, the next thing he remembers is when he woke up on the floor.

His neuro should test him for photosensitivity. In the meantime, it would probably be smart for him to avoid watching flashing images/colors.

... and my husband tried to open his mouth to put a spoon (sort of what he remembers to do when there is a seizure), got bitten in the process.

That is a myth. Never put anything in the mouth of someone having a seizure. They could crack their teeth or choke on the obstruction.

... It stopped after almost 5 minutes.

5 minutes is right at the threshold of when the Epilepsy Foundation recommends calling an ambulance. See status epilepticus

When it stopped, my husband asked him how he was ...

Generally, people who just finished having a tonic clonic (aka grand mal) seizure will be post ictal for a while and, while they might be responsive to questions, not totally conscious or aware.

... he has to have a seizure diary and show it to the doctor when he goes for his checkup.

That's good. Too many doctors don't bother to tell people to do this. It's very helpful in determining patterns and seizure triggers.

... Are the tests that were done enough to diagnose Epilepsy?

If your son has been experiencing partial seizures for a while and had a tonic clonic too, I'd say it's pretty clear he has epilepsy. Testing can help narrow down the specific type (and *possibly* reason).

... I mean, what are those magnet things that I've seen in some blogs - something like you swipe it?

As mentioned before, you are likely referring to the VNS. I wouldn't recommend it until you've tried medications and other alternatives without success first.

... he said that at least on 2 occasions when he got drunk and passed out in a friends house, he woke up jerking, he thought he got too drunk so he went right back to sleep.

Alcohol and lack of sleep (or even just an irregular sleep schedule) can lower the seizure threshold (make a seizure more likely). I'd highly recommend him to stop drinking. The need to fit in with his current social circle will offer him little comfort in the years ahead if it exacerbates his seizure condition.

... i am so afraid!

We'll help where we can. Don't be afraid to ask questions. Education is the key.

 

[Shelley]

16 and drunk?

Excuse my ultra conservative attitude. But 16 and drunk? There are massive amounts of changes going on during adolescence. Drinking should not be allowed until he is way older. In my opinion, 21 is still a little to young. 24 maybe.

 

[skillefer]

*chuckle* Don't forget Shelley, laws differ for those outside the US.

 

[crisdelgado57]

You're right Shelley. That's why he never told us. He isn't allowed to drink yet. He stayed over at his classmates house. I actually found out only when we were at the hospital. And now he knows he can't anymore and it's ok with him. He doesn't really drink, according to him. Only those 2 times that they all had a party in his classmates place. hahaha. It's cool. He's been very good about the whole thing. He's been very responsible since we got out of the hospital.

Actually, laws in the Philippines are just the same - in drinking. No alcohol served to anyone below 18. But families here are more conservative. I've lived in the States and I've lots of relatives there too. My daughter actually went to San Francisco State University for 2 years. So yes, it's a little different. If I'd known my son drank the 1st time, he would have been grounded and his friend would have been banned in my home. He was very guilty when he told the doctor about it and I was there. He even apologized. Oh well, kids will be kids. But thanks for the concern and you are definitely right!

 

[Shelley]

sorry for the soapbox

But I flashed back to my youngests' first drunk. He was as sick as a dog the next day, and reeked. So I had extra chores for him outdoors in the Texas summer. He was a bit more careful in hiding it. But he did learn a lesson: that if mom catches you, there's hell to pay.
He eventually got married and quit drinking and smoking. Thanks to his wife.
(Hell to pay)
Shelley

 

[crisdelgado57]

hahaha! Good for you! My son doesn't smoke (yet) and I don't think he will. Drinking, well, he doesn't have a choice now. Yup, if I found out before - there would have been hell to pay too! Us mother's rule! hahaha!

 

[Shelley]

gray hair

hahaha! Good for you! My son doesn't smoke (yet) and I don't think he will. Drinking, well, he doesn't have a choice now. Yup, if I found out before - there would have been hell to pay too! Us mother's rule! hahaha!

Do we insert the gray hair joke here? onder:

 

[crisdelgado57]

hahaha! but i don't have gray hair! most filipino's don't gray till their 60's!

 

[borgolibero]

I'm not a doctor, so please do not take care too much at my opinion. But when I had my first seizures in Italy they waited a little to say: epilepsy. A single seizure can happen to everybody, I had 2 seizures in 3 week, EEG about 3 times and they do what we call a TAC. Depakote immediately?

 

[crisdelgado57]

that's what the doctor gave him. what would you suggest?

 

[crisdelgado57]

I mean, I guess the diagnosis was based on the gran mal, the eeg, and my son's telling him that his arms jerk in the morning, specially after a very late night, he wakes up. then the times he got drunk and woke up jerking. times he didn't tell us about. only he told the doctor in the hospital. oh gosh. now i'm scared. help pls. what do you guys all think?

 

[RobinN]

Being scared doesn't help your son. Take a deep breath and rule out every possibility.
Tell him to clean up his diet immediately, including alcohol. Alcohol does turn into sugar in the body... there might be a blood sugar issue with him.

Consider the top four foods that contribute to allergies, wheat, dairy, soy and corn.
No aspartame, MSG or its related by products, no artificials, plenty of water, rest, protein with each meal.. limit sugar and foods that produce sugar for the time being
See if that helps in any way... could take some time to clear up his system though.

Doesn't hurt to try...

 

[Bernard]

I'm not a doctor, so please do not take care too much at my opinion. But when I had my first seizures in Italy they waited a little to say: epilepsy. A single seizure can happen to everybody, I had 2 seizures in 3 week, EEG about 3 times and they do what we call a TAC. Depakote immediately?

He was hospitalized for a seizure lasting approximately 5 minutes (considered status epilepticus by many doctors). I'm guessing the drug was prescribed immediately to prevent a repeat of a possible life threatening seizure.

 

[skillefer]

Hello again! I'd say, don't be scared. The doctor is basing his diagnosis on the info your son gave him.....info that he hadn't bothered to give to you. Personally, I would trust the doctor. But then, that's just me. I usually do trust doctors unless they make themselves sound like idiots. Did the doc take plenty of time to speak with you and your son? Did he run tests? Are you seeing a neurologist? If you're not, I'd definitely get your son in to see a neurologist. The important thing is do NOT pull him off his meds immediately. doing that can trigger more and more violent seizures. do not take him off his meds without at least consulting his neurologist.

 

[borgolibero]

Yes, a good neurologist first and only after this a diagnosis and a drug.

 

[joan]

WHen my son has his first seizure, the Dr asked him if it ever happened before, he said no and the Dr gave us the option of drugs but recommended we wait and see IF it happened again. It did happen a few weeks and he went on lamictal right away. Id trust the Dr as well. Id also ask around and see if anyone can recommend a nuerologist or epileptologist. Your son must realize that while this is controlable and certainly a doable thing HE must participate in his own well being. I dont have E and I still dont drink, Just not my thing. Not every adult drinks. He should think of ways to improve his health. Making him involved may help. My son did have a rough 3 - 4 years. BUT he is really doing well now and on the right track. Hang in there momma : )

joan*