Help!

[crisdelgado57]

My 16-year old son had his first gran mal seizure last 07 December at 730am. He was playing a game in the computer, then he noticed his 2 arms were shaking. He said he wanted to call out but he felt he couldn't talk. So he said he was thinking that "my hands are jerking, why can't I stop it?" Then he says, the next thing he remembers is when he woke up on the floor. What happened in between was that his whole body started shaking and he was like a sheet of plywood. My husband heard a sound "PAK!-PAK!-PAK! and asked the maid what it was. The maid coming in from the laundry looked up to the loft and said "sir, Kiko is having some kind of seizure." So they both ran up the stairs and got to him - put him on the floor, 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. So they waited for it to stop. It stopped after almost 5 minutes. When it stopped, my husband asked him how he was and he tried to talk but only sounds came out - like "aaah aaah" - then he tried to get up but he couldn't. he lay back down. then he said suddenly - "I want to throw up", which he promptly did. after he threw up, he stood up and it was as if nothing happened. then he said his head was aching and his back hurt. so he went down to his room and lay down for awhile. my husband in the meantime started packing a bag to take to hospital. I was in the province and did not witness this. so they went to the hospital. they gave him TRILEPTAL - half a tablet in the morning and then half a tablet at night. she asked if he twitched or jerk that night, i stayed up and told her that yes, he did. they took some blood to check if he had some kind of infection. then the next day, they did an MRI, it was negative. Then they did an EEG, doctor said even while my son was lying down idle, there were "spikes" that shows epileptial movement. something like that. then doctor changed his medicine to Depakote - 1 tablet every evening. while in hospital, she gave him Depakote in the dextrose - 5 doses I think. after this, they allowed us to go home. he has to drink Depakote 500 mgs each evening till his 1st checkup on 05 January 2009. he has to have a seizure diary and show it to the doctor when he goes for his checkup. then doctor said, she will adjust medication after EEG.

This is so scary. Are the tests that were done enough to diagnose Epilepsy? Is that it? I mean, what are those magnet things that I've seen in some blogs - something like you swipe it? According to my son, apparently he's been having partial seizures for awhile. it's just that he didn't think anything of it so never told us about it. 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. he's also had his arm (sometimes the left, sometimes the right) jerk usually in the morning when he didn't get too much sleep. he says that last Sunday when he had the Gran Mal, was the 1st time they jerked together. he hasn't had an episode since his 1st, and according to my son, he hasn't twitched or jerked. what is going on? help me? i am so afraid!

 

[epileric]

Welcome to the site

The support here is great. There's people like me, who have epilepsy then others who are parents, husbands, wives etc. that can relate to what you might be going through, many who have lots of wisdom to share.

The tests that were done sounded pretty thorough. I was diagnosed just with an EEG. That's really all they needed to diagnose me since it shows how the brains neurons are firing (or misfiring). The MRI might have shown what could cause the seizure (like a lesion) but it is not uncommon for people to not know what causes their epilepsy (idiopathic epilepsy). I"m glad your son has been OK since, everyone has a different amounts & types of seizures, I can go a few days without one (they're mostly partial seizures) but these days I'm having almost one a day. Just try to find what works the best to control his seizures.

I"m assuming the magnet things you referred to are those for vegas nerve stimulators (VNS). Those are machines that are surgically inserted implanted. I don't know much about them but check here, it should give a better explanation than I can http://www.coping-with-epilepsy.com/index.php?p=vns-vagus-nerve

I understand it can be very scary & emotional to see you child in a seizure but please, for the sake of safety never put anything in someones mouth during a convulsion. He may bite his tongue but sticking a spoon in wouldn't stop him. It only means he may now choke on it or chip his teeth since grinding teeth is common during a seizure. Move things out of the way so he doesnt' crash into them & something soft under his head if you can but do not hold him down either.

Meanwhile check out the rest of the site, you'll probably find a lot of things that will answer some of your questions. Here is a good place to start http://www.coping-with-epilepsy.com/forums/f23/epilepsy-101-part-faq-part-tips-advice-1255/

 

[RobinN]

Hi Cris - my daughter began having seizures at the age of 14. She is now 17 and we have them almost under control without medication.

Please look at the nutritional suggestions. A HUGE trigger for teens as their diet is really random. Also, hormones can come into play at this time in their life, so a good diet and sleep schedule, with a reduction of stress (ya right...)

It is scary... however it becomes easier the more you know about the subject.
My daughters first EEG was abnormal and the rest were fine.
I say.... .they were fine for many years prior to the first event... so lets get them back to a place of health. Seems to me it has to begin from the inside out.

That is my unprofessional opinion, but one that has helped my daughter regain her dignity. Something the drugs took away.

 

[crisdelgado57]

Thank you!

Thank you so much guys, for replying so fast! Okay, I will keep reading up and learning about it. I'm quite a busybody when it comes to that. I don't want to say that it feels good to not be alone, but it does. And to have people to talk to about it, is fantastic! My son usually has his partial seizures in the morning after waking up. Yes, he has it when he didn't have enough sleep (caused by playing video games) and is tired. Since we got out of the hospital, he's been sleeping alot and is still a little tired. His back aches and he sometimes has a headache. We just let him be. We just tell him to rest when he's tired and not to be longer than 2 hours in the computer. Gosh, this is stressing me out! So far, he hasn't had any partial seizures (or he hasn't been telling us about it). I told him that he has to let us know so that when we go for his month's checkup, we can tell the doctor and she can adjust the meds dosage. He's taking Depakote ER - once every evening after dinner. Well, I'll be checking this forum regularly. And thank you for all the info. God bless you all!

 

[epileric]

I mark my seizures, what time I had it, & how strong it was on the calendar. It is easier to look for patterns that way.

I've since switched to excel instead of using the calendar so I can mark down more stuff.

 

[RobinN]

Can you show a visual of the sheet that you use Eric?

 

[crisdelgado57]

sheet

yes, that would be good. i could have my son fill that up instead. thanks Eric!

 

[epileric]

Can you show a visual of the sheet that you use Eric?

I'd love to but I can't figure out how to insert a whole excel sheet. I tried posting part of the sheet but certain columns & all the colours wouldn't post.

 

[crisdelgado57]

huh?

Sorry Eric, I don't think I understand this. My son is keeping a diary - as in a real diary and writing down what he did and if he gets any seizure. He's to do this for a whole month. What do the time mean?

 

[epileric]

What I did was I made a column with the top cell being the date (in bold) & under listed the times in half hour chunks. Every 2nd column was blank to fill in what I did, ate, had seizure, took medicine, went to sleep etc beside the time I did it.

I"m still trying to figure out how to insert a file from my PC here so you can get a good look at what I did.

 

[epileric]

I tried attaching a picture of the spreadsheet since I had trouble attaching the spreadsheet itself. Lets see if this works-sorry if it's a bit blurry, the blue cells are when I took my meds, the red ones are seizures

 

[crisdelgado57]

ok!

that's cool Eric. Got it. I'll make one right now! Thanks!

 

[epileric]

Glad to help

:rock:

 

[joan]

Welcome and you've found a great place filled with many resources.

My son had his first grand mal at 15 in 2005. He does well and is a genetic E. My daughter at 14 started with myclonics (2006) and had her first grand mal last friday. We are working on getting her settled. Both genetic JME

Your son may be photosensitive. My kids are not. If he is, he will have to be careful with strobe lights and certain video games.

Hang in there there is alot you can do to help. Puberty just totally the "extra" pits for some. A chart sounds like a great idea.

joan*

 

[crisdelgado57]

wow!

Gosh, and here I am stressing myself out with my son, you now have 2 to worry about. God bless you Joan.

Yes, I think my son is also with JME. He has his partial seizures in the mornings, soon after waking up. He even had his Gran Mal in the morning too. Oh well, change of lifestyle for all of us. He's okay with it. He's just upset he has to limit his time on the computer.

 

[joan]

TY* But Im lucky and Im hopeful. For the first 15 years my kids had normal illness, normal accidents, stress and never had a problem. Puberty kicks in my problems. Like Robin, I believe I can do alot to control this. Im hopeful, after puberty, with some life changes in diet, I hope they can go seizure free till they hit their middle ages. Where hormones will change again.

I take it one day at a time. I try and make it so its no big deal and I have a wonderful supportive husband that makes it possible for me to do all I need to do. Their dad ignores they have E as he doesnt think Drs and lawyers have E. My Mom tells me IF I prayed more .... I also have days where I give into "having a bad day" then brush myself off and get up and push forward* I truely believe life is what you make it and I plan on making it as pleasant as possible NO matter what bumps we come across: ) *

I wish you well *

joan*

 

[tinasmom]

So glad you are here. I have found a lot of help here myself. I am raising my granddaughter who was diagnosed with E last year. Her E is hereditary, my daughter, my ex-husband and many of his relatives on his father's side have E. There are so many different triggers for seizures - stress, lack of sleep, alcohol, photosensitive, etc.

It certainly isn't easy being a teenager and then to have E on top of it is even harder.

 

[joan]

Well, good news with juvenile myoclonic epilepsy is they usually do very well on meds. My son doesn't have a seizure unless he misses meds or is abusing his body (staying up late, not eating well) He is also a morning "Seizure" person. We've been dealing with his E for almost 4 years now and usually feel IF he's been up for 3 hrs and no problem? The we are safe for the day. That seems.. to be the normal. So far he only has grand mals.

There are some adjustments to make and my son went thru a depression for many reasons. (meds, E, teenager stuff, his dad) But he is doing well these days. We did find a neuro psychologist and he did wonders with my son. Just FYI* For the boys, I think its harder as they have to learn to listen to their body and LISTEN to the clues. My sons in his second year of college, getting very politically opinionated lol and on the right track, I think : ) Were also looking into food allergies to help keep their bodies as stress free as possible.

Really hang in there. Its NOT the best thing but its certainly not the worst. He will do better, all in good time : ) In the meanwhile we keep each other company*

 

[Shelley]

Welcome

Hope you can find this sight useful.
Video games can cause seizures. So can certain Japanimation cartoons.
Did he ever get dizzy while riding in a car while going from shade to sunlight and back?
Do you have set routine for when he is supposed to cut off the computer and retire for the evening? The computer can leave you 'wired' for a while, so may I suggest that he stop at least an hour before bedtime?
Also, check out the nutritional links in this website. Listen to good music as well.

 

[crisdelgado57]

whew

Yes, he has 2 hour limit now on computer. He sleeps early now - between 10-11pm. About the darkness to light - hmmm... i have to ask him later. I don't have any idea if he is actually photosensitive. we'll have to keep a lookout on that one. His MRI proved negative so I don't know. To me, it means he's got no tumor. I have no idea if it can tell me if he's photosensitive or not. The doctor didn't really mention it. Just to limit video games and Japanese anime. Goodness, those are the 2 things he loves most! But oh well, he knows he has to control this now.

You guys are a big help! THANK YOU ALL!