Hoping for help...

[JJandKylesMom]

Hello to all! My oldest son JJ had his first siezure 2weeks ago..prior to that pretty much every morning for about 4months when he would get up for school he would drop things...not being up sometimes with him, I would just be told about them and we would both just ignore it...thinking it was him being tired. Well the morning he had his first siezure I had heard him drop a glass bowl and got up to help him out..he had dropped it on his foot and was bleeding. I made him sit down to eat while I was cleaning up the mess, and I noticed him making a mess with his food and asked him what he was doing...he would just look at me and say what? He went to continue to get ready for school and while he was standing in the hallway his arms and chest would shake..kinda like a "chill". I got him to sit down with me and I told him I wasnt sure wht was wrong but I felt that he should stay home from school and we would just go see the doctor...it was minutes later he braced himself into the chair and started to shake, his lips turned blue and I thought at that moment my son was dying. I had never wittnessed a siezure before and have never been so scared. I have been praying everyday for God to watch over him. Im hoping finding this site we can find strength and any information how I can help JJ deal with this...he was put on Depakote ER but takes the generic form of it. Prior to this we got him a truck and he got his driving permit. On a daily basis he hangs his head and wishes he could drive. I dont know how to get past this shock and help him cope...They told us at the hospital he may never have another siezure and the meds would help with that. He is 15yrs old and I probly check on him 3-4times a night to make sure he is ok....Im trying to be strong and I need to be for him..if anyone can give us some coping skills I would be so grateful! Thank you for listening!

 

[epileric]

Welcome to the site

I"ve had seizures all my life- they were discovered when I was 3 years old.

I do know what it's like to not drive (actually, I've never driven) and as an adult I do consider myself lucky because having never driven I've developed an independence and never got used to the luxury of driving before having it taken away.

Something my father told me when I was 15 right after telling me I couldn't drive due to seizures is "don't worry, you can move to any country you want & not worry about being drafted".

I was also on depakote (depakene in Canada) when I was in my teens but I was also on 2 other ant-epileptic drugs at the same time. The side effects of all 3 meds was pretty extreme so I was very spaced out & not very functional. The one thing I'd wished my parents would have done was been more aware of which was effecting the quality of my life the most, the seizures or the side-effects of the meds. Be aware of the side-effects & know there are other medications that might help with but have less side-effects.

Meanwhile, make yourself at home here & check out all the rooms. There's even a padded room where only members can read what you post & is there just to vent your stresses & anxieties if that helps.

 

[Endless]

Hi, JJandKylesMom,

Welcome to the forum.

I can only imagine how worried you must feel. With luck, JJ's seizures will now be under control with the Depakote, and his days of seizures are over.

I understand the clumsy part - before I have a seizure I turn into a complete klutz - I drop things, run into furniture, trip over my own feet, etc. Oddly enough I never put it together that I'm pre-ictal (before a seizure) until I have a seizure. Even though it's happened for years, I still don't think in the moment about it.

Does JJ remember any of his seizures? Like when he was asking, "what?" Or the shaking?

Tell him to take heart on the driving. It just may take awhile to get there. In the meantime it's kind of tough - there's a bike, the bus, bumming rides with friends and parents. It really affects both kids' and adults' sense of independance. But it's going to be okay.

Here is a link to the driving laws in your state:
http://www.epilepsyfoundation.org/living/wellness/transportation/drivinglaws.cfm

There are lots of parents in here, and I know they will chime in soon. I think Robin's daughter is just a little older than JJ - I think she is about 20 or so. (Robin - how old is Rebecca?!)

Hang in there. It's going to be okay.

 

[JJandKylesMom]

Thank you Both for the replies...I couldnt wait to sign back in and see if someone had replied....to answer the question if JJ remembers before..or after...he doesnt remember anything that morning from the time he got up till about an hour after, and was in a fog for about 4~5hours after. As far as I know this was the one and only time he had a siezure..they called it a Grand Mal. Thank you both again for your quick replies!

 

[SevenC]

I'm brand new here too.. I've been having seizures since 2007. My 8 year old son just started having them in November of 2010. He never had them before, perfectly healthy, and at a boy scout meeting he had one and just fell out completely. They had to call an ambulance, I have never been more scared in my life. Now he is on medication and is doing very well--I wish I could say the same about my seizures--but we're talking about the kiddos here. My son doesn't remember any of his seizures. Since he is young, we haven't discussed driving. My neurologist told me I should be able to drive again once we get the medication sorted out so I'm hoping the same happens for your son. I'm so happy to be here and have others to talk to. By the way, have you contacted his school and let them know? Not just for medical reasons, but for learning plan reasons? My son has a medical 504/ IAP. He's in a regular class all day long but during long and extensive tests, he gets repeated directions and extended time that his seizures and medications and interfere with. Wish my son was a little older and I could offer more advice, hang in there, we know how you feel.

 

[corsch]

I'm not sure if you ever went to a neuro or not but if not then it almost sounds like Juvenile Myoclonic Epilepsy with the jerking. I've got JME and it's controlled with keppra which is specifically for JME (and a few others) so it might be worth it to see a neuro and get him on a more controlling medicine.

As far as driving goes, it sucks! It really does, I got my license taken away not even a year after I got it and it ended my world. I was really, really un-hapy for a while because it was my gateway to freedom. Now I'm looking forward to June 3rd (42 days away!) when I get my license back.

In all reality, there is nothing YOU can do to help him get through the "I just got diagnosed and I lost all freedom" stage. I don't know your son but I was really angry at everyone, everything they did set me off. It could be from the medicine but I was also dealing with people who had no idea as to what I was going through. They didn't really care to listen, ether. The best advice I can give you is try to be understanding when he talks to you. If he come to you with a complaint about the medicine, don't just say "your body will acclimate" really look into it. You might want to encourage him to come to the board, I'm not going to lie when I say that it really helped me knowing that people were going through the same thing who could relate and give me guidance.

I hope you and your son the best, this is something that no one should have to deal with.:e:

 

[saltydog]

You should make an appointment to a neurologist,you will get alot more info, and
maybe some other testing. And as far as driving, if he is having seizsures;not safe for
him or other people on the road. Beleive me I know, lost my licsence at twenty five.
sucks but you learn to live with it.