Both of us

[KellyD]

Hi my name is Kelly, I was diagnosed with epilepsy earlier this year at the age of 27 after having a seizure in my sleep. I had been having complex partial seizures for 18 months without realising that's what they were! 3 mths after my diagnosis I noticed my 9 mth old son having strange episodes on his change table which ended up being absent seizures. After a couple of trips to the ER and some scary instances of watching my son stop breathing and turning blue he was also give the diagnosis of epilepsy. These scary instances became the norm before the medicine started to take effect. My epilepsy is very well controlled, my last seizure was a couple of days before i started my meds, but we are yet to control my son's. He is about to turn 1 and he is now on 2 different lots of meds, Tegretol and Lamictal. He has only been on Lamictal about 2 weeks and we have been seizure free for that time. The longest he has gone without a seizure since starting medication is 2 1/2 weeks so here's hoping that we smash that record now with the lamictal and stay seizure free! Before my diagnosis there was nobody in my family with epilepsy and within 3 months there is 2. Still trying to figure out how to cope some days, tired of putting on the brave face and pretending to be strong. If anyone has any advice on how to cope, please let me know!

 

[brain]

:hello: Kelly!

Lovely to see another Aussie from the land
down under and welcome to CWE! One great
place to start off is here: EPILEPSY 101

And feel free to browse around, and in fact,
I just put up 2 new polls, and one of them is
in fact, on COMPLEX PARTIAL SEIZURES!

It is LOADED with information there:

Complex Partial Seizures / Complex Partial Epilepsy

So be sure to check that area out too!

 

[alivenwell]

Like your son, I also had epilepsy as a kid. The best is yet to come when he goes to school. Hopefully his school has a good nurse who will administer his medication on time and accurately. That was not always done for me. And, frankly, as a little kid I simply wanted to play on the monkey bars and swings.

I've personally had a lot of success with lamictal. I take brand name only.

 

[skillefer]

Hi Kelly! Welcome to CWE. We're a pretty friendly bunch, so feel free to ask questions, vent in the padded room, or just chime in. Check out the Epilepsy 101 link that Brain provided. And just remember, epilepsy is not a death sentence. Your son can go on and grow up and go to college, have a career, get married, etc. He may need to avoid certain activities as he grows up, as well as be responsible about taking his meds, but he can have a wonderful and glorious future. The thing to remember is, to not panic. When I was younger, I picked up on the anxiety and fear that my mother had when I had seizures, and that effected how I felt about the seizures. To this day, I still feel guilty when I have a seizure. My dad had a fantastic way of reacting. He was very laid back and calm. So when my parents had to be called, I always asked that the school or hospital call my dad, not my mom. Anyway, feel free to wander around here and ask questions. And remember, you're not alone.

 

[KellyD]

Thanks for your comments! I'm really good at staying calm during a seizure, I talk to him all through it calmly and tell him everything is ok. I doubt he can hear it but I'm guessing he would be able to sense the feeling if I was running around stressing out. I panic at things like rashes or anything that could be a side effect to his medicine. I hate having to medicate him but it sure beats his seizures. I don't even want to think about things like going to school, it scares me to think that he could be picked on or made an outcast because of this illness. Hopefully he outgrows it by then!

 

[Bernard]

Hi Kelly, welcome to the forum. :hello:

If anyone has any advice on how to cope, please let me know!

Try this...http://www.coping-with-epilepsy.com/forums/f36/inspiration-thread-640/

 

[sixpack]

Thanks for your comments! I'm really good at staying calm during a seizure, I talk to him all through it calmly and tell him everything is ok. I doubt he can hear it but I'm guessing he would be able to sense the feeling if I was running around stressing out. I panic at things like rashes or anything that could be a side effect to his medicine. I hate having to medicate him but it sure beats his seizures. I don't even want to think about things like going to school, it scares me to think that he could be picked on or made an outcast because of this illness. Hopefully he outgrows it by then!

welcome to the board.

I understand your fear of him getting picked on. As a mom to 6 kids, I hear what happens on the bus or in school or whatever. Kids always find something to pick on another kid for. Usually it's really dumb stuff like the way a kid wears his/her hair. With a disease/disability/exceptionality the best way to handle it is make sure the kids understand what's going on and how your son is no different than they are save the seizures. Kids often tease what they don't understand and so if you take the mystery away, the reason to tease often does as well.

 

[paradise survivor]

Aloha Kelly--I picked up on your thread and the question about whether your son hears you. I don't know if he does, but I know I do hear my husband when I have one. Usually it is his voce I try to cling to in order 'to make my way back' so to speak. It gives me something to focus on so I can sort thru all the other 'noise' in my head. Point is..keep talking!:e:

 

[KellyD]

Hi Paradise Survivor. It's good to know the talking helps you, I am definitely going to keep talking to my son but I would prefer that his medicine would just work and he would stop having seizures!!! They seem to be getting milder but where he was having about 1 every 2 or so weeks he has had 4 in the last 5 days. Still not many considering what they were but he is on 2 lots of meds (tegretol and keppera now, dr has made a change) and it just seems so unfair that someone so little has to go through so much. The last one he had was about 20 mins after I got off the phone to his dr talking about the 2 he had over the weekend and what he was planning to do medication wise. Thankfully he didn't have 1 on his birthday (my baby boy is now 1!!) he had 1 the night before and one the morning after.