my son dx'd with mixed epilepsy

[logan7504]

Hello all. I am new to this group. My son was diagnosed in april of 2006 with partial epilepsy with secondary generalized. He had 2 normal EEG's and then this past april, he had an abnormal and she swithced his epilepsy to mixed epilepsy. He does really well right now. We have him on keppra 140mg a day at this point. He has had a total of 6 seizure's that we have seen. 2 absence and 4 tonic clonic's. The first one happened on 1-1-06. Go figure New Years Day. Anyway, we were terrified that he was dying, Did not know what was happening. That one was febrile. The rest were not. We put him on keppra as of 4/12/06 and have only seen 2 absence seizure's since then. Mostly because of adjustments that needed to be done with the keppra. We are still scared every single day about this condition. We hate E. Logan is not even 4 years old yet and it kills us to think about the bad things that can happen. How do we deal with that part?

[Bernard]

Hi Logan, welcome to the forum.

I don't have epilepsy - my wife does. It took me a long time to find inner peace in dealing with her seizures. One day I just had an epiphany that I can only do the best I can do in any given situation and it wasn't productive to worry or fret about things that have not happened.

BTW, my wife completely eliminated her absence seizures with EEG neurofeedback (see links in my signature for more info). I would think 4 years old might be young, but possibly old enough to do it.

[Georgiagirl88]

Hi there!!
Welcome to the group. You absolutely came to the right place. The folks here are wonderful and so helpful. I am newly diagnosed as of this past fall. I have had these nocturnal seizures for yrs...but was misdiagnosed. I have learned so much from this group and it has been so supportive and helpful. Very informative and truly wonderful people!! Sorry your little guy is having to go through this..there are alot of other Moms and Dads in the group with children with E as well. Take care and I hope your little man is doing well!! : ))

Talk soon!
Michelle (Atlanta)

[tinasmom]

Welcome!

So sorry to hear about your son. There is nothing worse than feeling helpless while your loved one goes through a seizure. The best thing that I could recommend is that you learn everything you can about this disorder and you may want to contact a local Epilepsy Foundation for help and support. They should also be able to train you in what to do during a seizure.

[brain]

Logan!

So sorry to hear about your son, but welcome to CWE!
We hope you can find much resources, information,
insight, support, and much more - and in addition,
you can click on the Epilepsy Foundation Logo below
to be directed to the Epilepsy Foundation Website for
additional support and information as well - for many
of us are in both places.

And Tina's post is correct - there's a place where you
can find if there's an Epilepsy Chapter in your area as
well, and other information.

Make yourself a home here in CWE!

[CJR]

Maybe you're son is a little young to completely understand what is going on with his health but my daughter is 10 and I spend a lot of time dealing with the emotional side of E. with her. And what I've found is...I give really great advice! Now, if I can listen to my own advice I find I am more able to "deal".

I am constantly reminding my daughter (who is prone to worrying anyways) that in every situation you have a choice. Epilepsy presents you with many medical choices but very few emotional ones. You can choose to wonder "Why me?" and all the sadness that entails or you can choose to to say, "I'll tell you why because I can handle this and so much more."

It's not easy being a Mom on a good day and Epilepsy certainly complicates everything but it also can give you rewards that most parents don't get to see. Have you caught yourself smiling at your son when he's dirty or being slightly naughty? Have you looked at him when he's sleeping and been overwhelmed with gratefulness? I know I have. I'm not a terribly religious person but I do believe that we aren't given more than what we can handle. At the end of the day, I thank God for a good (seizure free) day or if need be send up a silent prayer that tomorrow will be better. And I congratulate myself because Good, Bad or Ugly I handled another day.

And I turn to CWE and other reputable Epilepsy sites for information, and more importantly...COMRADERY. It sometimes feels like a never ending battle and it's always nice to know that you're not in the fight alone. I know I need a place to learn, to vent, to hope, to wish, to laugh about Epilepsy. CWE has given me that release.

Take a deep breath and Congratulations...You Handled Another Day!

[BuckeyeFan]

Welcome to our house. Please pull up a chair and make yourself at home. I personally have had E for almost 27 years (since the age of 20). My past few months visiting this house has been the most educational and comforting in that entire span. It feels so good to be able to talk about my E openly and get honest answers from my new friends. I think you will find a great deal of info and support here, along with some humor and inspiration.

Welcome again!

[kayakmom]

HI and welcome!! I do not post here as often as I do on ecommunities of Epilepsy foundation, but wanted to welcome you here! So glad you finally have some answers! The Day to day dealing with seizures is so nerve wracking, you are so right!! You do need to learn the coping mechanisms that work well for you! You have had some wonderful advice already! I have been dealing with this awhile now. My son was 7 when he first had his first complex partial that generalized, but he was having seizures before that we just did not recognize them. I also have had seizures that were misdiagnosed for many years.

Learning to carry on with life is hard, but you need to try to do this. Allowing the kids to be strong (my son has sometimes taught me to bounce back from his seizures when I feel like hiding!) It can really stun you how strong kids can be! It is so important to keep being active and do things. Otherwise they will become vulnerable kids.

Hang in there! I hope the medications will bring control for him!

Ginny

[paradise survivor]

Aloha Logan, Allow me to chime in on the big welcome! You have come to the right place. I cannot begin to know your pain in having a child with E because I am the one with it and it didn't arrive till I was 37. I must admit I did not handle it gracefully...that took some doing and a couple of 'worse' scares to knock me back to 'grateful it's just E'. I am often a slow learner. I do appreciate hearing from the other side (that of caretaker) sometimes I forget how upsetting these d_mned things are. For me, I am unconscious so I don't realize the fear and anxiety. But one thing is for sure, the folks here care deeply, either as one who has or one who cares for...they are my rock

[skillefer]

Hi Logan! Welcome to the site! As you can see, we're a pretty friendly crew. I've had epilepsy ...actually, I was diagnosed with epilepsy when I was 3. I have tonic clonic seizures. And I used to have petite mals...which I outgrew. I have a wonderful husband, a Master's degree, and am a teacher. I also have a driver's license. The thing is...what MIGHT happen isn't something you should be fretting and worrying over. Deal with each day as it comes, and teach your son about what he has, and how to deal with it. For some of us on the site, we deal with E by laughing. And others of us don't. But how you respond will influence how your child reacts to E. Just my 2cents. Again...welcome!