Feeling alone....I'm new

Hello, I'm new here. My daughter was recently diagnosed with generalized epilepsy following a grand mal. She's been on several medications and will be switched again after we get an EEG confimation of that which we already know, that her current medication isn't doing anything for her.

 

I feel so alone right now. I hate it when people ask me what's wrong with her and seeing them wince when I say epilepsy. Then you have to explain to them about absence seizures, medications, side effects.......everything that seems to go hand and hand with epilepsy. I've tried slipping into denile. That didn't work very well when I looked up every so ofen and would see my daughter staring into space. Then I tried just feeling sorry myself..... doesn't work so well when your child needs you. I've tried being strong for my daughter and putting up a good front. That's really hard when you have to go find someplace to be alone and just cry.

 

Now I'm just numb. Things seemed to be so much easier when we didn't know what whas going on and lived in ignorant bliss. I know this sounds like a huge pity parade but I need to know this gets easier with time. I need to know that even if she's having over 100 petite mals a day and a grand mal a week that we'll be OK.

 

When will that happen?

Hope,

I have had epilepsy for many years now. At firts petit mal and then in 1993 i had my first grand mal. I was put on Dilantin and it seemed to work for awhile. Then out of the blue I started having multiple petit mal and grand mals. Sometimes I would have up to 20 GM's and way too many PM's to count in one week. The docs added neurontin as a back up. Things seemed to settle down quite a bit. I have not had that kind of problem since then. I occasionally have a seizure but I have gotten pretty good at figuring out when then are going to happen. Everyone is different. You need as much support as you can get as does your child. Ignore the ignorant responses. I was devasted for sometime when people would ask and I would respond by sating epilepsy. For many people the thought of a seizure conjures up what to them are scarey and unpredictable images. Simply stated it is a short circuit of the electical impulses in the brain. I wish more was done to educate the public particularly in schools so that children would grow up with the acceptance that we all need to possess to nurture one another in our world today. It may take some time to sort out what med is right btu it will happen. If you are not happy with your childs neuro change. You will need to develop a trusting relationship with that doc and your child will need to feel comfortable with them. Vent as much as you can, and give your child that opportunity to do so as well. Please don't ever not ask for support it is so crucial that you don't try to do this alone.
Keep us posted.
Hopeful and caring thoughts,
Donna

Speaking for myself, I know how I feel today after my parents mostly my dad were and are in complete denial of my condition.  I was diagnosed with petit mal seizures at 14 and am now 34 and it wasn't until just recently I actually started telling people...maybe I would have been a little braver if I'd had better support from my parents, that's what I wanted most...my mom talked of it occasionally when she fealt she had to and my dad was and is completely ignorant to it, to this day...it is very difficult...if your own parents cannot support you, how are we supposed to be able to find support in a friend, we end up living in secrecy feeling something is wrong with us, when in fact it could be much worse....there is always someone worse off...it's a big vicious cycle, because our parents couldn't handle it or learn how to deal with it, we end up suffering and feeling,...too many emotions to describe

 

whiskey girl