Hang in there!
Ginny
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
Donna
Hope4healing-
welcome to HW. So glad you have come here for support. There are many people here that come for the same reasons you did. I definitely know the feeling of denial and loneliness. The more you can learn about epilepsy, the less you will feel burdened by it. The more you will feel that you can help your daughter as well as yourself.
You described it right when you said "numb" - it was hard to describe the feeling when the doctor gave me the diagnosis and then I had to deal with it. You feel kind of frozen at first. Maybe it's because I sensed that people looked at me funny when they learned I had epilepsy. And I knew things were never going to be the same again.
But what has really helped me is to talk to others. To educate others about epilepsy. It also helps to talk to someone you trust about your feelings and how you are dealing with things. Like Kayakmom said- you develop coping skills. It does make a difference.
Be good to yourself. Take time for YOURself. This is difficult and you need to have energy to make it through this ordeal too. Who cares for your daughter in addition to you? Work together, you will be stronger when you can share the victories as well as the defeats. What does get easier is knowing that you've made it past one more medication change, one more test, one more appointment...after a while, you start knowing the routine.
Yes, you do need to be strong... but you need to be strong for YOU FIRST. So you can be strong for HER. Do what you can to reduce your own stress, eat right, get enough sleep, get HELP if you need it ( a sitter, housekeeper, whatever), have a friend help you with chores/shopping, etc. The more you feel in control of things, the better you'll feel and can cope. You ARE going to make it.
((((HUGS)))) Glenda
complex partial seizures since 22