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No more Depakote! Party time!!
Fri, 03/04/2005 - 13:23I've not posted a lot here on the site, but I wanted to let you all know what we're doing on Friday night. My 8 yr. old daughter was diagnosed with complex partial seizures on November 2 and was immediately put onto Depakote. To say that we hate how that medicine affected her is an understatement. After meeting her neuro on December 20, he wanted to switch her to Lamictal....so we began the long process of weaning meds. Krystyne is normally a very happy, active, cheerful little girl. Everyone who meets her loves her. She's just got one of those personalities. Well--that all began changing after the Depakote was started. She didn't have any really bad reactions or anything like that, and her seizures stopped after a few weeks. She was just tired all the time. She wasn't telling jokes and making people laugh. She went to school, played basketball, wrestled, and slept. Sometimes she would have to take a day off of school just to catch up on sleep. It broke my heart to see my little girl like this. Well, last week I noticed a change. She'd already cut out 2 doses of Depakote a day and was only taking it once a day. She was laughing and telling jokes. She was able to play the ENTIRE basketball game on Saturday. She wasn't tired. She didn't want to snuggle up on the couch at 6:00. WOOHOO!!
So--we decided to throw a "Pink Party" on Friday to celebrate that last dose of Depakote being taken. (Depakote is a pink pill for those of you who have not taken it) We've invited family and friends over, and all the food will be pink. We've invited people to wear pink if they would like to, and to also bring something pink that they HATE to throw away when Krystyne throws away the remaining pills she has. We're also going to release pink balloons--as are friends and family around the state. We can't wait for this party...and I just wanted to share some fun with you guys here!
Veronica (and Krystyne)
RE: No more Depakote! Party time!!
Submitted by bugsmom on Thu, 2005-03-03 - 10:44
Our house is really getting excited about this party. Some of Krystyne's very close friends from school will also be here. It took her about 2 months to feel comfortable with what's going on, but she's open about her epilepsy now. She realizes that she was dealt a hand and she needs to figure out how to make it work to her advantage. Around here, we live each day to the fullest. You see, I have a kidney disease for which there is no cure. I am fine right now, but later in life it will begin to affect me. My girls have seen me not give up and feel sorry for myself when I'm in pain. I keep going. In fact, there's an experimental drug being tested now, and I'm on the list for Phase 3 of testing. Krystyne sees me be open about my disease, so she is now open about hers. We believe that education is the best way to deal with things. Krystyne and her sister, Virginia talk openly with their friends about epilepsy. They answer the questions they are asked, and if they don't know the answer--they'll find it and let the kid know the next day. Krystyne's entire basketball team knows what to do if she has a seizure. So do most kids in her class. She's been lucky to not have been picked on, and I believe it's because she's been open with the other kids.
My hope is that the Lamictal continues to work. She's been gradually increasing her dose since the end of December, and it seems to be working. All adults in her life know what to watch for, and so do her closest friends. She's got an amazing support system, and that's to her advantage. She's been seizure free for 3 1/2 months now, and we have 20 1/2 more to go before we get to see if she can go off her meds. We'll keep our fingers crossed, and continue our education of others in that time. Thanks for all of your support here. It's great to know there are others going through what we are. In our small town, I've not seen another child with epilepsy, so you guys ARE our comunity support. Thanks!!!
Veronica (and Krystyne)
Our house is really getting excited about this party. Some of Krystyne's very close friends from school will also be here. It took her about 2 months to feel comfortable with what's going on, but she's open about her epilepsy now. She realizes that she was dealt a hand and she needs to figure out how to make it work to her advantage. Around here, we live each day to the fullest. You see, I have a kidney disease for which there is no cure. I am fine right now, but later in life it will begin to affect me. My girls have seen me not give up and feel sorry for myself when I'm in pain. I keep going. In fact, there's an experimental drug being tested now, and I'm on the list for Phase 3 of testing. Krystyne sees me be open about my disease, so she is now open about hers. We believe that education is the best way to deal with things. Krystyne and her sister, Virginia talk openly with their friends about epilepsy. They answer the questions they are asked, and if they don't know the answer--they'll find it and let the kid know the next day. Krystyne's entire basketball team knows what to do if she has a seizure. So do most kids in her class. She's been lucky to not have been picked on, and I believe it's because she's been open with the other kids.
My hope is that the Lamictal continues to work. She's been gradually increasing her dose since the end of December, and it seems to be working. All adults in her life know what to watch for, and so do her closest friends. She's got an amazing support system, and that's to her advantage. She's been seizure free for 3 1/2 months now, and we have 20 1/2 more to go before we get to see if she can go off her meds. We'll keep our fingers crossed, and continue our education of others in that time. Thanks for all of your support here. It's great to know there are others going through what we are. In our small town, I've not seen another child with epilepsy, so you guys ARE our comunity support. Thanks!!!
Veronica (and Krystyne)