New mother to the seizure scene.

[atfp4554]

Hello, my youngest daughter is 3 years old and has seizures. The first one was so mild and there was no twitching or jerking that I thought she just passed out from exhaustion since it was bed time and she had a long day. The second one was at bedtime too. We were reading a book and she suddenly said, "Mommy!" I looked.down and her hands were like claws and her lids were fluttering. I've never seen anything like it. She was like a rag doll and groaning and gurgling. We called 911 and ER said nothing major caused it.

Today she saw her new neurologist for the first time. Her eeg was normal bit they want to do another one next week after we've kept her up and woken her up early. They want to start a medication that is known to cause mood changes that may make her act bad. Then if that happens they want to switch to a different med that may be hard on her liver and kidneys so they'll have to do monthly blood work.

I'm a wreck over this. I have no basis for knowledge. I've never known anyone with seizures and so I've joined this group to get a support system. I need someone to tell me it's going to be ok. I'm scared and I just don't know what to expect. My daughter is only 3 so I think it will be a while before she's old enough to tell me it's about to happen. How do you guys deal with it? I need some encouragement.

[02nana07]

 I think the 1st med you are talking about is keppra and most people I have talked to say it goes away after the meds level out in your system but most people don't give it long enough. 

[atfp4554]

My husband went to the appointment so I don't know for sure what it is. He was told by the doctor that 40% of children experience the side effect and after about 2 months, half of those children resume normal personalities. We would keep her on it as long as instructed but I'm scared to death of the side effects.

Quoting 02nana07:

 I think the 1st med you are talking about is keppra and most people I have talked to say it goes away after the meds level out in your system but most people don't give it long enough. 

[02nana07]

 My son is on it and never had the rage but I know others that have and they quit before giving it a chance.  I know the drs here will change very easy if anything  bothers a parent so sometimes what could have worked isn't given a chance.  My sons problem was he slept all the time at 1st and the dr was going to change to one with bad side effects but I told him to give it more time and it has worked great it just took time to adjust.   Go with your gut and speak up for your child but gives the meds time to level out and their body time to adjust and everything should work out.

Quoting atfp4554:

My husband went to the appointment so I don't know for sure what it is. He was told by the doctor that 40% of children experience the side effect and after about 2 months, half of those children resume normal personalities. We would keep her on it as long as instructed but I'm scared to death of the side effects.

Quoting 02nana07:

 I think the 1st med you are talking about is keppra and most people I have talked to say it goes away after the meds level out in your system but most people don't give it long enough. 

 

[Mipsy]

Yeah the med sounds like keppra. My son is on it and doesn't have the mood side effects :) it doesn't hurt to try it. I was scared starting meds for epilepsy with my son, I just bawled. Imo its scary cuz it has to do with the brain, but starting seizure medication is the best thing we ever did. We didn't fully realize how much the seizures were holding our son back til he started them and all of a sudden he blossomed as a child! If you aren't comfortable with it, seek a 2nd opinion, there's nothing wrong with doing that :)

[atfp4554]

Thank you, everyone. I'm starting to come to realize that this seizure thing isn't the end of the world. There are worse things and we'll deal with whatever comes.

[mcphersonkj]

As soon as I read this my thought was Keppra. My son took it and he turned into a devil! When we went back to the neuro doc I told him how my ds was acting he changed him to aanother drug. It was alto better. We did a yearly meg and it showed up that he was having constant seizure activity in the brain. I tried to get the doctor to do something different fir my son and he refused so I found a new doctor at a new hospital 3.5 hours away. They did more test and figured out that the other Dr had not even diagnosed him with the right kind of epilepsy and the correct type or seizures. So he is now on depakote and doing wonderful.
Btw my son has seizures that sound like you dds. He dose not convulse at all. His eyes roll back and he goes completely limp all over his body then looks like he is completely a sleep but can not be woken up.
Hope they can figure out the right med for your DD and get her diagnosed correctly.

[ChutterButter]

Hi there :) I agree with 02nana07. I do believe the first med you are referring to is Keppra. My son was on that for a short time and had no issues though many others have. I could be wrong but the second medication sounds like Phenobarbitol which is what my son is on now. It is very hard on the liver and the blood draws can be the same. There are also a lot of side effects. We are trying to switch my son to Keppra to avoid the side effects of Phenobarb as they are harder on the organs especially the kidney. Though the meds can be so frustrating with all the side effects and what not it was for me a blessing. Aj was having 5-25 seizures a day before he was medicated and it made me feel so helpless. There was nothing I could do for him. Once he adjusted to the meds he was seizure free, with the exception of occasional break through seizures, and for me it was a sigh of relief. I hope things work out for your little princess :) Welcome to the group

[atfp4554]

You all are geniuses. The drug is keppra. We had a second EEG and they still found nothing. They said instead of testing and testing (which has upset her routine and made her a monster anyway) they are just going to see if they can get the seizures under control. She had a third seizure and now we're doing keppra. Three days in and I can't tell if it's meds or the change to her schedule but I have noticed anger issues. We're going to keep up with meds until her next visit on the 31st. For now they're calling it rolandic epilepsy (the good one as my husband calls it) but stress that without eeg results to back it up, they can't be sure.

[billiejo79]

My first thought was actually Depakote. That is what my dd is on and she went from the most loving 2.5yr old to a little devil and 8yrs later she still has anger issues and mood swings. The medicatoin works great as far as controling her seizures though. She has been almost 3yrs completly seizures free. An she is actually showing signs of out growing it.

[MyMonkeyMadness]

PLS PLS PLS PLS  Hang In there I have three boys all with Epilespy Youngest is 10 months oldest 8 yrs our Middle is 6 yrs   EVERY  Drug will have some kind of side effect just remember take it Slow give it all time we have only had one issue with Keppra that was with our Youngest 10 months old it was the first drug he was on and he ended up with the "Keppra rage" and in the Evening would bang his head into his crib... I dont know if you are on fook buFriend to talk to I'm here add me as a friend