Hi - my daughter Rebecca (age 21 - developmentally at age 4)....just started on 500mg of Keppra 3 weeks ago. Seizures are less but this week she has been very quiet, irritable, has pushed and tossed a few items. Not her usual nature although she has some of that now and then. Does this sound familiar to anyone and since it has been three weeks since she started, should she be passed the side effect stage. Truly appreciate any input........Loving Mother of Rebecca..........Paula

Did the doctor start her out this high. Tripp developmently delayed also started out on Keppra at 250mg night only. He will stay on that for one month then will add 250 mg day also. I'd call your doctor and ask at least.
(((HUGS)))
Betty

Paula, I truly feel for you. My oldest son is developmentally handicapped,but does not have seizures. He was on Keppra several years ago for bi-polar disorder and it seemed to work ok for him. I since have developed seizures and Keppra was one of the meds. I tried. It did not work for me at all! I was seizure free for a couple of months, but suffered severe mental side effects. I was to the point of being psycotic on it (approx 3 mos.) I can't say whether it will work for your daughter or not, but I will say just keep track of ALL unusual behavior no matter what med. she is on. They all have different effects on everyone ,and everyone reacts to differently to all of them. You know your daughter better than anyone,and if you feel something isn't working right, don't be afraid to say so. My heart goes out to you and your daughter. Wish you best of luck with everything.

Laura

Thank you Laura - it is so difficult to track since Rebecca cannot tell us how she feels. I was worried about this drug way before we put her on it and had previously decided that the seizures were better than the horrible side effects of Keppra. Then my husband and I decided we owed it to her to try this drug (she has been on every other one and still seizured)...we have also tried the VNS and had a corpus callosotomy. Have also tried the ketogenic diet. So, I am now wondering if we should wait to see if she levels out on keppra. We were told to increase but have put that on hold at this time. Rebecca is very underweight so we are hoping it does not make her less hungry. Thanks again...........Paula

Thank you Betty for responding.....yes he started her out on 500mg with increase after two weeks but we are not increasing until we feel is necessary. I guess we will give it some time to level out..........thanks..Loving mother of Rebecca..............Paula

Paula we just started Keppra a couple of weeks ago as well. I was also concerned with it. Many parents I talk to have had good luck with using Vitamin B6 with it to help the mood.

So far we see some extra moodiness, but he is a teenager with TLE and FLE so moods can be part of it too.

It is SO much harder since she cannot tell you. Hoping things can settle down. Best thing I see with Keppra is that when it works it seems to start quickly....

Hi Paula,

My 11 year-old son has been on Keppra for a little over a year now. He also takes Depakote. I have noticed some anger issues and such. He seems more irritable at times. Of course he is going into puberty and is having to deal with a relatively new diagnosis of Epilepsy. The meds have really affected his ability to learn too. He's not very motivated much of the time. I'm not sure if this is a result of the Keppra or the Depakote though. We just had another EEG on Thursday. It could be that he is suffering from subclinical seizures or other abnormal brain wave activity that we don't see. We won't know until April when we go back to the neuro. As far as tonic clonics (grand mal) go, Keppra is what stopped them. For that, I'm thankful.

I'm sorry to read that your daughter is having a hard time. Epilepsy can be a very complicated disorder and with her other issues it must be very hard on you. I will pray that things get better for her, and you.

Julie

Hi and thank you for your replies. I think we will try the B6 - nothing to lose. Her Tonic Clonic seizures have improved at this point. I am still trying to figure out the mood. She got her period yesterday which could explain the lousy week she had.

I am trying hard not to look for excuses for behaviour but I do know for sure that if she is going to be irritable and not seizure, she gets far less out of life than if she seisures and has fun in between. I will have to give it some time.

Loving Mother to Rebecca...........Paula

For starting Keppra, the docs like to push it FAST. Start the patient out on 500 2x/day usually and ramp up from there.

It's up to the patient or caretaker to speak up if they note problems.

I did not have problems on Keppra until Dr Idiot at the city Hospital clinic increased me up to 4000mg/day. I even called him back less than a week later and reported symptoms I was having due to the increase. He brushed it off claiming "It will go away". It didn't until I checked myself into the ER, had levels drawn, and they told me to reduce my dose. The symptoms went away within 24-48 hours of the reduction... about 6 WEEKS after the problems started.

As for problems ramping up on Keppra from what a friend told me of her ordeal... She had to increase at 250mg at first. 500 was too much for her system to handle. At one point near the end of increasing she had to break the 250's in half until she reached the most her body could handle (something like 1600-1700mg/day range).

Thats something to consider talking to the Dr about. Using the 250's if they intend to increase the Keppra to avoid possible problems that she may not be able to communicate. And take it SLOW compared to the typical rate of increase used with the drug allowing your daughter to adapt to changes in the medication.

Hope that helps out on Keppra.
(now lets see if I am reduced on it for the first time in 6 or so years!)

--Travis

I was on Keppra for approx 6 weeks for a seizure disorder and had severe mental side effects: depression, irritability, aggressiveness. I was crying almost everyday. Very quiet and sad or very irritable with very little patience. These side effects are very common and are even referred to as the "Keppra Rage". They are not temporary. My doc is in the process of getting me off Keppra ASAP - I can't handle it!

Tulip, re your post:

When I was bumped from 3000 to 4000 I started to feel mildly depressed. Thats why I called the Doc right away. It slowly spirled to the point I wanted to be watched by my friends as much as possible. When It came to the point I felt unsafe alone that one night, I was not thinking of harming myself; just it felt a LOT worse. I then decided to be brought into the hospital.

They almost didn't believe me when I told them my dose. Thankfully bloodwork confirmed it!

The best I could describe the symptoms after being stable at 3000, and increased to 4000 was a slow downhill spiral to mild depression. No outbursts in my case. But definately after a month I began to feel unsafe alone. The reason why is hard to explain. If it was safety, or what have you. I was never one to harm myself or have thoughts of that nature.

I was also on 1200/day of TegXR and (thinking) 300 of Dilantin. Going back I have to try and THINK at times what meds I was on.

--Travis

Hi tulipgirl - thanks for your reply - what dose of keppra did you start on and what are you on now?

Hi Paula,

I know you are getting alot of info here on Keppra. Katie was on Keppra as duo therapy (with Neurontin) for 3 years before her surgery. She was on 3000mg/day. After having been off it now for 2 years, I can see where she possibly had some symptoms of depression, irritability and mood swings (crying). But she was also at the height of puberty (ages 12-15).

However, her symptoms weren't unmanagable. And compared to other meds, she tolerated Keppra fairly well. It didn't cause her to have weight or sleeping issues either.

It is so hard to read everyone's comments about meds here, when they affect everyone differently. I know it must be hard with Rebecca not being able to tell you exactly how she feels. But since you're her mom, I'm sure you can tell if she is not 'herself'.

I had to stand up to our neuro of 13 years a few times and say NO to some meds. That is my job. He wasn't living with her 24/7 or going to school with her to see the side affects. I was her advocate and had to make the best decision possible. It is a very fine line to walk sometimes.

Good luck and all my best to you and Rebecca... :angel:

Vicki

Vicki - such great advice - thanks.........I have spent many years saying no to drugs just because of side effects but I guess we are second guessing it all again........hate that............you are right........my gut feelings about how she is feeling are usually the right ones. I find her Dr.'s are textbook people at times and side effects that are not a big deal to them are truly a big deal to Rebecca. My husband and I are a good team but we feel like we need to explore more for Rebecca at this time..........confusing it all is as all of you know............loving mother to Rebecca.............Paula