Has anyone had good seizure control with Keppra for grand mal seizures???

Keisha - posted on 05/06/2012 ( 28 moms have responded )

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My 4yr old daughter had 4 grand mal seizures in 6 weeks. Three were while she was awake and 1 while sleeping. She started with 1 tsp(100mg) and she is now taking 1 1/2 2x a day. It's now been seventeen days since her last one. I really hope that this recent increase will help. I've also started her on a regular sleeping pattern and have been making sure she takes her medicine everyday at 10am and 10pm.

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Alma - posted on 05/07/2012

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Please do research on Keppra in it's generic form. It caused my husband to have seizures and they stopped once a different medication was prescribed. Both my husband and daughter have generalized (grand mal seizure) epilepsy and both take Depakote (generic). It has worked great for both of them. In fact, Depakote or valproic acid, is the number one choice for this type of Epilepsy. I did lots of research and went to three different neurologists to get seizure control for my husband. There is supposed to be weight gain, but to us, those extra pounds are completely worth it. Hope this helps.

Michelle A - posted on 06/24/2012

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Keppra has worked for my Daughter. No Generic says her Nero. I have to jump thru hoops for the insurance to pay but they do. We have been about 1 1/2 yr w/o any seizure activity. What a blessing she is and I only see her being difficult when the dose is changed. We have been very fortunate. Good Luck.

Beth - posted on 06/18/2012

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@Keisha, my son takes Keppra and has been since his onset about 1 year ago. He went 6 moths without seizures, then had one grand mal, we upped the Keppra, Five months later he had another, we upped the Keppra, one week after that he had two more, again we upped the keppra. He is now on 1500 mgs AM and 1250 PM. He is having terrible mood swings and keeping up with his growing body is hard but Keppra works for us. We just started B6 in hopes it will help his disposition, it is so sad. We were so controlled and now we are not. If B6 does not work we will lower the Keppra and add another drug, but hopefully it will not come to that. I am told that as you enter puberty epilepsy becomes harder to control My son is 8.5 still years away but he is growing so quickly at this point. My understanding is that Keppra does not pass through the Liver so it makes it a very safe drug long term with little lasting side effects. It also does not interact with any other med your child may be taking or may have to take.

Tammy - posted on 06/12/2012

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white blood count and liver count are normal especially for Zarontin don't worry. I used to have to have mine tested and now my oldest is getting his tested. They only test my son's every 3-4 months so about as often as you would see your neurologist

Tammy - posted on 06/12/2012

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Hi- I have had both absence and grand mals. My absence started when I was 6 and the grand mals started when I was 13. I was orginally put on Depakote because it was the desired drug for seizures. I gained 30 lbs in a month they took me off it and put me on Dilantin and soon Zarontin which I loved as a teen because I lost weight and having been originally skinny I enjoyed getting back. However when the grand mals started they put me back on Depakote and I gained 60lbs in 2 mos the second time and by the end I was almost starving myself. My grandparents argued with my drs over my weight and finally removed me and changed drs all together. My new nuerologist put me on Keppra. Keppra though it hasn't helped me lose weight I haven't gained any either. its controlled my seizures although I have to be on Topamax as well. I've been on the two for over 10 almost 15 yrs now. I can drive I do have a little insomnia. But like I said most of my problems came from Depakote. Now my oldest who is 4 now is on zarontin for absence seizures and my youngest was born with a cleft lip and palate but I think that happened more because I was not taking a prenatal vitamin when I conceived.

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Midget - posted on 09/20/2013

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My son first started having seizures when he was nine he was put on Epilum and he was seizure free. Another specialist decided to change his meds to lamotrigine and within one year he had 5 grand mals. He then went back onto Epilum and again was seizure free for years then my son refused to take any meds and was seizure free for 6 months.
I had an eeg done on him just to be sure he had no electrical activity but he did so they decided to put him on Keppra he has had 3 grand mals in one month, We are now in the process of putting back on the Epilum which has always agreed with his system. Keppra and Lamotrogine seem to bring the seizures on with my son.

Rachel - posted on 07/04/2013

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My daughter started experiencing grand mal seizures last year. Only while sleeping. They have her on Keppra 500mg 1 twice a day. She has been seizure free for 10 mths. But I have to say I think I know what was causing her seizures, MSG, so I keep her away from that. So is it the Keppra or MSG free diet I don't know.

Breanne - posted on 06/10/2013

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Karina, how old is your son? My 14month old wears a cute helmet when the timing is appropriate and necessary. It's made by Thudguard and has cute ears on it. It's a little goofy but it has saved her from at least 4 falls that would have definitely been traumatic to her head. If your son is older he probably won't wear it, but if he's a toddler he doesn't know the difference and who cares what others think when it comes to protecting your LO.

Jessica - posted on 09/16/2012

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My 7yr old son also has grand mal seizures and was taking Keppra but because of his mood swings I asked his dr. if he could change it and he did now he is taking trileptal 2x a day 5ml, I thank God that he hasn't had a seizure, his first and last seizures occurred 3 months ago. I will keep your daughter & your family in my prayers.

Karina - posted on 08/13/2012

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My son has seizures, I think about the future and what can I do, if he was to have one and no one was around. Anyone with children who have founds ways to help their children not get hurt when they have one. Sometimes seizures can occurs while their awake and playing.
Thanks.

Kelsey - posted on 06/27/2012

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We honestly had a horrible experience with Keppra. Sarah went on it about 3 years ago and she was almost constantly unhappy and crying. This is not like her as she's normally an extremely happy child and never cries. As well while on Keppra she had an extremely frightening seizure where she stopped breathing (we were on family vacation). Her and I had to be air lifted to the nearest children's hospital.

Luckily since this time the doctors put her back on clonazepam.. She is also taking lamictal and her seizures have been very well controlled. For a while we were in and out of hospitals it seemed like every other week. She mainly has small seizures now or ones that she successfully comes out of when we give her the diastat. Even those have decreased in quantity. I Thank God that she hasn't had a seizure related hospital visit in about 7 months.

Katrina - posted on 06/12/2012

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my son keeps having small breakthroughs right now, just about anytime he goes out in the heat. But it's been just over a week since his last grand mal, at least. I'm curious about other meds everyone has tried, but might poke around in the forums a bit more. I still have two with active seizures and my husband still has them as well.

Patricia - posted on 06/11/2012

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My daughter has had absence, grand mals, ones in her sleep, etc. she has had several different ones. On saturday we were home all day because she had them back to back several differents ones and it hasn't been a week since her last set of seizures. So the meds she is on is not controling them. Right now I do not know what to do other than pray for God to put His healing hands on her. So we are still in the trying meds stage since we found a new doctor.

Keisha - posted on 06/08/2012

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Thanks for the replies!! Since I've posted she finally went 28 days with no known seizures and then had three grand mals in one day. I also thought she may be having absent seizures and myoclonic seizures but wasn't sure until we got her test results back this past week. Her 30 min sleep deprieved EEG results showed she was having absence seizures so the dr confirmed that and the myoclonic ones. He added zarontin....he said to start her off with a 1/2 tsp at night for a week and then 1/2 tsp morning and night. The first few nights on it were terrible. I will start the morning dose tomorrow. I'm worried how she will do on it during the day. So now she is taking that plus her keppra at 2.5 tsp twice a day. Not sure how I'm supposed to tell if the new meds are helping the petit seizures as they are not so easy to notice. The keppra hasn't been so bad....she does have days where she is a lot more ill than others though. Some days she seems really reserved. She had her first blood workup done yesterday since on the meds and I have the results. It says her keppra level is high and some other areas are low. Can anyone tell me what is the normal blood work while on these types of meds? He had her CBC, keppra level, electrolytes, and liver done. Is that the normal? How often is she going to get this blood work done?

Patricia what type of seizures does your daughter have and are they controlled now or does she still have them back to back ones once a month? Are the back to back ones grand mals? The three big ones my daughter had back to back in one day were terrible....

Patricia - posted on 06/08/2012

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Keisha, My daughter started having seizures a little over a year ago. They started her on Keppra. But she became someone else and mean. But it did help her when it came time for school work her grades improved. But she didn't like being mean and wanting to fight all the time so the dr changed her to lamotrigine. Which hasn't help either so now she is on the Lamotrigine and zonegran. She has had several different types of seizures and once a month she goes an entire day having seizure back to back. this is while sleep and awake. I think that the Keppra is good one it just changes their mood to being mean. With the meds she is currently on one of the side effects is real bad headaches. So do the research on all the drugs before letting them put her on them. Here is a list that I found of different drugs:
Dilantin, Phenytek, Tegretol, Carbatrol, Phenobarbital, Mysoline, Zarontin, Depakene, Depakote, Valium, Felbatol, Gabitril, Lyrica, Neurontin, Topamax, Trileptal, What you don't want is the drugs that are habit forming.

Katrina - posted on 06/07/2012

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Keppra never really helped my son when he was on it, but it sure made him an angry little boy. Is this his first med? How many others have you tried? Right now we are back on only Lamictol for his seizures, and haven't been able to find a secondary med to better control them yet - though our neuro has a couple options. He's my only guy prone to grand mal seizures, my other guys tend to have partials.

Sarah - posted on 05/09/2012

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Hi, my son weighs 17kg and is on 3ml in the morning and 3.5ml in the evening as his seizures are happening in the early hours. At best he would go 10 to 15 days without a seizure at worst it was 3 in a day, and he would have to have diazapam to come out of the seizure. His seizures are also very quite he makes a grunting sound while jerking all over, although he has had 5 different types of seizures which makes it difficult. We have been told he has complex epilepsy which means its complex to treat.

I really feel for you because it is so difficult and you feel as though you cannot take you eyes of them for a second. I really hope that Keppra works for you too. He is on keppra not the generic, I also did not know there was a difference. Its overwhelming how much information you need to take in and how little answers there are. I keep getting told its trial and error, which is difficult when its your child going through it.

Keisha - posted on 05/08/2012

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Hello Sarah, do you mind me asking what his weight is and the dosage he takes? So far this has been the longest for us between seizures since they have started, almost 22 days. Although she did wake up one morning this past week and had wet the bed....so that has me a little worried. I let her sleep in the bed with us but the one seizure I witnessed before at night I wouldn't have none about it if I hadn't been awake. It was more like a petit mal seizure I guess. She had a gurgling sound with jerking all over but it was mild and not loud. It lasted for about 2-3 minutes and she was back to sleep(this happened about 4-5 weeks ago). She never new she had one. She hasn't wet the bed in almost a year so it had me worried when she woke up Thursday morning and told me she was wet that morning. I hope that Keppra works for him and controls his seizures. How often was he having them in between times? Does he take Keppra or the generic? I'm going to be sure to ask that we do not get generic next time. I did not know there was a difference until reading about it.

Sarah - posted on 05/08/2012

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hi, my son is almost 4 and has been having grand mal seizures for a year now. He has had 40 seizures so far. His medication was changed from sodium valporate to keppra in march and since he has been on the highest dose for his weight he has not had a seizure now for 5 weeks. so far it seems to be working!!

Jackie - posted on 05/07/2012

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Hi, My daughter is 18 and she has grand mal seizures. We tried both the generic and keppra, she is now weaning off of lomtrogine she had a grand mal well taking it and she is taking zonegram (generic). it is working so far but does have some side effects like stomach ache and fatigue.

Keisha - posted on 05/07/2012

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Jackie if you don't mind me asking how old is your daughter and what types of seizures does she have? Did she take the generic of Keppra? What does she take now and does it control them like the Keppra did? I'm sure it was heart breaking seeing the meds turn her into someone totally different. The first few weeks was rough for us but thankfully it got better. I just hope now they will work. It's just a waiting game I guess. I hate not knowing if the new increased dose will help this time or not.

Alma - posted on 05/07/2012

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HI Keisha. No hair loss for my daughter. She is ten and was diagnosed at 5. My husband's hair loss is plain ol' genetics.

Jackie - posted on 05/07/2012

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Depakote in females I'm not sure about the effects with men but will cause birth defects if they choose they ever want a family. My Daughters neuro put depakote as a last resort for her.

Keisha - posted on 05/07/2012

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I've heard that Depakote can cause your hair to fall out also. Has this happened to your husband or daughter? Thanks so much for the advice!!

Jackie - posted on 05/07/2012

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It did work they started her on a low dose and let it build up t but the mood swings and anger was more then she wanted to deal with she also tried the b6 with it and nothing improved. She didn't have seizures while taking it but seeing my child change into an unhappy angry person was heart breaking.

Keisha - posted on 05/07/2012

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Did it work for her the first time, or did ya'll have to find the correct dosage before it finally controlled them? She has been taking it since the 21st of March and at first it had her really tired and ill. Now she seems better. I give her vit B6 with it and I think that has helped. Each time we increased her dosage she would be cranky but after about a week it got better. She will still have mood swings or get extra ill every once in awhile over something little but she did that before the medicine. Thanks for responding :)

Jackie - posted on 05/06/2012

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Keppra worked for my daughter to control her seizures but made her a very angry person. She did not like being not herself and a change was made.

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