Keppra- side effects in school & resources needed

Sandy - posted on 10/16/2012

Heather .. Keppra is very evil to many many people. Trileptal has been the friendliest drug over the past 13+ years. I recommend giving him 1 1200mg capsule of Lecithin every day. It is over the counter and is for brain and nerve function. It helped my son a lot!!! He went from seizures every day to one every couple of months now. He is still on his seizure drugs but was still having seizures at that time. I am lowering him Vimpat slowly because my son is have behavior issues towards my mom and I and I need it to stop. All seizure drugs come with side affects, we just have to sift through them to find what is correct for our child. Good luck. Sandy Lora



Go go www.youtube.com, search Joey Lora, Miracles Do Happen. It will give you inspiration after seeing what my son has been through so far.

Heather - posted on 10/15/2012

We started my son on Keppra 2 months ago, 125 mg twice a day at first. He seemed okay at that dose, a little distracted and tired but mostly able to function. When the seizures continued, we went up to 125mg in the morning and 250 in the evening after which we noticed he started getting angry about nothing at all. One time, he argued with me for an hour about getting in the car to go home after Aikido practice. I know he was hungry too and wanted to go home, but he just wouldn't/couldn't get in the car. After that incident he said he wanted to go but couldn't. It was weird. Still, we wanted Keppra to be the med that would work so we kept trying. Then the upped his does to 250mg twice a day and he went off the deep end. Getting mad about nothing at all, hours screaming, making threats, breaking stuff, hurting himself and us (parents). There is a hole in his bedroom wall now. His DR wanted us to see behavior health straight off, but i pushed for phasing out the Keppra after reading a lot online. These behavior changes seem to be a rather common side effect. After dropping him back down to 125mg twice a day, my son is already showing improvement. If you think your daughter's problems are related to Keppra, don't wait. Push for it to be phased out immediately!

Joy - posted on 10/14/2012

My son is 10 years old and only recently diagnosed with epilepsy,after years of trying to convince doctors that something was very wrong. He had his EEG mis-diagnosed,and the positive result has only just come to light months later when i asked our GP to investigate his symptoms again. He started off on Carbamazepine,but unfortunatley he had a severe reaction when it was increased to 10mls. He has now started on Keppra and to be honest im really quite concerned after reading these posts,and i will be keeping a very close eye on him.

Sandy - posted on 04/29/2011

Jesse, It seems like the seizures she is having could be coming from the occipital lobe, causing her vision to be temporarily blinded. Get a different doctor. Any doctor who refuses to look at ALL aspects is NOT worth putting your childs life into his/her hands. Good luck.
Sandy Lora

Jesse - posted on 04/29/2011

Kelly Daley,

I've also had an episode with my daughter when she claimed she couldn't see. She woke up one night and came into my bedroom complaining that her eyes were not working. I asked her what she meant and she said that every thing was black and she couldn't see. After about 5 or 6 minutes she said she was fine and could see well again. Since she'd been sleeping, I assumed she hadn't fully woken up and had some sort of weird dream. She was about 6 at the time this happened. Then she experienced several episodes of absence where she would stare off into space for a few seconds. Last year, she had a grand mal seizure. And then again 3 weeks ago. When I mentioned the "black out" to my daughters doctor, they acted like it was irrelevant, but I really felt like it meant something. All her tests are coming up negative and we can't figure out why she is having them. She just started Keppra today, after reading everyone's posts, I'm very nervous.

Thanks for sharing, your post was most helpful to me.

Sandy - posted on 04/27/2011

B 6 is a vitamin that is sometimes recommended. If he's already having trouble with Keppra ... switch to another drug!! From my years of experience ... it doesn't get better, just worse. You need a friendly drug like Trileptal, maybe Vimpat, Vigabatrin. So many out there to try. Do not let the dr. talk you into keeping him on Keppra!! It can be a very evil drug!! Good luck.
Sandy Lora

Amber - posted on 04/27/2011

I have a 8 yr old son who just started keppra I am a scarded mom this is so new to us he is taking depokate as well I a couple of days it has been hell...he is no actting right behavior has change already .. what is b6 ?? and what can i do ....help plz

Amber - posted on 04/27/2011

hi my name is amber and my son just started this med a wk ago and he is already actting out ..help what did u do

Trudy - posted on 03/20/2011

Hi, I am a mum of 3 who is an epileptic since i was 11 and now i am 38 yrs old. I am on Keppra as well. But 1st when i was at school my grades was great till i was put on meds for my seizures. So all through high school and tafe i did really bad at schooling. My grades were terrible and i keep forgeting things and i could not study.

I have been on keppra since the start of last year and i am on a dose of 1750 mg a day. I also think the same as your daughter dying and it drives me crazy not my children dying me dying. I either think i have cancer or i will get hit by a car anything.I hope this helps.

Jennifer - posted on 03/16/2011

my 12 yr old son takes keppra, 500mg in the am and 500mg at night. hes been getting headaches once or twice a week. he also has some of the same symptoms as your daughter.i'm trying to get a hold of the neuro to get some testing done

Julie - posted on 03/15/2011

I guess I would want everyone who replied to this post to do these things:
1. Talk to and ask questions of your children and more importantly listen to what your children are telling you (or what they aren't telling you /nonverbal language) about how they feel about school, friends, having seizures, their doctors, meds, etc. . Behavior can be reactive to what has been experienced recently (acting out, being bullied, angry, frustrated, etc. - can't handle the stress of keeping quiet anymore, conforming to fitting in, not worrying others, not having a "bad" seizure, etc.). They may even be bored in school, many people with seizure disorders are gifted/talented learners but may be diagnosed ADD/ADHD (similiar qualities, as does Aspbergers, there is a link with autism and epilepsy) due to lack of focus (twice exceptional/thrice exceptionality) or other learning differences, but may never get tested if they do well enough in school due to no academic impact. Look at the list of famous people with epilepsy. Your children may be very intelligent, creative, and misunderstaood by everyone around them and they know it. Can you imagine living in an environment like that where people think they know you or know what's best for you but make it worse and you don't speak up because they are the adults you depend on?
2. Research thyroid disorders, which have a neuro, heart, hormonal, metabolic, GI, mood/emotion, sleep, appetite, skin and hair component. They can result in seizures or numbness/tingling (diabetes, neuropathy) symptoms and seizure meds, if taken long amounts of time may result in thyroid disorders.
3. Read the side effects and warnings of your meds and
compare them to the symptoms of hypo and hyperthyroidism. Hypo/Hyperthyroidism is underdiagnosed also. Sometimes you can go between hypo and hyper and then be in a remission and be euthyroid. TSH levels don't tell the whole story.

Yes, every individual is different, meds are going to affect each person differently, growth spurts are going to affect how the drugs work also with the hormone and metabolic rates, but I would stress getting a whole picture of what is going on, not just focusing on the meds would be the best interest of the family.
Know your family health history - diabetes, autoimmune disorders, thyroid conditions/cancer, heart disease, etc. and teach your child to advocate by example. If the drs. don't listen or dismiss your ideas get a new one. Drs. are human, they make mistakes. If you have the documentation from them get a 504 from the school, but go with an advocate to the IEP meeting. You can read about IEPs, 504s, HIPPA , FERPA, and IDEA at the US Dept of Education website. www.fda.gov, www.cdc.gov would be good sources for you to use for the other information you need on meds and medical conditions, medical articles/studies, etc. . www.hhs.gov has good resources also. Good luck.

Roberta - posted on 03/13/2011

My son was on same dose and same effects.we are decreasing dose and can see a change. Ask her Dr about Vimpat God sent drug. Good luck.

Sandy - posted on 03/10/2011

Kayla ... all seizure drugs slow down the digestive system. I give my son a cod liver oil capsule every morning. I switch up once in awhile with flax seed oil capsules with helps them go when constipated and makes them stop when they have diarrhea. Double use which is great. With your sons age, you could get flax seeds or ground flax seeds and sprinkle some on his food. I've witnessed what it does ... or I would not tell anyone else to do it. I have been dealing with my son and his constipation issues since 1999 so I do profess to know what I am talking about. I've lived it!!! Good luck!
Sandy Lora

Kayla - posted on 03/10/2011

My son is 19 months old an is on Keppra. He has had normal EEGs and a normal brain scan. But before he was put on Keppra, he was having two types of seizures. One was febrile and they cant figure out the 2nd type. My son also has celiac disease, which is where he cant eat wheat or gluten. He also is lactose and tolerent. Same with me. But i noticed while he is on the Keppra it does make him a little more grumpy and irriatated. It also makes him very constipated. Before he was diagnosed with Celiac he was very constipated. He was on an adult dose of miralax. that was the only way he was able to go to the bathroom. But now that he is on Keppra, we are back to hard stools and very constipated. I thought we fixed his constipation problem by taking him off wheat and gluten. He was fine until we started him on Keppra. So i know for a fact that it is the meds causing him to be very constipated. He is on .75 ml twice a day.

Here is a website all about Keppra

http://www.keppraxr.com/

hope this helps. Hope your daughter is getting better

Kelli - posted on 03/09/2011

Dawn,
When she would have a "black out" she would never actually passes out but would complain that she couldn't hear or see during these times. It has never been discovered exactly how long they last as they are hard to notice. The one thing we did figure out is that the more ideal she is the more likely she was to have an episode. The Dr. says she has local and generalized seizures. My son takes Focalin for his ADHD and I never thought about asking that question. I will definitely talk to the Dr. about that tomorrow.

Michelle - posted on 03/09/2011

Keppra has been a good drug for us. My daughter might get a little moody when she starts or increases her medicine, but it goes away. The medicine that caused the most problems for us was lamictal. My daughter was a bear on lamictal. Of course, everyone associates bad moods with Keppra. You never hear anyone say much about lamictal and moods. Every one is different, so different mediciations work better or worse for different people.

Michelle - posted on 03/09/2011

My daughter is on Keppra as well. Of course, she has been on Zoloft for anxiety since before the seizure meds. Anyway, I notice that after each increase my daughter gets moody. It is usually a few days after an increase. The nurse at the neurologists office said that that was normal and to tell her to work through her moods when she has her increases. I feel like the Zoloft helps a lot. I had started b6 but since my daughter takes Zoloft I quit because she was having stomach aches. It is very hard for them when they are increasing or starting keppra. Keppra rage can occur and it is something that they have no control over. The teachers need to know this. She could also be having anxiety due to her seizures. I would look into this. I know that kids are cruel and many are picking on my daughter as well. It is so hard but we just have to help them the best we can. I would think of trying b6. It really helps a lot of people who take keppra. It helps their moods. good luck to you. Let me know what you find out.

Anne-margaret - posted on 03/09/2011

Hi Kelly my daughter is on Keppraxr 1000 MG She has been on it since she was 13. She went from 500 to now 100 since she has been in High School. She is taking it with vitamin b50 mg. And topomax. Speak to her neuro or get a second opinion.

Jeanette - posted on 03/09/2011

Hi Kelli
The School should not commit on things they don't know about! My daughter is totally disabled and has been on Keppra for some time now at least 2 years my daughter is 8 and she can't talk so I have to guess what goes on with her after i administer her medication,keppra has giving my daughter screamming fits and headaches after she has her dose. She gets exstream headachs from this medication. I have to give her tylenol when this happens. Just last night after I gave her her keppra about an hour later she was in pain and cried and screamed for hours,she did not settle down until after I gve her tylenol, I have found that it works for her. Her keppra has stop working because she started having more grandmall seizures than the myclonic tonic ones she had since birth. After complaining to her NURO he has now put her on dilantin along with her keppra. Although my daughters medical differances are way diffrent from yours, the medication at times is problemmatic for the user. I don't know where your from but im taking my daughter to an epilepsy Clinic in Rochester at the end of this month for a second opinion and to see if there is other options out there to help control her seizures.It is the strong Epilepsy Center 919-Westfall Road building C,Suite 220 Rochester N.Y. 14618.Their phone nubers 585-341-7420 Fax is 585-756-2311. Im not sure if you will need a refferal from your daughters doctor or not. However my daughters doctor did give me one. If your daughters doctor won't give you a refferel seek second opinions and change doctors if you have to. Fight the school for your daughters rights. When I want to know I usally google side affect or you can get it from my pharmasist that come with the medication when you get the script filled and im here to tell you that your daughters changes are because of the medication and its scary to whach your sweet child change because of medication she has to take. I find that when you involve the school in your childs medical conditions they tend to put lables on them. I would suggest to keep them out of the picture as much as possible and seek outside help from professionals who actully know what this medication side affects can do.

Sandy - posted on 03/09/2011

Kelli ... please get her off Keppra!! That drug causes kids to become irritable, and plain out of control. Zonagran also causes that and lots of violence. My son has been on most seizure drugs so I do have personal experience with most things dealing with seizures since 1999. As Bridget Cope, my son is on Trileptal since 2000, with Vimpat being added in 2010. Joey is also on 36 mg of Concerta in the morning, after he was having lots of trouble paying attention in school. His grades and behavior have improved wonderfully. I experiment with his drugs to see what is best for HIM. In case you haven't read my other posts ... 8 months ago I started him on Lecithin capsules, 4 times a week at night. Lecithin is for brain function!!! Joey has been seizure free for over 6 months since starting the Lecithin!!! Seizure drugs have never made him seizure free since 1999!!! Try it!! Your daughter has nothing to lose except for seizures!! No guts no glory!! Try anything and everything to help your daughter, including arguing with doctors about what you want and to also stay strong and positive. God Bless and I hope you try the Lecithin and also get her off the Keppra.
Sandy Lora

Bridget - posted on 03/09/2011

My son was put on Keppra in the 5th grade when he was diagnosed with Epilepsy. It turned him into a monster. He suffered severe mood swings, anxiety, and depression. He also began cutting himself. call your Neuro and demand a different medication. My son takes Trileptal, despite the inattentiveness it causes, it has made a remarkable difference in his treatment. Keppra should be taken off of he market. If your Neuro refuses to change the meds, it is within your right to change doctors. It took my son until now, his 8th grade year, to change the opinion of the kids and most of the teachers about him. But he is now working to bring his grades to where his abilities are and made the honor roll for the first time since 4th grade. Never give up, always remember you know your children better than any health professional does. If something doesn't seem right to you, it's not. I hope this was helpful, and good luck.

Bettina - posted on 03/09/2011

Hi. You are going through a lot. Don't take the school's uninformed comments to heart. I have not looked greatly into the side effects of Keppra, but I will look for some information for you.
We have had some difficultly with keppra. Our daughter reacted oddly to one generic brand, but did well on another brand. You may want to check with your pharmacist about that. My daughter, age 19, a senior for a 2nd year, takes 1500 mg daily. She is at the max for her weight. She was having headaches and seeing halos. Her neuro also feels that the Keppra is not the issue, but did a new MRI and new EEG. The MRI was normal, but the EEG wasn't just right. She is going to have an ambulatory EEG in April. She was diagnosed with Generalized Tonic clonic seizures one year ago by her new neurologist. She had been have these seizures for 15 months without any answers. They started suddenly. She also has anxiety issues - she worried (worries?) that she will have another seizure. She worries about failing again. My daughter also has difficulty concentrating. She is taking Vyvance for that. The keppra may aggravate the situation, but I think that the seizures themselves cause attention difficulties (no medical documentation) and I know that anxiety will cause a lack of attention and focus and the ability to work well. We take our daughter to a counselor and that has helped. We went to this counselor at the suggestion of our family doctor for ADD/ADHD testing. The counselor is well versed in this type of situation. I believe that she is a lay counselor and works within a licensed counseling center.
We changed neurologists and started going to a child neurologist. We have to travel 55 miles one way to see the doctor, but it is so worth the effort. I would suggest getting a 2nd opinion and going to a child neurologist, if you aren't already. One other thing, seizures can be linked to hormone changes. Most of my daughter's seizures happened near a cycle. Your daughter is young, so she may not have started, but it could still be playing a role. Hormones also affect headaches. I don't know where you are located, but we are located in the Atlanta, GA area. I know that this is long without any concrete answers for you, but I want to tell you to trust your instincts. You are the mom and YOU know your daughter the best. Hang in there! Bettina (You may respond to me directly at bettinamorton@gmail.com.)

Karen - posted on 03/09/2011

Our son takes Keppra. We have noticed him to be extremely anxious and can have freak out for no reason at all. We have also noticed alot of irriability which could also be from the Keppra. However, both emotions are from the same part of the brain where all the seizure activity is taking place, so we aren't sure what is the medication and what is the "sensitivity" or "auras" before seizures take place. We are in the process of getting a second opinion to understand what is medication versus behavior versus seizure to figure out best how to help him.

Michelle - posted on 03/09/2011

Hi Kelli. My daughter was 5 1/2 when put on Keppra. It was built up very slowly and I didn't notice any side effects although the MD did tell me one of the biggest side effects was behavioral issues. She went almost a full year with out seizures and then started having them again.

She had to have a long term study done where they took her off her meds and monitored her seizures. After she had 2 in a row they said they had enough meds and put her back on Keppra.... her full dose. She had been off it for only 2 days.

SHE WAS A MONSTER. And I don't mean that in a mean way. But she was not acting like my little girl at all. She was hitting me, throwing things, calling me names, she threatened to hurt me. They lowered the keppra and after 2 days it sorted out. I have never seen her like that in my life! It scared the day lights out of me. She is now on Lamictol and Keppra. And in 3 months we are going to see if we should wean her off the keppra.

Does your pharmacy give you a print out of the meds when you get a script filled? I would take it to the nurse at the school and show her it. It should have all the information about the medication including side effects.

Also... does your school have 504 plans? This would be a meeting where she would get certain things done to ensure that even with her medical situation she gets the same rights as other kids. For instance my daughter can have extra time on tests and home work should she need them due to seizure activity, missed school due to appts ect... might be worth checking about.

Rachel - posted on 03/09/2011

It could be the seizures that are causing the behaviour and anxiety, however my son has had behaviour problems since starting meds in general and Keppra has caused more issues until he adjusts to any inc in dosage....ensuring a balanced diet (avoid sugar), sleep pattern and exercise helps, but I'm considering a new drug for the same reasons as you....B6 really helps too...sounds like your school are as unsupportive as ours!!!

Dawn - posted on 03/09/2011

Hi Kelli- my 13 year daughter was born with epilepsy but not diagnosed until she was 6 years old. She was put on Keppra, after many other drugs had side effects on her. Keppra worked wonders for her, but we had also noticed the failing grades(even though she was already behind and getting help from the school). After talking with her neuro, he decided that Focalin was the key to helping her focus. And it works very well. I was told that a lot of kids with epilepsy, who are on meds, also need a ADD medication to go along with it, to help the focus part. Focalin is not a stimulate, so it doesn't have side effects like other ADD drugs. My daughter did not have the black outs- but when she would seizure, they were generalized, so she would look fine, but in fact was starring straight past whatever was in front of her. She couldn't hear nor see anything until the seizure was over. I wonder if your daughter is saying "Black out", and she's having a seizure?? Does she actually pass out?
I don't know if this will help, but I thought I would put it out there for you. good luck.

Dawn - posted on 03/09/2011

Hi Kelli- my 13 year daughter was born with epilepsy but not diagnosed until she was 6 years old. She was put on Keppra, after many other drugs had side effects on her. Keppra worked wonders for her, but we had also noticed the failing grades(even though she was already behind and getting help from the school). After talking with her neuro, he decided that Focalin was the key to helping her focus. And it works very well. I was told that a lot of kids with epilepsy, who are on meds, also need a ADD medication to go along with it, to help the focus part. Focalin is not a stimulate, so it doesn't have side effects like other ADD drugs. My daughter did not have the black outs- but when she would seizure, they were generalized, so she would look fine, but in fact was starring straight past whatever was in front of her. She couldn't hear nor see anything until the seizure was over. I wonder if your daughter is saying "Black out", and she's having a seizure?? Does she actually pass out?
I don't know if this will help, but I thought I would put it out there for you. good luck.

Danie Nobel - posted on 03/08/2011

Hi everyone, I have a son whois currently 6 and has been on Keppra for about a year to prevent convulsions caused by a previous operation (not epilepsy...but the same end result). He is on about 1000 ml a day and does fabulously in school but does manifest occasionally fears/worries that seem exaggerated. I try to be as honest as possible with him and explain every step of the process and of course try to SHOW him that those fears are unsubstansiated in any and every way possible. So far, so good. Good luck to you.

Angela - posted on 03/07/2011

Hi Kelli, I just read you are going to try topomax. My daughter is on this and it has stopped her from being able to sweat or regulate her body temperature. I actually found out from another Mum on here that it was the topomax causing it when I posted a question about seizures and heat. I didn't know this drug could cause this. We manage it by using cold neck ties and ice vests that we have specifically made for Eloise. Good luck with the change over xo

Stephanie - posted on 03/07/2011

My son is 5 and has Epilepsy. He took Keppra, and while he didn't have side effects, it made his seizures worse. He has now been on Topamax and Depakote for a few years and has had few seizures. Topamax does decrease his appetite. He just started school and has attention issues, along with some minor developmental delays. I was told that it could be the medication or just the fact that he has Epilepsy but there's not way to know for sure. The one thing I would tell you, is NOT to let the school decide what your child's problem is. I'm an educator and there are laws that they have to follow. Your child should be treated fairly and if she has a service plan, they have to provide services for her. Know your rights and use them. Good luck.

Kelli - posted on 03/07/2011

Ladies I thank you so very much for your input. I did finally talk to the Dr. last week he feels 100% that this is all being caused by the meds and we are currently weening her of the Keppra and going to try Topomax. I hope we have better luck on this one.

Michele - posted on 03/04/2011

Hi! My son is on Keppra at a very high dose. He is 6 and takes 550ml twice a day for a total of 1100 per day. We are very fortunate that he does not experience the side effects common to many of the anti-seizure drugs. One very common side effect of Keppra is increased aggitation, which is often controlled by simply adding B-6. Another known side effect of many anti-seizure drugs is increased fear, suicidal thoughts, restlessness and so on. I have not heard of Keppra causing headaches, but every person reacts differently to med.'s. Because your daughter seems to have such high anxiety, I wonder if the headaches might be a side effect of that? You are definately correct in discussing all of this with your daughter's neuro. I would not wait. Continue to reach out to him/her until your call is returned. You should not have to wait! Finally, I ask if your daughter's behavior is an all-day occurrance, or if it happens at certain times of the day. The reason I ask is, my son suffers from obstructive sleep apnea. (He is scheduled for a tonsil/adenoidectomy in a week to hopefully correct this problem.) Anyway, becasue of his apnea, he has been getting very poor sleep for the last few weeks. And since his apnea became so bad, he also has been doing poorly in school, fidgity, and unpredictable. This all seems to happen in the afternoons when his lack of sleep catches up with him. Just a thought, but you should monitor her sleep to make sure she is getting a real rest when she goes to bed. With all that said, I cannot stress enough (again!) how important it is for you to be able to discuss it with your daughter's neuro. I wish you the best of luck. Stay strong.

Angela - posted on 03/04/2011

Hi Kellie, my daughter is 5 & 1/2 and has tried many drugs to control seizures. Keppra was the nastiest drug we have been on. She became pure evil and was hurting her brother and just the most naughty child ever. she was disruptive, non-compliant and just plain evil! After my experience with keppra I would bet my house that your daughters problems are from the keppra. These anticonvulsants may help in stopping seizures but they come with some horrid side effects. If you look through past posts by people over the last year you will find many that have had serious behaviour problems with keppra. It is either a fantastic drug or a horrible one, depending on the child. For us it was horrible. Maybe ask your doctor to change her to another drug. Good luck with everything. Ange xo

Lisa - posted on 03/03/2011

Hi Kelli, I have a 13 yr old daughter that's been on Keppra for almost 6 months now and it has stopped her seizures completely without any side effects (especially taking meds with B-Complex vitamin during day & B6 at night). She did have a normal MRI but abnormal EEG diagnosing the seizures/epilepsy. You said your daughter had a abnormal MRI? What are the blackouts caused by? a tumor or something on the brain?? I've never heard of Keppra causing that many problems. But I understand each med works differently in every person. I would try and get to the bottom of why the blackouts were happening...