Epilepsy Foundation

Anybody have experience with Keppra used on infants 4 months and above

Hi! Everyone, first of all Happy Easter to all of you who are celebrating it. :}
I have a 4 month old son, who started having seizures when he was 2 months, we have been using phenobarb- but it does not seem to helping, he is still have the seizures and they last longer, and has also developed myoclonic Jerks since he started phenobarb; our doc want to start him on Keppra but from what I have been reading it is recommended for kids aged 4 and above, I am wondering if anybody out there has tried it (keppra) on an infant and if so how did they find it.

Any information would be greatly appreciated. Thank you

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My daughter wasn't an infant when she started keppra(20mos) but i can tell you the only problem we saw was she got very emotional. Most of the meds she is/has been on is recommended for older children so I understand your worry. The keppra definetely helped with the jerks that trileptal caused. I hope you find others on this site that can give you more insight on the effects it has on infants.
Wow this sounds just like my daughter. She was 6 months when she began having seizures and then was seizure free when they put her on phenobarbital and then in january she had a breakthrough seizure and then again 2 months ago she had a seizure where she bit her tongue really bad. She is now 15 months and the dr is putting her on keppra. we r weening her off of phenobarb and introducing keppra slowly. The only downside to keppra is that it makes them very hyper the dr said. but he said you can give them an extra dose of b6 and it levels them out. Its been 2 days of my baby being on keppra and so far so good. The dr. said many dr's switch to keppra when phenobabrital stops working and they have pretty good outcomes,and a fellow pharmacist at my work told me that he has seen some kids become wobbly like they did on phenobarb. I hope I helped a lil bit to ease your mind. I know its scary switching medications, especially on infants.
I happened to stumble on to your topic, and thought I'd make one comment. I'm 27 and on Keppra, and Keppra does have a side effect called "Kepprage". Luckily, I haven't experienced this side effect, but many people have experienced it and have had to go off the drug. Kepprage is basically explained as your emotions getting out of control. You will get extremely mad over some very small and petty. So, if you notice your child getting very angry over something that they usually wouldn't be bothered by, you might want to take them off of the drug. Then again, if it controls their siezures and it's worth the emotional imbalance, maybe keep them on it.......just a thought. Good luck!
My daughter was started on keppra at 5 months old. We haven't really seen any side effects other than irritability for a few days after a dose increase.
Thanks guys for the information, I feel a little relieved to know that other infants have had some success with Keppra. Still nervous but i will pray about it.
my dd started phenob at 4 months and then they added keppra to her at about 6 mths, she was on that for about 4 months and she did not have any side effects.
HI Lillian,
Just a thought - go have a look at Idea-league.org & see if you ds may be similar to what they describe. If he is, it may alter you/your neuro's choice of meds. I wonder if your ds may fall into this category as his seizures have started so early, but also because you mention myoclonic jerks. Good luck ;)
My 7 month old has been on Keppra since about 1 month old. (in addition to phenobarb and trileptal). The Keppra helped slow them down but only for a few days. It really seemed to do the same thing as the phenobarb as far as contol, it changed his seizures but didn't stop them. But we kept him on it while adding trileptal anyway, since we couldn't really verify that it didn't work since we had 2 drugs in play already and also his side affects could be attributed to any of them. I can tell you that he is not an irritable baby at all, maybe in the very beginning but it doesn't seem to be having any "rage" affects with him.
I'd like to know how the Keppra is working out for you.
Melanie started having sz at 4 months and was put on phenobarb. She also developed head drops/myoclonic jerks a little later. She was put on Topamax (in addition), because the neuro and epi said that's a med that covers the myoclonic better. It worked great for us for almost 8 weeks, but we just added Keppra 2 days ago. She's been in the hospital for 4 days now because of some serious GTC's and high fever... and now rash that we're hoping is not a drug reaction. If she hadn't gotten this nasty virus that gave her these nasty fevers, we probably wouldn't be dealing with these sz right now, but since we are, the neruo says the Topamax isn't cutting it anymore. I'm sad about that, because we'd had such great control for so long-- although she had lost some "sparkle" with that med.

So, I'd like to know how the Keppra has worked out for you so far: I've been reading people's postings about their mood changes and rages, and wondering exactly how those side effects might present in an infant... well, I guess irratability, etc. But I also wanted to mention Topamax. It controlled her partials and myoclonics for quite a while... but now we've got these nasty GTC's...
MelaniesMom said:
I'd like to know how the Keppra is working out for you.
Melanie started having sz at 4 months and was put on phenobarb. She also developed head drops/myoclonic jerks a little later. She was put on Topamax (in addition), because the neuro and epi said that's a med that covers the myoclonic better. It worked great for us for almost 8 weeks, but we just added Keppra 2 days ago. She's been in the hospital for 4 days now because of some serious GTC's and high fever... and now rash that we're hoping is not a drug reaction. If she hadn't gotten this nasty virus that gave her these nasty fevers, we probably wouldn't be dealing with these sz right now, but since we are, the neruo says the Topamax isn't cutting it anymore. I'm sad about that, because we'd had such great control for so long-- although she had lost some "sparkle" with that med.

So, I'd like to know how the Keppra has worked out for you so far: I've been reading people's postings about their mood changes and rages, and wondering exactly how those side effects might present in an infant... well, I guess irratability, etc. But I also wanted to mention Topamax. It controlled her partials and myoclonics for quite a while... but now we've got these nasty GTC's...

Hi! my son has been on keppra for almost two weeks now, and within that time his dosage has been increased twice- I have noticed a great improvement in the myclonic Jerks (before Keppra he was having over 30 Jerks in a half an hour period, now are down to about 3 or 5 depending on the day) however, he is still getting seizures, they are not lasting as long as they were when he was on phenobarb, but he is getting smaller one and now they are coming in clusters (we have had one everyday for the past 3 days now)
Now to answer your question- I had the same question you asked and I was told by my neuro's office that there would be no side effects, well i noticed 2 days into taking keppra that my son would have these violent screams (not sure how else to explain, but the scream sounds aggressive in nature) he also has these sorrowful cries which come out of nowhere (it's the saddest cry ever) Now I noticed all of these started when we started with keppra- they could be normal childhood development but something tells me that they have more to do with the keppra than anything else.
I am wondering why your doc decided to add keppra if you guys were doing well on topamax? Is your daughter still on phenobarb? Well Mel's mom :} I hope you guys have GREAT luck with keppra, and I hope Mel will be home soon. By the way how old is she? I will ask my doc about topamax.....wonder if they carry it here in Canada. Please keep in touch my thoughts are with you and your family. Feel free to email me if you have anymore questions ttlkitcher@hotmail.com
Hi! My DDis 17 months and has been on Keppra since December. She was initially on Trileptal but this made her sz worse and she developed drop sz. We are now on Keppra and Lamictal as well as a full keto diet. I personally have never seen any anger or aggression issues with her, she is super mellow and sweet and the Keppra has not seemed to change her temperment at all. I hope your little guy will do well on it too. Hang in there!
Hi. My wife and I are new to this. Our daughter Ashlyn was perfectly healthy up until a little bit after being 4 months old. Out of nowhere my wife noticed that her eyes rolled up to one side and she was not responsive for about 15-30 seconds (although her vitals/breathing/etc. remained good). She would would then snap out of it and either stay awakefor a little bit or go right back to asleep. As I was writing this up last night she had a tonic/clonic seizure that lasted for about 1 minute.

This one was new to us and very scary seeing how she had only been doing the tonic since she started (eyes rolled to one side, unresponsive from anywhere to 5-45 seconds. We had taken her to the hospital last Thursday night (about a week and a half ago) and had stayed for 6 days. They ran an MRI, which was negative, and also a 72-hour EEG. The neurologist said after the EEG that although there was "seizure activity", none of it was very serious. He started her on Keppra this past Monday and discharged us Thursday of this week. Before yesterday, she had only had 1 clonic seizure (that we new about, although my wife and I would watch her like a hawk at the hospital forthe most part).

The doctor decided to only start her out on .5 ml of the Keppra and we were supposed to increase today (Sunday) to 1.0 ml. My wife and I were starting to have a little bit of faith up until yesterday afternoon when my wife thought that she noticed her doing "the eye thing" again. It was brief (I didn't see it), for what she said was like approximately 5-10 seconds. I told her we'd watch it to be sure, and sure enough about 5 hours later she had another one, with what looked to be like a little bit of a twitch. This one lasted about 30 seconds. After that she was fine, and as I was researching about Keppra last night (or this morning if you will), around 12:30 she had the tonic/clonic seizure to the likes of which we hadn't seen yet.

She opened her eyes out of a dead sleep and looked up towards the left. Her hands and leges began to shake (not really violently, but it was very noticable) and she continued to do this for about a minute. As the twitching slowed and then eventually stopped, she continued the eye gaze for about another 10 seconds before snapping out of it and going right back to sleep. My wife was very nervous and scared and wanted to rush her to the ER right away (I was reluctant, as I knew that she hadn't turned cyanotic, stopped breathing, or seemed to be in any pain). We took her over to her mother's house since the rescue department is much closer just in case, and we continued to monitor her for about 20 minutes.

My wife and I noticed her making all sorts of "crazy" looking faces while she was sleeping. Smiling at first, then frowning, then smiling again, then seeing her become very restless. We also noticed that her eyes looked like the were moving back and forth, up and down at warp speed behind her eyelids. It was very strange to watch and it made us nervous, as she tends to wake up with the tonic seizures when she gets all restless. We then decided to take her to the hospital (The Toldeo Hospital, as that is where we had went when she was admitted for the 6 days). While in the ER waiting room, she started to doing the "crazy facial movements" and the very rapid eye movement behind her eyelids while sleeping. I started to get nervous and I had a gut instinct that something was about to happen. I looked at my wife and said to her, "Babe, she is about to have one", and sure enough not even 10 seconds later she opened her eyes out of the blue (kind of like a being out of a horror movie) and got this look that was very freaky. She then proceeded to shake and stare for about a minute and a half to two minutes, and then let out kind of an exhausted cry, and proceeded to fall asleep again.

We stayed in the hospital for about 4 hours, had blood work done, and continued to monitor her vitals. The blood work came back negative, which was good, and they gave her 1.0 ml of Keppra at 4:00 am today and then told us to give her another dose at noon today. We were discharged and returned home, exhausted. We got about 3-4 hours of sleep and woke up at noon again today to give her her other dosage. About 2 hours after giving it to her, she had another smaller tonic/clonic seizure. It wasn't nearly as bad as the past two, and proceeded to last for only about 30 seconds. She snapped out of it, stared at my wife and I (looking all sad and perplexed at what had just happened) then fell right back to sleep. Since then, she has been in and out of sleep and hasn't had any other episodes (knock on wood).

So, there is our story. I am sure some of you are exhausted after reading that. Nobody seems to have any answers for us. Nobody seems to know what is causing it yet. Is anybody else experiencing something like this or have they experienced this at one point? It is starting to become very frustrating seeing this happen and still have no answers to what might be causing it. I know seizures most of the time are ideological and have no real explanation, but something is seriously going on here. This is very nerve wrecking and hard to watch and deal with. She was such a happy and playful baby and now all she does is sleep for 20 hours out of the day, and we get to sit and wait to see when her next seizure will be.

Are there any other medications that have worked for any of you other then Keppra? Should we give it more time, especially since we just upped the dosage to 1.0 ml today? How long does it usually take before it starts to control the seizures more often than not? She has been on it now for about 6 days (she was taking .5 ml before today). We give it to her at 8:00 am and then again at 8:00 pm. We are already noticing irritabilty (seriously, she used to be the most tolerable baby), as she gets very upset over little things like kissing her, holding her a way she doesn't like, etc.

We are hoping that over time the Keppra will start to work a whole lot better and give us a little piece of mind. Is there any other medication that helps to control the clonic or the tonic portion of the seizures better? Would taking 2 or 3 different meds help to control this better if in fact the Keppra doesn't help out in the long haul (which we hope it will start to work here soon)? Any thoughts or input on our situation would help out greatly, or at least until our neuro finds something out and tells us what might be going on or how we can fix it better. He already ruled out infantile spasms which gave us a piece of mind, and he told us that he was "optimistcally sure" that it isn't anything major to worry about. But still, we won't feel any better until we start seeing results and/or we get some answers. Any help from you guys and/or gals would make us feel a whole lot better.

Thank you in advance, and we will keep you posted and check back often to see if any of you have anything for us. I just ask that you pray for our little angel, Ashlyn, as we will pray for all of your son's/duaghter's as well. It is nice to talk to people in the same situation as us and get a little bit better of an understanding on what is or might be going on with our daughter. These are hard times, but in the end, I am optimistic (as is my wife) that out baby girl will be able to get these controlled and that she will be able to live a normal and happy life. Regardless, we will do whatever it takes in the meantime to guide her towards that path. One thing is for sure though and that is that we will never stop loving her nor will we look at her any different or love her any less. She is amazing and we are truly blessed to have such an angel!

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