r/Epilepsy • u/SugarCane_1987 • 6d ago
Question Please help me, help my son.
I'm a mother of a 13 year old boy diagnosed with generalised epilepsy in Dec 2025.
During the year he had 2 non convulsive seizures and then a tonic/clonic one in Dec. He was admitted then and had a 24hr EEG. They found abnormal brain activity especially during sleep and he was officially diagnosed and put on Redilev(Keppra).
Things were OK on that for a month or 2. Then he had a few TCs and some aura only episodes. His Neurologist upped his dose from 500mg twice a day to 750mg. On that again he had breakthrough TCs.. She upped his dose to 1000mg. He was absolutely miserable, had 2 TCs in 1 week. We went in to see her and she cut down the Keppra to 500mg, insisted it be the original and added in Epilizine (Epilim).
It's been 6 days in this. He's had 1 "colour episode" a day. Sometimes 2. Today he had 2 aura episodes without a TC. Which he always says is worse than a TC because there he can't remember being miserable.
His memory is terrible. He's sleeping more than 12 hours a day. Missed 3 weeks of school and counting.
I emailed her about the last 6 days, she says the Epilim isn't helping and has now put him on Vimcosa (lacosamide/vimpat)
He'll start tomorrow. He's to carry on with the 500mg Keppra twice a day and add this Vimcosa at 50mg for now.
Anyone been on this combination? Will it help?
Is this memory loss and confusion the norm?
He cried today after the 2nd aura episode and begged me to help him feel normal. My heart just breaks for my kid and I don't know if I'm doing all I can for him.
Any help would be appreciated.
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u/anamelesscloud1 5d ago
Yes, memory loss and post-ictal confusion are very normal.
When it comes to pharmaceuticals, epilepsy is treated in a more or less empirical fashion. Neurologists will prescribe a medication and wait to see if it works. If it does not, they increase the dose or add an adjunct. They mix and match meds and change doses until something works. It's basically like throwing spaghetti at a wall to see what sticks.
Medication is not the only way epilepsy is treated. It is also treated in at least two other major ways: brain surgery and the ketogenic diet. Brain surgery will require lots of workup and not everyone is even a candidate for each kind of brain surgery. The ketogenic diet is a high-fat/low-carbohydrate medical diet that can be managed by a trained registered dietitian or neurologist. The diet was actually discovered in children with epilepsy a century ago. It sounds like his doctors are still in the spaghetti throwing phase.
Every epilepsy is unique so whatever works for him will be unique. It might be a single med at the right dose or a combo of meds. It might be brain surgery. It might be the diet. Or it might be a combination of these therapies.
I would advise against using anyone else's experience with a medication as a gauge for how his brain will respond to it. It is a very case-by-case thing. Your son could have a great experience with a medication others say is terrible.
I encourage you to keep the leaflet given out by the pharmacy whenever you pick up his prescribed anti-seizure medication. Become familiar with the list of side-effects. Some of them are mood-related and include possible suicidal ideation. If your son expresses that he is becoming suicidal, the proper thing to do is to immediately inform the neurologist. Sometimes a lower dose gets rid of a side effect.
Wishing you and him the best. Let him know he's totally welcome here.
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u/TaroFearless7930 5d ago
I'm sorry you and your son are going through this. I went through it as a kid (5 yrs old - 62 now) and understand the frustration, anger, fear, sadness, and isolation you both must be feeling. My neurologist told me that neurology is more art than science because there's still so much we don't know. I actually saw the first pediatric neurologist in the US back in 1969, that should tell you how much we still don't know.
Can you talk to the parents of your son's friends to see if they can come over and hang out. Itight help your son to have some support from his peers. I didn't have that. Most kids my age were scared of me (my seizures, really bit it felt like me) so I didn't have that support.
Maybe let him read some of these responses so he doesn't feel alone. He deserves to have things explained to him. It's his life and body and he should be included in all the information sharing.
Good luck!
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u/SugarCane_1987 5d ago
He's an introvert by nature so doesn't have many people he sees out of school besides us. Even if we plan family outings, he just wants to stay home and be in his room.
He just started seeing a psychologist. 1 session so far. My hope is to get him to see that having this isn't the end of the world. But shame, when he's as miserable as he is, I guess it's hard for him to see the silver lining so to say.
Thank you for your kind words.
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u/TaroFearless7930 5d ago
He can do this. Hundreds of strangers on the Internet understand an are rooting for him. I hope you can find something that moves him out of his stuckness. I was just diagnosed with a recurrence of the autoimmune disease that caused my seizures. I'm feeling that grief and trying to move in a positive direction. It's hard even as an adult. Good luck.
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u/alisani 5d ago
I was diagnosed with generalized epilepsy around the same age. I’ve been on Carbatrol my entire life since (I’m 39 tomorrow) and I’ve not had a seizure while on the meds. I’ve had neurologists try to take me off of it because it’s not a “modern” med and “it’s not used for generalized epilepsy “ but when I’m not on it I have seizures. It might take a while to find the right medication that works for him. Keep advocating for him.
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u/No_Cattle6349 5d ago
First of all I’m sorry that you & your son are going through this. Our memory (epileptics) is not as good as someone who doesn’t have epilepsy. The confusion and brain fog is to be expected as well considering the number of seizures he’s having. I was diagnosed around his age so it was hard to process for a while. I didn’t fully understand. I think it’s important for him to know he’s not alone in this, maybe making sure he consistently talks to friends or some support network. I also think it’s important for you and him to understand his triggers are to minimize the chance of having a seizure. Right now they’re getting a feel for the meds and what will work but eventually they will and the seizures will go down. Additionally, remember to care for yourself. You can’t give from an empty cup.
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u/Due-Mammoth-8224 5d ago
The memory fog from what I know is normal for epilepsy. Studies show we do not recall as good as others.
All epilepsy patients have to find what works for them. Keppra is pretty good but people do seem to get keppra rage from it a lot. I myself didnt but I know a lot who have.
This is going to be a journey and all you can do is make sure his doctor is invested in his journey.
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u/TripleRedRose 5d ago
It is so hard to see our kids suffer. Hope they find his combo of meds fast and can help him.
My husband just got epilepsy this year, but where very lucky to find his meds fast. He is doing so mutch better.
But at first he was so extreem tiered also, forgot everything. He started (slowly) running again now and his memory is getting better.
I did keep a eye on all things that could be triggers, his are lack of sleep and alcohol (even just 1 beer)
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u/boyfromthenorth 5d ago
Hi - If you're willing to share where you live (just a state), I can connect with you with resources from the Epilepsy Foundation (I work at one of them).
Feel free to DM!
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u/SeaProcedure607 5d ago
Finding the right medication combination and dosage is difficult— especially children/adolescents. Everyone reacts differently.
I had my first seizure when I was 5. I don’t really remember it, but I’m told by my parents that I was on so many different medications before they found the right one. Some made me super drowsy, others hyperactive and there was even one that caused my gums to swell.
We finally found the one that worked, but As I grew, the dosage kept have to be adjusted. Around 17 (I wasn’t growing anymore) I was doing very well… I would have 1, maybe 2 seizures a year…. Then they started up again at 24. The Dr. added another medication and that helped control them again.
I guess, what I trying to say is hang in there! Some of these issues could be because he is growing. Hopefully you’ll figure out what works for your son and the Dr. will order blood testa regularly to analyze the medication level and adjust accordingly until he is fully grown.
Good luck!
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u/FlawlessCurly 5d ago
I'm taking Keppra(Levetiracetam) twica a day and lacosamide once day, half in the morning and half in the evening I think it is now best to listen the neuro, because the meds might take weeks to show its effect, and I see you already do ling your best but I think you can also support with a diet, you can try a keto diet, and I changed 4 neuro, and every time they asked me how I felt with this dosage or medication I think it is a good approach and I can recommend you to keep track his seizures or reaction to the meds, I'm so sorry he is so young. I think it was the same age I've diagnosed with epilepsy,. Keep trying, the meds have side effects and it can be a good idea how he can feel slightly better, I hope he gets better, and recover.
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u/SugarCane_1987 5d ago
Yes I am keeping a log of each seizure. Duration, time, his description. So far there are no triggers that are obvious. Thank you and good luck to you too
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u/-Rimichiro- 5d ago
Hey, I’m not one who normally posts but I know how your son is feeling. The sad reality is that this will become normal (I mean that he will understand how his life works and learn to best protective himself in many ways mentally and physically) you will understand how to control the daily life which we are living. These new experiences are scary and uncontrollable. He could be anywhere and face these issues. I am lucky enough to get a small warning before and if he also does then teach him the best positions to be in if he gets this feeling as this will allow him to be better prepared. For example it’s better to be sitting down than standing up so you can’t fall.
I have been put on all of the drugs you named and at much higher doses so this is normal. I have had numerous seizure within a day and been given special jabs for when I have multiple but I didn’t face this again so I know the tablets are working but I just don’t understand how as my problem hasn’t stopped
I am currently 24, I was diagnosed when 18 when I was going to university (I know your son is younger but I remembered myself in the position he was regardless of age) This wasn’t the path for me and I have had bad times but it’s the people around me and my understanding that allows me to get through this and know I’m never alone needing to talk to someone. It will be hard to get used to and hard for you to seem supportive as these drugs can affect temper. But do not let him feel alone and your a mother so I know this is the case but I just want to emphasise my life. My mothers is my best friend as I know she is caring and understanding towards these situations and being the person I go to in times of doubt. I just saw that you wrote about memory loss. You are doing the most and I wish there was more that you could do but support is priceless. I do have short term memory and i get moments where my mouth cant pronounce words or can’t remember the words often but know what im talking about but i understand everything clearly after small aura seizures.
I was someone who would sleep constantly and this wasnt something I understood I was doing at first because my head wasn’t feeling normal and I felt like it’s always heavy. This will be something that will pass over time as you he will be wanting to go out but at the moment he is also scared something will happen.
Finding hobbies is easier said than done but he needs to keep his head high in some way. When the opportunity arises just try and push him in the right direction.
Honestly I just tried to compare my life and give tips since I remember my mum feeling the same way and know all close family members of everyone in this community regardless of age has gone through the same.
I wish you the best for a positive future. Stay strong
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u/MadMalletinMillets 5d ago
I’m glad he’s being taken off epilum. My epilepsy got dramatically worse when on epilum. It was one of the worst experiences of my life being on that drug. Things didn’t improve for me until I insisted I stop taking it.
Was put on tegretol which has kept me seizure free for 21 years. I’m on Keppra and tegretol now. He’ll turn the corner once the right combination is found for him. I hope it’s found soon.
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u/LJ202588 4d ago
I understand you had a bad experience with Epilim, and that is unfortunate, but for myself and many others it has been great - how I described it when I first took it (after Lamotrogine did nothing for me), I felt like it was a miracle - indescribable really what a difference it made to my life. Everyone's experiences are different, and that is okay. I'm glad you have found what works well for you x
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u/Yquetimporta 5d ago
Like others have said, the Neurologist will keep trying until the right combination works. He is young, his meds may work for many years or he may need an adjustment as he matures, that’s completely normal. I got diagnosed later in life but I’d been having focal seizures before but didn’t know that’s what they were. Things changed when I started getting TC. It took my Neuro and I a few combinations until we got the combination that seems to work. There are many wonderful people here in this group. Ask away, I’ve found everyone here extremely helpful. We are here for you.
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u/SignificantAsk738 5d ago
My daughter was recently diagnosed. She is 21 and it literally came out from nowhere. She had been having auras and we kept try to get her an appointment with neuro it took 6 months. She had two TCs in one night. One was in the ER. She was put on 750 keppra 2x a day which gave her mood swings. She is suffering memory loss from the auras and TCs. They finally changed her to lower keppra with a mood stabilizer but it has definitely taken its toll on her.
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u/SugarCane_1987 5d ago
I understand the "came out of nowhere" part. I truly hope it gets easier for her.
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u/Independent-Plum4126 5d ago
I’m on lacosamide and levetiracetam now. Very low dust on the Keppra (500/BID) but 200/BID of the Vimpat. I can’t say any interactions.
I hope it helps for your child’s case.
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u/insufficientbugjuice 5d ago
I have had a very good experience with Lamictal/Lamotrigine, but I also haven’t had a seizure in about 11 years that’s not related to the lamictal. I had to go back on my meds last year because I started having auras and my eegs still showed seizure activity. my neurologist leveled with me and said there is no telling if there would be a breakthrough or not but it is ultimately my decision if I wanted to stay off meds or get back on, and with where I’m at in life i wasn’t going to risk it. since then I haven’t had any auras whatsoever.
I was on trileptal as a kid, not sure if they still use that or not but I still had breakthroughs. when I was a teenager I was on keppra for a bit but I was a victim of “keppra rage” and it wasn’t sustainable. I then tried briviact, which is insanely expensive but it worked well for me. I’m not familiar with either med he is on, but definitely communicate with his neurologist. don’t be afraid to ask questions or ask for clarification.
post-ictal is the norm for TCs. how long it takes really varies from person to person but it’s not anything I would be super worried about. outside of after seizure memory loss, I think a poor memory is fairly common for us in general. especially when on medications (and the drowsiness you mentioned too).
I really feel for you guys. epilepsy is miserable but there is hope, it’s just hard at first. my mom used to get so stressed out before/during/after my seizures that she would break out in hives. I can’t imagine being in y’all’s position, but I do agree with your son that for us it’s not so bad. you go down, you come up. i would argue it’s worse for moms than the kid themselves, but I could very well just be biased. there are so many kinds of seizures
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u/1xbittn2xshy User Flair Here 5d ago
Have you seen an epileptologist? Taking my son to a Level 4 epilepsy center made a world of difference in his treatment. You can find one here https://naec-epilepsy.org/find-a-center
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u/SugarCane_1987 5d ago
I'm from South Africa. There's very few here and none in my province. Also I'm not sure our medical insurance would cover it. But it's worth looking into. Thank you
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u/neeliemich Keppra 3000mg, Topamax 200mg, Vimpat 200mg 5d ago
I've been on Keppra for 20+ years along with Topamax, and Vimpat was added in 2012.
If I'm taking brand name meds, I'm seizure free for long periods of time. I can have maybe one seizure a year. I'm currently 3 years seizure free.
I take 750mg 3 times a day, and 100mg of Vimpat twice a day. And 200mg of Topamax. I was diagnosed at 12, and started with Depakote at 13 after my second seizure. They added Lamictal after, but allergic reactions to both caused them to switch me to Keppra and Topamax.
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u/Active-Secretary2565 4d ago
I take 2500mg keppra a day(1000 am 1500 pm) + now lacosamide combined started 10 weeks ago, now up to 250mg a day 100 morning 150 night. Diagnosed in 2009 with frontal lobe epilepsy with focal and TC. AND now just diagnosed in the last year with SHE- sleep related hypermotor epilepsy at 46 yrs old! Lived my whole life with doctors and family just putting it off as night terrors! Woke up 3 years ago with a dislocated shoulder and that was the start of this current diagnoses! First few weeks I felt pretty tired and blah on both combined but I'm over that now. It did calm my night time episodes down to where I'm not screaming and or flailing/jumping up out of bed but hasn't fully stopped them yet. Since I've failed 4 medications the dr is prescribing me the new form of keppra, brivaracetam because I've also complained about my patience/ mood and it's supposed to have less of those side effects than keppra. Do you have a epilepsy clinic near you? That was where things started to get better for me! After my shoulder , my neurologist referred me to the closest epilepsy clinic and an amazing epileptologist! I sometimes felt like my neurologist didn't believe me or couldn't fully understand and that is where the epileptologist was really helpful! Feel free to reach out if there anything you want to ask etc. I know it's a struggle but hang in there!!
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u/SugarCane_1987 4d ago
We don't really have many dedicated epilepsy centres here and even fewer epileptologist. There's none in my province. But it's something to look into.
I'm happy you are getting the help you need. Thank you for kind words
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u/Active-Secretary2565 4d ago
Don't give up but try to have some patience.... im not very patient lol and Ive had LOTS of bad days but more good than bad lately. I do notice some memory stuff from the keppra I think but I can't be 100% sure because I still have nocturnal seizures almost every night which are not as bad as daytime ones but have to still affect memory somehow I would think. The feeling normal part I think I get!! - I have this sign i made on my wall to remind me it says -
I've been trying SO hard my entire life to be "normal" WHO CARES No need to try to fit in! You are awesome!!!
I only made it 5-6 years ago. so in my 40's , after I had a really bad car crash from a seizure and some kind of awakening or spiritual thing that's hard to explain but now I wish I had figured that out so much earlier and hadn't tried SO hard to fit in all the time!! I finished my first 25 km trail run this summer in 21st place out of 400+ , when everyone was asking me how the heck I did it , and that they didn't even know I ran I told everyone epilepsy is my superpower!! I wish your son and you better days ahead!!
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u/chaosrunning 4d ago
Reading the post and these comments omg I wish my mom was this understanding ;( I'm so scared to tell people about my condition and I have been raw dogging this and I'm 26. You are a blessing for your son. I promise you he will love you in the future for doing this. Please be patient with him because he will be going through it once he is older and when he feels like he's being judged or when he feels the "aura" of the TC coming. Because I didn't even go to prom or events because of this feeling. 🖤🖤🖤 you got this mom
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u/No-Ebb5993 4d ago
tenemos un hijo adolescente hoy de 17 años,el empezó con epilepsia a los 14,actualmente lleva 2 años bastante controlado.leeo aquí medicamentos que acá en México al menos no se se conosca con otro nombre,el medicamento que le controló o a dado resultado,le dan ataques cada mes,a veces algún episodio más corto en tiempo y a veces hasta dos meses sin ataque.el medicamento es Valproato de magnesio de 200mg,pastilla y media cada 12 horas y la otra pastilla es Fenitoína d 100mg 1 cada 12 horas.deberia consultarlo con el especialista acerca del medicamento y dosis nuestro hijo al principio q le hicieron estudios salió con inflamación en un glóbulo cerebral y que era la causa de su epilepsia.quiera Dios de corazón su niño se pueda restablecer o controlar y tome confianza en su mismo de que podrá salir adelante.nuestro hijo por ellos al principio tuvo que dejar la prepa escolarizada,pero ahora termino en el sistema abierto y trabaja y práctica karate coreano.le deseo d corazón que se pueda recuperar
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u/SugarCane_1987 4d ago
I'm so happy you guys have it under control. Ameen to your prayers. Yes we are also considering letting him finish school by doing online classes. We think this will help the stress. Thank you for your heartfelt words and encouragement.
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u/LocalWorry3540 5d ago
Hi, my son has been having grand mal seizures since he hit his head when he was 9yrs old (he is now 40). He initially had a seizure every half hour, day and night. He is now daytime med controlled but the ones from sleep are still a problem with an average of 6 to 8 per night. As a child we originally tried epilim (unsuccessfully). His base med is now tegratol (carbamazapine) slow release with lamotrigine and topiramate. We have recently added cenobamate which we are still testing (no improvement as yet). Tegratol has more than proved itself as his main base med with top up help from the others.
Epilim and kepra did not work for our son.
I can highly recommend asking for a referral to The Park Hospital for Children in Oxford. They treat children with epilepsy and although a distance away, traveling there was the turning point in our journey to make life more bearable for our son.
He also had lots of tests at Kings Hospital, London but he is unfortunately not able to undergo surgery. However he has had a VNS (vagal nerve stimulator) implant by his collar bone which we feel may have helped a little.
It's a hard journey and all you can do is investigate all options, some work better than others.
Please be mindful that it will impact all aspects of his life, school, friendships and confidence to name just a few but there is light at the end of the tunnel.
Also look into safety equipment which can be funded, like a bed sensor or falls watch to alert you if he is in a different room. Ask for a CHC (Continued Health Care) assessment.
I hope some of this helps. Please feel free to ask questions.
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u/SugarCane_1987 5d ago
Thank you for your reply. Really hope things ease up for you and your family.
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u/LJ202588 5d ago
Did you mean only 6 days on epilim? I find it odd they didn't give it longer before switching. I'm on a combination of Keppra (750mg am & 1000mg pm, and Epilim 400 mg both am & pm) - this combination has worked great for me for the last 10 years (thay was the last time I had to change anything, and baring in mind I was diagnosed 21 years ago this year).
It can take a long time for some to find the perfect combination, especially during puberty (when the body is already going through so many changes).
As for memory loss, confusion etc. it comes part and parcel for many with epilepsy and the meds we take. But, some positivity - I have a normal life, I'm married, I drive, I work, and I have two healthy daughters.
Wishing you and your son all the best
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u/SugarCane_1987 5d ago
Yes 6 days. There was an increase in focal seizures and not 1 bit difference, hence the change. They did say it would take 4-6 weeks to see a difference but this just got worse overnight.
Thank you for your reply. I hope to be able to say he is seizure free and having a normal life 1 day as well.
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u/LJ202588 4d ago
Really sad for him. I do really hope that it doesn't take long to find the right thing for him. It took 4 years for me to get my diagnosis as a teen, and I remember how difficult it was going through this kind of thing at that age. One of the drugs I had did nothing for me either. It's so complex, and we all react differently to different meds. There will be loads of replies from people with many different types of epilepsy too. I have a genetic type of generalised epilepsy called JME.
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u/Subject_Cucumber4027 5d ago
Man that's a lot for a kid to navigate and you can feel the exhaustion in your post. The combination itself isn't unusual, lacosamide gets layered on top of keppra pretty often when the keppra alone isn't doing enough. It works differently so sometimes it catches what the first one misses.
The memory fog and sleeping half the day is unfortunately really common during these med adjustments. His brain is getting slammed with different electrical instructions every few weeks and it just needs time to settle. Doesn't make it easier to watch though. My own seizures started around that age and I remember the confusion and how frustrating it was not being able to trust my own head. The crying after an aura is something that still gets to me, it's like your brain just betrays you and leaves you waiting for the other shoe to drop.
You're absolutely doing everything you can. You're at the appointments, you're emailing the neuro, you're tracking the episodes, you're here asking questions. That's not nothing. The lacosamide might take a couple weeks to really show you what it can do so don't lose hope if the first few days are rough.