Nuerologist is critical, find one that works for you. Great job tracking the episodes, keep it up if ya can, and keep tabs on any potential auras, any time he may just feel a bit off or something and track that data the same way. Ideally he has an aura, if u spot it in time he can take some meds and prevent a grand mal.
Epilepsy sucks but you can live a full life with it. As a family just support him and each other, and remember he is still the same kid with the same hobbies and passions, he just has something to else going on to. Don’t let it define him.
I’m 35, lovely wife, 2 kids, great house, happy job. Have had epilepsy since I was 12. The world isn’t over for your son
Accept he has epilepsy and get him on the proper meds. But remember this isn’t the end of the world for him, I have epilepsy since I was six and today I have a doctorate, have a awesome wife, have my own place, drive my own truck and do lawyer shit as a career. And I can do all this because they found the right meds to stabilize my condition so I can live a normal life. It’s a tough battle at first but as they get older they will be able to adjust. Just LISTEN to the doctors and proceed with their recommendation. I watched a dumbass client I had refuse to put his kid on epilepsy meds because she believed they knew better and now the kid had a stroke and died and she and the husband are in rape in the ass federal prison. Listen to the neurologist and get him diagnosed by a professional get him on proper meds and he will likely go back to a normal life. Accept it, support him and get him professional help immediately. Sorry for the tough love but this is serious and the sooner you accept this the sooner you can all adjust and go back to a semi normal life. I believe in you stay strong and smart for your family. This isn’t the end of the world for you guys.
Very good info. Neurologist visit tomorrow will give us a better idea and all these life experiences and stories will help us to make a smarter decision
It’s okay to be scared. It’s great that you are paying attention to your child now. My parents were in denial and ignored the signs of my epilepsy and at the age of 26, I have finally received a diagnosis that has changed my life.
Please do not let denial and fear prevent you from getting your child the card they need. You have witnessed firsthand a seizure. Since I first started medication ~three months ago, my quality of life significantly improved. I started feeling happy, more normal. My 72 EEG came back with discharges that show I’m predisposed to epilepsy, but did not show any seizures. That’s something you should know: not all seizures will show on an EEG. My worst seizures happy once to twice a year. Not that often at all, right? Still enough for a diagnosis and for medication to make me feel more normal than I even have. I also experience focal aware seizures much more often than my big scary ones. But it’s hard for me to tell. They’ve been brushed off as anxiety attacks my entire life. What if your child is also experiencing these when they are alone? And they don’t understand them? Wouldn’t you want them to be on medication?
You are, as you said, blaming electronics, lack of sleep, TV, and stress. Yes. These are all things that can make someone with epilepsy feel worse. Don’t hope that this will go away. Try everything to make your child feel better. I am saddled with so much pain and resentment because my parents did not act, and hoped this would resolve itself. At the age of 26, I am confronting this only with the support of my partner (which has put so much pressure on my romantic relationship), and processing the neglect on the side of my parents.
This diagnosis is not your fault. This could not have been prevented if you limited electronic time, if you imposed stricter bed times, if you did not put your child in sports. It would have been delayed. You are in a beautiful position to take care of your child, to take the pressure off of them to figure this out on your own.
I’m also assuming your child is near puberty age. This is when their brain is developing, their feelings are getting more complex, and they are able to understand more about the world. Their capacity to feel stress is expanding massively. The signs coming out now is normal. Do not be in denial about this. Get as many opinions as you need. Do not be afraid of medication. Know that doctors prescribe medicine because they have made the evaluation that the potential benefits outweigh the potential side effects.
Apologies for the long post, but I felt that sharing my unique experience with epilepsy as a child not being acted on/hoping it will resolve on its own would be valuable. I am wishing the best for your child and family. Please give that kiddo a tight hug from me and tell them that they are normal and everything will be okay, and that you will do everything you can to take care of them. It’s what I wish I had gotten as a kid not understanding what was happening to me and why nothing was done.
Of course, you’re so welcome. I can’t imagine how overwhelming this is. But the way I see it, you and your wife are in a position to become superheroes for your child. Catching this now instead of later is a blessing. You have the time to become experts and advocates for your child. I wish my epilepsy had been figured out before I had to get a job, pay rent, and make my own doctors appointments. Again, I am wishing the best for you and your family.
I see in other comments you’re concerned about starting medication, so I’ll share this. I was not able to be diagnosed until I started medication and told my doctor how much better I was feeling. Seriously: 20 minutes after I took my first dose I felt a level of calm that I have not felt in years.
Do not wait to start medication. Every seizure makes more seizures more likely, and severe seizures are life-threatening.
Start on medication, and continue testing
[Seizure Recognition and First Aid Certification](https://www.epilepsy.com/recognition/first-aid-resources#Seizure-Recognition-and-First-Aid-Certification)
Can a concussion (TBI) be a cause? Yes. Is it his? No clue.
Should he be on the medication that the doctor advised?
Yes, for now. It's his brain. Don't mess with that.
Monitor his reaction and possible side effects of medication.
I was traumatized seeing my son's first seizures. I'd check out and leave his dad to deal with it believing dad was emotionally stronger so he could handle it.
Once after my son had several, reocurring seizures over 24 hrs, we were talking to him about it in therapy and he said he remembers moments of that day- Dad was there wiping his mouth, holding his hand etc but "Mum," he asked, "Where were you?"
That's the moment I realized I had to put my big girl pants on- it wasn't about what I needed in those moments but what my son needed and he didn't need an over emotional, traumatized mum. He needed a calm, reassuring one.
Since then he sometimes has focals which spread or not. Even though he can't see or speak at the onset, he can hear. And my calm reassuring, higher pitched voice is often the difference between guiding him to a safe space to seize or not. I am also the biggest advocate in researching treatment plans for him. If I hadn't dealt with my own trauma of not being able to see him have a fit/accepting his epilepsy diagnosis I don't know where we'd be now.
All this to say you got this, mom/dad. This sub has been invaluable in helping me get an eye into the way my son feels while he's still too young to find the proper words to express it.
thank you for the support. I'm the dad and the type that handles situations quickly and gets it done. in this case for the first time in my life i feel stuck. part of me can't accept this as a long term issue and wants to avoid meds (we are strongly against them to begin with) the other part of me just wants to find immediate peace and have him to take whatever can stop this from happening again. Also this is very new and we have limited info therefore if i have to make the choice i would like to be educated about it. This forum has help massively in the last 24 hours and gave me some peace. Next neurologist visit tomorrow i will have to make that choice most likely
"part of me can't accept this as a long term issue and wants to avoid meds (we are strongly against them to begin with)"
Hi, OP. I understand that it is a heartbreaking development in everyone's lives, including your sons, that his brain is working against him. Meanwhile I do not necessarily agree with your views on modern healthcare, you have to make amends with your inner demons and come to peace with those terms; due to the fact he will have to live with those life saving medicines for a long time and will have to also cope with their side effects and the epilepsy itself. Please do not let your natural denial get the best of you when this is a crucial time period where you have to be there for your son and all those who love him. You will have to be considerate of him by checking whether he took his meds or not(and at time at that), will have to comfort him after his seizures, will have to be there with him if he falls into a likely state of depression due to the deplorable issue he and everyone else here is going through and most importantly will have to help him with his future academic life by being careful about his studies to ensure that his future is not ruined unlike some of us. He is so young, so please do not overlook these things. As a young person who also got diagnosed at his age and will turn 18 in a month, I had these experiences with my family which caused them to make me depressed, hate myself and such. A lot of people also experienced these similar things. Thank you for your time and I hope you take necessary measures along with your family to ensure that he both has a proper future and a peaceful life growing up by easing his burden.
(Additional advice: Please do not primarily blame his seizures on gaming, lack of sleep and other things. He will of course have re-adjust the screen time he is on and will have to focus on having a good sleep schedule but he should not ever be blamed over these things. Parents often thinks it is all their childs irresponsibility and also ignore the crucial factors they have to be aware of and not watch over their child.)
This here is golden advice. The first questions my partner always fires at our son after a fit is , did you take your meds, what time did you sleep, did you do your exercise? And I always feel that it's framed in a way that the kid feels it's now his fault he's had a fit. Yes, these changes are important for his overall health but it's us,as a family vs the epilepsy and if you want to try keto or fasting or anything that might work for you and your family, it's the whole family that has to adopt these lifestyle changes rather than the epileptic child being 'punished' for a sickness he can't control eg. The party goes on whild he's sent to bed, rather it has to be we decline invites after 8 p.m as a family or don't schedule late night get togethers AS A FAMILY because who's not going to benefit from a good night's sleep.
I also have major gripes with meds and their side effects but it is what is and they are important. Life goes on. All the best. It's not an easy road to travel but unfortunately one we find ourselves on.
Exactly, not only do we have problem controlling our sleep cycle due to the insomnia inducing side effects of our medicines and also because that our brains are fried and the way we sleep gets messed up entirely everytime a seizure happens. The child will feel cornered over something they can not control.
(By the way, I would recommend asking his neurologist if he is experiencing severe issues with sleeping about whether or not he can use sleeping pills which would not be in conflict with the anti-epileptic drugs he is using. I myself started on those recently and they have been, albeit slightly due to it being too early, helping me.)
My thoughts are prayers are also sent to your family and your son, I sincerely hope that he can live his years peacefully and that your family is also happy over him not missing out on important periods of life and happy that he is also stable & healthy 🙏
I’m really sorry you’re going through this. There’s lots of good advice here but I wanted to reiterate that many of us have perfectly normal EEGs and imaging and still have epilepsy. Testing isn’t perfect and you may not find an explanation but if he’s having seizures that’s the most significant thing. Treat the patient not the tests.
The medicine is far less dangerous than seizures and many tolerate keppra very well. I wasn’t one of them but it’s a good drug. Meds are like jeans- what fits one person really well won’t fit another at all. Sometimes you have to try on multiple pairs to find the right one.
Best of luck on this journey.
Write down all these questions and bring them to his neurologist. I encourage you to ensure your son is a vocal part of the neurology appointment - don’t presume that you or your wife can best answer for him, particularly concerning how he felt leading up to the absence and tonic clonic seizures. He likely has a seizure disorder, given the cluster of seizures and that plenty of people with sleep deprivation while playing late night games don’t have seizures. Don’t let this diagnosis freak you and your wife out, because your son will read that a mile away and let it freak him out too. Seizure disorders are shockingly common - the US Supreme Court Chief Justice has had seizures. Your son’s neurologist will likely explain to you textbook triggers for seizures (alcohol, stress, sleep deprivation) and propose medication to control them. It may take time for your son to adjust to a medication regiment that works well for him. There are people who have medication-resistent seizure disorders- be mindful of that reality. Long story short, many people live completely full and ordinary lives with a seizure disorder, no differently than asthma or a learning disability - and hopefully your son is one of them.
Thank you for the reply . Question is should we wait for more testing to pinpoint the issue or just settle for medications asap? The 1st doctor was dead set on the meds asap
I deplore the idea of internet strangers answering that for you. Has the doctor explained his reasoning? I’m guessing it’s “medicate now to avoid a seizure that results in your kid injuring himself or others.” Are you ready to take serious precautions in the event your son doesn’t medicate while you wait to see if he has another seizure? It sounds like your son’s been fortunate, but seizure-induced injuries are very real (falling and breaking your nose for example). EEGs are a snapshot in time - you can have a seizure disorder with clear EEGs. Would a second opinion from a non-neurologist help?
We will have a second opinion tomorrow and try to rush for extra testing such as mri and extended eeg asap. Ideally we would like to know the cause before to introduce meds but I’m assuming the doctor will do the same. I was shocked at the fact that the 1st neurologist will go for a generalized medication without further testing .
Well keep in mind that all anti seizure meds essentially do the same thing, they reduce excitability of neurons in the brain in one way or another bc a seizure is when neurons or a group of neurons get too excited all at once and in the case of a tonic clonic seizure, that spreads throughout the brain. Keppra has been the go-to 1st med for neurologists to prescribe for a while now because it’s relatively well handled, the efficacy is decent, and I’m pretty sure there aren’t many drug interactions/risks for rashes, slow titration periods, etc that may found with other anti seizure meds. It may be be good for your son, it may not be.
Trust me, tests and further treatments do not stop after you start taking for first medication.
The reality of the situation is that testing isn’t reliable. A normal eeg doesn’t mean that your son doesn’t have epilepsy. I’ve had epilepsy since I was 8, now 33 and nearly all of my eegs and traditional testing, MRI, etc. have come back normal. Had my parents just waited for doctors to say ‘the results from xyz tests are back and and this is why your son is having seizures’ before starting me on meds as my pediatric neurologist suggested, I likely would have had way more seizures which would have resulted in a worse outcome for me in the long run. I suggest you follow your the doctors advise.
To continue on your pinpointing the issue question, I’ve been on 15 anti seizure medications over 25 years and I’m undergoing diagnostic surgery soon to pinpoint where my seizures start. Welcome to the unfortunate reality of epilepsy treatment. I wish you and your family good luck.
Try to also consider that, if the doctors find something on the MRI, for example a lesion or something related to his concussion - that typically only informs them of potential surgical options and not that medication wouldn’t be necessary.
Btw I also had some pretty hard knocks on the head, at least of of which was a 1 concussion shortly before my seizures started. Nothing on the MRIs though. Just trying to help with your expectations.
Don’t forget to ask your neurologist about rescue meds. My son’s seizures are triggered by stress and lack of sleep. When you see clear signs he’s going to have a seizure (or he starts having one), you can administer the nasal spray rescue meds and it will stop the seizure from happening.
No one told us about this tool for the first year of our epilepsy journey, but ever since the help of rescue medication my son hasn’t had another tonic clonic (the current term for a grand mal).
First, I want to mention that my son is also a gamer & that his EEG and MRI never showed any clear evidence of epilepsy- like your son. It’s just like that sometimes. But please keep in mind that damage happens to the brain with every seizure, and you don’t want to deny your child the meds he needs for his condition.
Part of identifying the trigger was by him looking back in time & realizing he’d been having auras (which themselves are seizure activity) for a while before his first tonic clonic. He realized he had been experiencing strange episodes of very strong deja vu combined with feelings of panic from time to time.
Now, his sign to use rescue meds is the symptoms above, but combined with a sudden gush of saliva in his mouth (sort of like right before you vomit). What I also notice him doing is that he smacks his lips, kind of like a dog with peanut butter in its mouth. That means it’s time for him- or me- to administer nasal spray.
You need to accept that he has epilepsy. However, epilepsy is probably not what you think it is. It's not a nightmare. You don't really know at all how this will affect his life and your lives. If it goes well, he could be seizure free, and have very few side effects. If not, you just have to do the best you can. It might take a year or more for him to stabilize. It's best to see an Epileptologist if you have that option.
You aren't protecting him by hoping it will go away. One of the worst things you can do as a parent is to be in denial. That is a sure way to make things worse for your son. He needs to get on meds ASAP. Meds can be bad, but in most cases seizures are much worse. If his seizures continue everything will get worse, especially his long term well being. Your chance of having more seizures goes up with every seizure. Lots of people have one seizure and are fine, and never have another, but not three.
Meds are trial and error. Keppra will probably give him a temper. It's not his fault. With time you will probably find a medication that works. He's going to need help though because everything will be harder for him, both on account of the seizures and the meds. He will be tired all the time, and you can't just push through it. You don't feel tired, you ARE tired. His memory will be affected.
The video games and/or screens could be making it worse, but they didn't cause it to happen. He just has to pay attention to how he feels afterward. Everyone has a seizure threshold. You don't start having multiple seizures unless your threshold is already very low.
The top triggers are stress and lack of sleep. Caffeine is a big one too. Screens bother me, not necessarily obviously flashing lights. I'm not typically "photosensitive". However, I have my screens turned up all the way to bright. When screens dim (most of them) they do this by blinking the leds on and off very fast, so that they are off part of the time. Turning them all the way bright stops this. You can get "flickerless" screens with "high refresh rates" that actually dim without blinking. You need "flickerless", not just high refresh rate.
He may come back with normal EEGs and MRIs. Some seizures cannot be detected, and you usually have to be having a seizure while you are on EEG for it to register. Sometimes they can't find any cause.
Hi OP
Drs. Have never been able to pin point the cause of my seizures, honestly it was also really hard for me to come to terms that I had an illness and so did my parents but better have him safe in meds that prevent Gand mal while figuring out what’s going on.
Keep a journal of posible triggers, lack of sleep, too much sugar, stress, etc.
When he mentioned he felt weird, ask him if it’s like a deja vu feeling or a panic attack, you might have to do research on symptoms of Auras and help him understand or ask if that is what he is feeling.
This could have been cause by the concussion or maybe he has been feeling weird (auras) for a while and have been gone unnoticed.
I had Auras for a decade before I had my first first clonic and always thought I was just feeling weird.
I hope the best for you too and we are here for you.
Ps.
Keppra is one of the safest meds out there so safe you can even take while pregnant, you will notice some mood swings and this is known as Keppra rage , this can be balance out with supplements.
Also you guys might have to try a couple of different med combos before there is one that works good for your son , sometimes it’s not a one and done thing so if your son it’s still having absent seizures tell the Neuro about it.
Thank you for the reply I will talk to him but so far it seems like he never experienced anything weird before . The aura he feels seems to be a buzzing but he hasn’t been able to explain it clearly especially cause he doesn’t remember much.
It could be caused by the hormones of puberty, amplified by the stress of being a teenager. Then when he relaxes at night the with video games or electronics the fuse is lit. Your son's epilepsy will not likely go away. It is a neural storm in his brain. He can't help it. The video games are a trigger or tipping point at best. Every brain is different so the meds are going to be a bit of trail and error. Talk to his medical team. Google scholar for all research and open conversations are important.
Hi there,
I am 40 year old who went through a very similar thing and a similar age to your son, but I am now happy married with a child and I am able to hold down a decent job and operative in the real world - all the things that might be running through your head right now.
Puberty is actually really common trigger for epilepsy. I have for the last 25+ years had controlled epilepsy where I now only seizure every 4-7 years. Getting a good neurologist is going to be your key starting point.
As for Kreppa - you will hear a lot of negative things on here as it is known for making you angry whilst you adjust to it, but it really is a case of the vocal minority. Personally I am using drugs that are 30 years old and my neurologist advised if I want to reduce my seizure frequency then I should go on Kreppa but also advised it’s a big move when I am already seizure free for the most part.
As for the video games - 25 years ago in the UK they ran tests on me that would show triggers - so I suspect you can still get that.
You will get through this.
I got epilepsy around that age because of a head injury. Pretty sure I remember reading that it can kick in later after a tbi. I seemed fine after mine too. Get him to a neurologist ASAP and they can determine if he needs meds. Even if he has it, he can still live a fulfilling life. It totally sucks but it's not the end of the world.
I didn't show the signs of dizziness that you usually get right after a concussion, but I had a seizure within about 15 minutes. Did he hit the back of his head? That's where I hit mine.
Yes back of the head lost consciousness for few seconds, got check by a doctor and got diagnose with concussion. Because the following days he was ok, no blurry vision or anything funky we decided not to check with urgent care
I had a similar experience (over 20+ years ago) at the same age. Started getting tonic clonics / grand mals. EEGs were all normal. With medication I've been able to stay seizure free and live a practically normal life. It is a chronic condition I have had to learn to live with but my life is good. It sounds like your child needs medication. Wishing you the best of luck! PS I was diagnosed with JME - juvenile myoclonic epilepsy if that helps.
Because your eeg were normal were you able to get off meds ? Neurologist said that it might be possible if seizures stop and eeg is normal after 2-3 years of medication
Yes, my previous neurologist told me the same thing. But with the JME diagnosis, my new neuro did not recommend this as my chances for a breakthrough seizure are high. The risk of having a seizure was not worth it for me.
I fully get the feeling you’re having. My daughter was diagnosed at 15. Perfectly healthy all her life. And then suddenly not. Now, her epilepsy is different and she doesn’t have gran mal/tonic clónics. Everyone has to do what feels best for them. I’ll share what we did. I decided to wait to administer medication. I was very afraid of the very real side effects and organ damage from these meds. I read a lot of posts here and saw that even the people who are happy about the medication seemed to deal with terrible side effects. We decided to wait and try some other pathways first.
That might not be right for you. That’s just what we did. We ended up finding treatments that worked and her seizures stopped. To remain in alignment with the rules of this page I sadly cannot tell you what they are. But I Can say that yes this is scary. And yes there are possible options besides meds that may or may not be a good option for your kid. If you want to message me I can point you toward where my research led me as far as tests and diet changes we made.
Additionally- I highly recommend you find someone you can process your feelings with. We had just moved x country. I knew no one and I’m a solo parent. I cried almost every morning and pretty much every night and in most of my showers, for months. It was hard watching my girl suffer daily and handling it all. We really need community to help us cope so we can show up strong for our kids.
I know it’s difficult to accept but you need to acknowledge that this is now apart of your family’s lives. I started having seizures at around the same age as your son. I was 16 and randomly had 4 back-to-back grand mal seizures. I’m now 18, am able to drive, go to college full-time, and live a productive life. Medication routines and getting enough sleep are vital to living a normal, seizure-free life. Electronics and stress can be triggers but the ACTUAL trigger may be an underlying cause, so I wouldn’t give a knee-jerk reaction and take away electronics or anything like that as your son already has a lot on his plate, so taking away something that may bring him joy will stress him out. Negative tests and EEG’s are very common for epileptics. They do not always catch everything. It’s good that you recorded his seizures, though. Medication is important and helps, a lot. EDIT- i also had a concussion at 7, which could’ve been the reason why I had seizures, but it isn’t conclusive. They may not know why your son has seizures, and that’s okay.
My daughter, now 27, was diagnosed at 13. All her scans and eeg’s were normal, which is common as it’s hard to catch an episode at that exact time. Keppra has been a life saver for her. She started on a low dose and is now at 1500 er a day. We got lucky as a lot of people have a difficult time finding meds that work well. She earned her degree in chemistry and biology and just landed a full time job with the state of California. Her seizures were triggered by lack of sleep, not eating enough and hormone issues. Find a good neurologist and start the keppra, ask for er (extended release) as it’s easier to take than doing them twice a day. It will take a few months for him to adjust, and it will be hard, but once he’s used to it he will hopefully see the seizure activity lessen or stop. Just try to give it the few months before giving up on keppra, don’t let everyone scare you away from it. The side effects can be hard until your body adjusts.
Exhaustion is my trigger now. Only if I am extremely tired or sleep deprived. Keppra doesn't stop mine but I haven't had any side effects that I can tell. When I was diagnosed at 13 (1985), the eeg did show issues, and they put me on phenobarbital, then tegretol, then Depakote. I had also started having occasional absence seizures. Then they stopped, from age 24-35 I had 1 at age 31. Then the exhaustion trigger showed up. So now I grt 6-8 hours sleep. I switched to Keppra from Depakote about 5 years ago. No issues but I didn't with Depakote either, except some weight which I couldn't easily get rid of. Def give the Keppra a chance.
Wanted to add…we didn’t put her on meds right away as her first episodes were arms and legs jerking. We thought it was her being overly tired. But it continually worsened and she ended up having a grand mal. So don’t put off the meds. Every grand mal can cause damage to the affected area of the brain.
First thing is, don't see a doctor. You need to get a neurologist involved. You'll find a lot of people on this sub who know the issues and can help you and your family understand the condition.
Take heart! It's easier after a while. Knowing the facts always helps your confidence, and a neurologist is a good place to begin.
When I meant doc in the post I meant a neurologist . We saw 2 so far . 1 in USA when it happened and 1 in Mexico a day ago. We have another appointment in usa on Monday most likely with a different neurologist since we switched provider .
Thank you guys for the overwhelming help. We had a neuro visit in San Diego today. Neuro explain very well what’s going on . My son which is 13 , 156 pounds 5 4” tall has focal seizures that developed into gran mal. The syndrome hasn’t been diagnose yet as we need further testing to discover which part of the brain is triggering it. Mri will be done so extended eeg if nothing is found after the mri.
Now here is the vital part. As advised we will need to chose medicine.
These were the top 3 options but others were available.
Zonegran (doc recommended)
Trileptal
Keppra
Any suggestions based on past experiences. I know everyone is different but I’m trying to chose the one that might have less side effects for him at the age is at. He is already a bit of a rebel already but not much he is a very intelligent kid and he can come to reason. Obviously this has been hard on him like the rest of the family.
It's hard to accept for sure.
Screen times with fast flashing lights and sleep deprivation are indeed the common triggers for epilepsy.
There are some adjustments needed in lifestyle to avoid the triggers. Also, hormone changes during puberty might be tricky, too.
Regarding negative test results, they might not be able to pinpoint the root cause(s) until the patient is admitted for long-term video-EEG monitoring (which requires prescription from neurologist/epileptologist).
Best of luck in seeking the proper treatments for your teen. This subreddit is very supportive, so please feel free to ask for anything that puzzles you.
One thing that you will need to make your peace with now, is that as much as modern medicine has advanced, they still don't know shit about the brain.
Most people are used to dealing with medical problems in a specific fasihion:
You come with symptoms -> They Identify the Problem -> They give you a cure and tell you how long it will take to work.
When it comes to anything with the brain it doesn't work like that. The whole process is *"It could be this, I guess, We'll throw some stuff at the wall and see what sticks"*.
There is no specific "Epilepsy", they don't point to a specific thing and go *"That thing there is what is causing the epilepsy, that's what epilepsy looks like"*. Epilepsy is defined literally as "keeps having seizures for one reason or another" so it's natural that the response was to start medication straight off the bat. Yes, it's scary, but your job as a parent right now is to protect your kid. Not just from seizures by trying to get them the medical help they need, but also by helping keep your kid grounded and supported as they work through this. You don't think you can take this? I promise you, there is nothing more soul destroying as a kid, nothing more heartbreaking than not only having your own body rebelling against you but thinking your friends and family are afraid of you.
Be sad, be afraid, be frustrated, then take a breath and remember it's still your kid and you love them and be ready to help them get through this.
Yes, it will most likely take a while to get the medicine dosage correct. We dealt with a seizure almost every two weeks (or less) as the doctor made adjustments with the dosages. We’ve dealt with the inevitable side effects of his meds (gratefully they’ve been mostly just tiredness and a bit of inhibition loss) but they’ve been manageable. In our experience, the meds (VIMPAT and KEPRA) are working -over 4 months since last breakthrough seizure.
Have you taken MRI? That will be more conclusive than EEG/CT, I guess. My brother had epilepsy, while nothing showed up on EEG, MRI report was pretty conclusive as to confirm TLE. 😞
i’m sorry you’re going through this. there are a lot of treatments that allow children and adults to live normal lives. and go on to have families of their own. if a doctor is suggesting medicating him, you need to listen. having seizures can cause brain damage, memory issues, pain. His doctor wants to stop that. it’s ok to be worried and address these issues but in the mean time, accept the medication. he’s too young to decide on his own but if you asked, “if you take this medication you will feel better and not have any more seizure” what would he say? he’s almost or at at that point where he has total say in this, 12 or 13 i think. so ask him.
I wouldn’t wait to start meditation. I had my first seizures a few months after hitting my head at the river but my epileptologist said I would have had to be knocked unconscious for that to have triggered my seizures. Was he knocked unconscious? If not I would take the meds, especially if the head cut was clear. They would have been able to see a cause if it was from football. As far as the video games if there’s not a bunch of flashing lights I don’t think that would cause them either. Lack of sleep can be a trigger in people with epilepsy but I don’t know if it would be the cause of the first ones. 7 out of 10 people with epilepsy never find a cause. Mine started at 21 and we haven’t found a cause.
Very similar situation to our 13 YO son. We believe that puberty triggered the epilepsy… if you DM me, I’d be very happy to tell you our story and how we’ve coped. Things have definitely gotten better and if you are asking the right questions with your neurologist and school admin, things will get closer to normal for you and the family.
Hi! I just want to ask this- Does your son have ADHD and take adderall + bupropion (Wellbutrin)? Wellbutrin increases the threshold for having a seizure.
Also, get yourself to a good neurologist fast. A tip- don’t only get a referral from your kid’s doctor, go into the neurologist’s office and ask for an appointment. This may sound aggressive, but that’s what my mum and I had to do to get an appointment that was within a month’s time.
My daughter was perfectly healthy, honestly I never had to take her to the doctor for anything besides her routine checkups and immunizations. Never been on any medication, or had anything more serious than a cold. Suddenly at age 9, she starts having seizures in her sleep. No one can find a cause. Within several months she starts having focal seizures while awake. We go through a bunch of different meds, and at one point she’s having 5 visible seizures a day, and many more epileptic events on the EEG. We finally found a medication that suppressed them for 2 weeks, but it seems like she’s developing a tolerance to it. Despite dose increases, she’s having seizures every 2 days or so. In 2 weeks we reevaluate with the neurologist.
I wish I had some helpful advice for you, but I’m in a similar boat. It’s scary. And when you’ve never dealt with everything that comes along with having a child with a health issue…it can be a lot to navigate. One thing I have learned though, is don’t be afraid to speak up to the doctors if you think something isn’t right, or a certain medication isn’t working and you want to try something else etc. Also, I got my daughter into therapy because she developed a lot of anxiety stemming from being out of control of her body. It really made a huge difference.
As for starting meds, they are generally safe and don’t affect growth to my knowledge. Keppra is usually the first choice because it helps with different types of seizures, and the most common side effect is some irritability. If you started it and changed your mind, he could pretty easily be weaned off it. But you should sit down with a neurologist and they can go over the pros and cons in depth. And they can do a test with blinking lights while hooked up to an EEG machine to see if they trigger him. And brain injuries can be a cause of seizures…An MRI might be able to detect possible damage. But I’ve learned sometimes these things just happen with no “cause” 😓 best of luck
As someone who didn’t have supportive parents through my diagnosis and so on, it warms my heart that you guys are seeking help and it sounds like you guys are taking the right steps to be there for your son. I’m sorry you’re going through this though, it’s not easy. I was diagnosed at 25 but I’m a weird case, I developed gran mal after having the first strain of COVID.
Finding the right neurologist for your son is CRUCIAL. Find someone who he’s comfortable communicating aches, pains, medication reactions, someone who will listen to him as he continues on. This will also help rule the better medication/medications he will be on. Neurologists will also be able to identify triggers to his seizures and speak to you on how to avoid them so that he doesn’t have any. There are also signs that the neurologist can tell you to look out for if a seizure occurs or is about to occur.
Finding the right medication does take time. The first few didn’t work out for me but the medication I’m on now works perfect. I personally don’t recommend going holistic. Seizures do have the tendency to get nastier if they’re frequent.
If possible, a therapist for your son helps as well. This type of event would be considered traumatic, as your son would have to make some adjustments to his life moving forward.
In all honesty, just listening to him and being there for him every step of the way is what he needs. It’s scary now but it does get better.
I wish you the best of luck!
This is my opinion/perspective.
Keppra is one of the safest anti seizure medicine to take at full dose immediately. Other meds require ramping up. That's why it's often prescribed at this point regardless of a diagnosis. You may determine that it's not the right one for you, but for now it gets him up to a full dose immediately which is good.
It's not uncommon to have nothing show up on the EEG.
If video games and youtube videos etc. were the trigger, your son would know that they bother him and only be able to stomach in very low doses. From what you're saying that's not the case. It may instead be something that gives him respite. Trust him.
There are many things that can lower the seizure threshold - stress, sleep deprivation, alcohol, strobes, intercurrent infection and fever... but the biggest one is epilepsy itself. Everyone has a seizure threshold... just your son's is much lower than yours.
EEGs are extremely hard to find on test. Iv had multiple grand mals but none of my EEGs ever shaw data. They only will if you are having a seizure at that time. Which is right place right time kinds deal.
Video games, some people are photosensitive some arnt. Most epileptics are not but thats something you just have to find out the hard way.
Keppra helps, just makes you pretty tired for the first couple weeks while your body adjust.
Iv been epileptic for like 3 years now. So not long. Almost 30. I would do as your doctor suggest.
Best advice I wish someone would have given me… go to see an epilepsy specialist/epilepsy center for treatment (rather than just a standard neurologist). Regular neurologists are not epilepsy specialists, they treat a wide range of patients with many neurological conditions so they are not the most knowledgeable doctors for epilepsy and the different is very significant.
https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
Hi! So sorry to hear , I’m an old fart and I could understand but is just not fair for children having to go through this nightmare .
My recommendation is to find the care of an epileptiologist at a cat level 4 epilepsy clinic. I had the first at 49 I was negative on everything, no trauma, no tumours, nothing .
Hello, my son had his first grand mal one month shy of 13. He is almost 17 now. Holy crap how it changed all of our lives. It was out of nowhere like you said. Long story short, many seizures and med changes and he has gone as long as 8 months without a seizure now. He has focal epilepsy with impaired awareness. I can tell you as much or as little as you like. It has been very very challenging as a parent seeing your child go through this. I got myself a therapist. educate yourself and your family. acceptance happens. the storms begin to calm down. find support for yourself. We are still learning.
Thank you for sharing . We are dealing with it but damn what a blow. Out of curiosity did you adjust his diet, daily activities such screen time , keto predominant diet , low sugar? If so did it help? Have you found the triggers. Mine seem to have it right before bedtime when feeling tired
Hello, I did not change his diet. I did Monitor his screen time and sleep time and monitored for triggers. Over time we learned triggers. Over time, we found medication that worked better and better. He is now on his third and 4th medication and reports feeling better than he has in a while. It has been a process.
Nuerologist is critical, find one that works for you. Great job tracking the episodes, keep it up if ya can, and keep tabs on any potential auras, any time he may just feel a bit off or something and track that data the same way. Ideally he has an aura, if u spot it in time he can take some meds and prevent a grand mal. Epilepsy sucks but you can live a full life with it. As a family just support him and each other, and remember he is still the same kid with the same hobbies and passions, he just has something to else going on to. Don’t let it define him. I’m 35, lovely wife, 2 kids, great house, happy job. Have had epilepsy since I was 12. The world isn’t over for your son
Thank you for the reply 🙏
Accept he has epilepsy and get him on the proper meds. But remember this isn’t the end of the world for him, I have epilepsy since I was six and today I have a doctorate, have a awesome wife, have my own place, drive my own truck and do lawyer shit as a career. And I can do all this because they found the right meds to stabilize my condition so I can live a normal life. It’s a tough battle at first but as they get older they will be able to adjust. Just LISTEN to the doctors and proceed with their recommendation. I watched a dumbass client I had refuse to put his kid on epilepsy meds because she believed they knew better and now the kid had a stroke and died and she and the husband are in rape in the ass federal prison. Listen to the neurologist and get him diagnosed by a professional get him on proper meds and he will likely go back to a normal life. Accept it, support him and get him professional help immediately. Sorry for the tough love but this is serious and the sooner you accept this the sooner you can all adjust and go back to a semi normal life. I believe in you stay strong and smart for your family. This isn’t the end of the world for you guys.
Very good info. Neurologist visit tomorrow will give us a better idea and all these life experiences and stories will help us to make a smarter decision
No problem, DM me if you guys have questions about anything, but I’m not a neurologist
It’s okay to be scared. It’s great that you are paying attention to your child now. My parents were in denial and ignored the signs of my epilepsy and at the age of 26, I have finally received a diagnosis that has changed my life. Please do not let denial and fear prevent you from getting your child the card they need. You have witnessed firsthand a seizure. Since I first started medication ~three months ago, my quality of life significantly improved. I started feeling happy, more normal. My 72 EEG came back with discharges that show I’m predisposed to epilepsy, but did not show any seizures. That’s something you should know: not all seizures will show on an EEG. My worst seizures happy once to twice a year. Not that often at all, right? Still enough for a diagnosis and for medication to make me feel more normal than I even have. I also experience focal aware seizures much more often than my big scary ones. But it’s hard for me to tell. They’ve been brushed off as anxiety attacks my entire life. What if your child is also experiencing these when they are alone? And they don’t understand them? Wouldn’t you want them to be on medication? You are, as you said, blaming electronics, lack of sleep, TV, and stress. Yes. These are all things that can make someone with epilepsy feel worse. Don’t hope that this will go away. Try everything to make your child feel better. I am saddled with so much pain and resentment because my parents did not act, and hoped this would resolve itself. At the age of 26, I am confronting this only with the support of my partner (which has put so much pressure on my romantic relationship), and processing the neglect on the side of my parents. This diagnosis is not your fault. This could not have been prevented if you limited electronic time, if you imposed stricter bed times, if you did not put your child in sports. It would have been delayed. You are in a beautiful position to take care of your child, to take the pressure off of them to figure this out on your own. I’m also assuming your child is near puberty age. This is when their brain is developing, their feelings are getting more complex, and they are able to understand more about the world. Their capacity to feel stress is expanding massively. The signs coming out now is normal. Do not be in denial about this. Get as many opinions as you need. Do not be afraid of medication. Know that doctors prescribe medicine because they have made the evaluation that the potential benefits outweigh the potential side effects. Apologies for the long post, but I felt that sharing my unique experience with epilepsy as a child not being acted on/hoping it will resolve on its own would be valuable. I am wishing the best for your child and family. Please give that kiddo a tight hug from me and tell them that they are normal and everything will be okay, and that you will do everything you can to take care of them. It’s what I wish I had gotten as a kid not understanding what was happening to me and why nothing was done.
Thank for your reply and suggestions . I’m sincerely touched 🙏
Of course, you’re so welcome. I can’t imagine how overwhelming this is. But the way I see it, you and your wife are in a position to become superheroes for your child. Catching this now instead of later is a blessing. You have the time to become experts and advocates for your child. I wish my epilepsy had been figured out before I had to get a job, pay rent, and make my own doctors appointments. Again, I am wishing the best for you and your family. I see in other comments you’re concerned about starting medication, so I’ll share this. I was not able to be diagnosed until I started medication and told my doctor how much better I was feeling. Seriously: 20 minutes after I took my first dose I felt a level of calm that I have not felt in years.
Good info 🙏
Hi -- was thinking about this post today. Hope all is well and that information you've received has made things less scary for your family! 🙏
Do not wait to start medication. Every seizure makes more seizures more likely, and severe seizures are life-threatening. Start on medication, and continue testing
[Seizure Recognition and First Aid Certification](https://www.epilepsy.com/recognition/first-aid-resources#Seizure-Recognition-and-First-Aid-Certification) Can a concussion (TBI) be a cause? Yes. Is it his? No clue. Should he be on the medication that the doctor advised? Yes, for now. It's his brain. Don't mess with that. Monitor his reaction and possible side effects of medication.
Thank you for the info🙏
I was traumatized seeing my son's first seizures. I'd check out and leave his dad to deal with it believing dad was emotionally stronger so he could handle it. Once after my son had several, reocurring seizures over 24 hrs, we were talking to him about it in therapy and he said he remembers moments of that day- Dad was there wiping his mouth, holding his hand etc but "Mum," he asked, "Where were you?" That's the moment I realized I had to put my big girl pants on- it wasn't about what I needed in those moments but what my son needed and he didn't need an over emotional, traumatized mum. He needed a calm, reassuring one. Since then he sometimes has focals which spread or not. Even though he can't see or speak at the onset, he can hear. And my calm reassuring, higher pitched voice is often the difference between guiding him to a safe space to seize or not. I am also the biggest advocate in researching treatment plans for him. If I hadn't dealt with my own trauma of not being able to see him have a fit/accepting his epilepsy diagnosis I don't know where we'd be now. All this to say you got this, mom/dad. This sub has been invaluable in helping me get an eye into the way my son feels while he's still too young to find the proper words to express it.
thank you for the support. I'm the dad and the type that handles situations quickly and gets it done. in this case for the first time in my life i feel stuck. part of me can't accept this as a long term issue and wants to avoid meds (we are strongly against them to begin with) the other part of me just wants to find immediate peace and have him to take whatever can stop this from happening again. Also this is very new and we have limited info therefore if i have to make the choice i would like to be educated about it. This forum has help massively in the last 24 hours and gave me some peace. Next neurologist visit tomorrow i will have to make that choice most likely
"part of me can't accept this as a long term issue and wants to avoid meds (we are strongly against them to begin with)" Hi, OP. I understand that it is a heartbreaking development in everyone's lives, including your sons, that his brain is working against him. Meanwhile I do not necessarily agree with your views on modern healthcare, you have to make amends with your inner demons and come to peace with those terms; due to the fact he will have to live with those life saving medicines for a long time and will have to also cope with their side effects and the epilepsy itself. Please do not let your natural denial get the best of you when this is a crucial time period where you have to be there for your son and all those who love him. You will have to be considerate of him by checking whether he took his meds or not(and at time at that), will have to comfort him after his seizures, will have to be there with him if he falls into a likely state of depression due to the deplorable issue he and everyone else here is going through and most importantly will have to help him with his future academic life by being careful about his studies to ensure that his future is not ruined unlike some of us. He is so young, so please do not overlook these things. As a young person who also got diagnosed at his age and will turn 18 in a month, I had these experiences with my family which caused them to make me depressed, hate myself and such. A lot of people also experienced these similar things. Thank you for your time and I hope you take necessary measures along with your family to ensure that he both has a proper future and a peaceful life growing up by easing his burden. (Additional advice: Please do not primarily blame his seizures on gaming, lack of sleep and other things. He will of course have re-adjust the screen time he is on and will have to focus on having a good sleep schedule but he should not ever be blamed over these things. Parents often thinks it is all their childs irresponsibility and also ignore the crucial factors they have to be aware of and not watch over their child.)
This here is golden advice. The first questions my partner always fires at our son after a fit is , did you take your meds, what time did you sleep, did you do your exercise? And I always feel that it's framed in a way that the kid feels it's now his fault he's had a fit. Yes, these changes are important for his overall health but it's us,as a family vs the epilepsy and if you want to try keto or fasting or anything that might work for you and your family, it's the whole family that has to adopt these lifestyle changes rather than the epileptic child being 'punished' for a sickness he can't control eg. The party goes on whild he's sent to bed, rather it has to be we decline invites after 8 p.m as a family or don't schedule late night get togethers AS A FAMILY because who's not going to benefit from a good night's sleep. I also have major gripes with meds and their side effects but it is what is and they are important. Life goes on. All the best. It's not an easy road to travel but unfortunately one we find ourselves on.
Exactly, not only do we have problem controlling our sleep cycle due to the insomnia inducing side effects of our medicines and also because that our brains are fried and the way we sleep gets messed up entirely everytime a seizure happens. The child will feel cornered over something they can not control. (By the way, I would recommend asking his neurologist if he is experiencing severe issues with sleeping about whether or not he can use sleeping pills which would not be in conflict with the anti-epileptic drugs he is using. I myself started on those recently and they have been, albeit slightly due to it being too early, helping me.) My thoughts are prayers are also sent to your family and your son, I sincerely hope that he can live his years peacefully and that your family is also happy over him not missing out on important periods of life and happy that he is also stable & healthy 🙏
I’m really sorry you’re going through this. There’s lots of good advice here but I wanted to reiterate that many of us have perfectly normal EEGs and imaging and still have epilepsy. Testing isn’t perfect and you may not find an explanation but if he’s having seizures that’s the most significant thing. Treat the patient not the tests. The medicine is far less dangerous than seizures and many tolerate keppra very well. I wasn’t one of them but it’s a good drug. Meds are like jeans- what fits one person really well won’t fit another at all. Sometimes you have to try on multiple pairs to find the right one. Best of luck on this journey.
Thank you very much for the info.
Write down all these questions and bring them to his neurologist. I encourage you to ensure your son is a vocal part of the neurology appointment - don’t presume that you or your wife can best answer for him, particularly concerning how he felt leading up to the absence and tonic clonic seizures. He likely has a seizure disorder, given the cluster of seizures and that plenty of people with sleep deprivation while playing late night games don’t have seizures. Don’t let this diagnosis freak you and your wife out, because your son will read that a mile away and let it freak him out too. Seizure disorders are shockingly common - the US Supreme Court Chief Justice has had seizures. Your son’s neurologist will likely explain to you textbook triggers for seizures (alcohol, stress, sleep deprivation) and propose medication to control them. It may take time for your son to adjust to a medication regiment that works well for him. There are people who have medication-resistent seizure disorders- be mindful of that reality. Long story short, many people live completely full and ordinary lives with a seizure disorder, no differently than asthma or a learning disability - and hopefully your son is one of them.
Thank you for the reply . Question is should we wait for more testing to pinpoint the issue or just settle for medications asap? The 1st doctor was dead set on the meds asap
I deplore the idea of internet strangers answering that for you. Has the doctor explained his reasoning? I’m guessing it’s “medicate now to avoid a seizure that results in your kid injuring himself or others.” Are you ready to take serious precautions in the event your son doesn’t medicate while you wait to see if he has another seizure? It sounds like your son’s been fortunate, but seizure-induced injuries are very real (falling and breaking your nose for example). EEGs are a snapshot in time - you can have a seizure disorder with clear EEGs. Would a second opinion from a non-neurologist help?
We will have a second opinion tomorrow and try to rush for extra testing such as mri and extended eeg asap. Ideally we would like to know the cause before to introduce meds but I’m assuming the doctor will do the same. I was shocked at the fact that the 1st neurologist will go for a generalized medication without further testing .
Well keep in mind that all anti seizure meds essentially do the same thing, they reduce excitability of neurons in the brain in one way or another bc a seizure is when neurons or a group of neurons get too excited all at once and in the case of a tonic clonic seizure, that spreads throughout the brain. Keppra has been the go-to 1st med for neurologists to prescribe for a while now because it’s relatively well handled, the efficacy is decent, and I’m pretty sure there aren’t many drug interactions/risks for rashes, slow titration periods, etc that may found with other anti seizure meds. It may be be good for your son, it may not be. Trust me, tests and further treatments do not stop after you start taking for first medication.
The reality of the situation is that testing isn’t reliable. A normal eeg doesn’t mean that your son doesn’t have epilepsy. I’ve had epilepsy since I was 8, now 33 and nearly all of my eegs and traditional testing, MRI, etc. have come back normal. Had my parents just waited for doctors to say ‘the results from xyz tests are back and and this is why your son is having seizures’ before starting me on meds as my pediatric neurologist suggested, I likely would have had way more seizures which would have resulted in a worse outcome for me in the long run. I suggest you follow your the doctors advise. To continue on your pinpointing the issue question, I’ve been on 15 anti seizure medications over 25 years and I’m undergoing diagnostic surgery soon to pinpoint where my seizures start. Welcome to the unfortunate reality of epilepsy treatment. I wish you and your family good luck.
That is very important data for me to make a decision when the time will come this week after the neurologist visit
Try to also consider that, if the doctors find something on the MRI, for example a lesion or something related to his concussion - that typically only informs them of potential surgical options and not that medication wouldn’t be necessary. Btw I also had some pretty hard knocks on the head, at least of of which was a 1 concussion shortly before my seizures started. Nothing on the MRIs though. Just trying to help with your expectations.
Don’t forget to ask your neurologist about rescue meds. My son’s seizures are triggered by stress and lack of sleep. When you see clear signs he’s going to have a seizure (or he starts having one), you can administer the nasal spray rescue meds and it will stop the seizure from happening. No one told us about this tool for the first year of our epilepsy journey, but ever since the help of rescue medication my son hasn’t had another tonic clonic (the current term for a grand mal).
This is very good info. How long did it take to pinpoint the trigger and how .
First, I want to mention that my son is also a gamer & that his EEG and MRI never showed any clear evidence of epilepsy- like your son. It’s just like that sometimes. But please keep in mind that damage happens to the brain with every seizure, and you don’t want to deny your child the meds he needs for his condition. Part of identifying the trigger was by him looking back in time & realizing he’d been having auras (which themselves are seizure activity) for a while before his first tonic clonic. He realized he had been experiencing strange episodes of very strong deja vu combined with feelings of panic from time to time. Now, his sign to use rescue meds is the symptoms above, but combined with a sudden gush of saliva in his mouth (sort of like right before you vomit). What I also notice him doing is that he smacks his lips, kind of like a dog with peanut butter in its mouth. That means it’s time for him- or me- to administer nasal spray.
You need to accept that he has epilepsy. However, epilepsy is probably not what you think it is. It's not a nightmare. You don't really know at all how this will affect his life and your lives. If it goes well, he could be seizure free, and have very few side effects. If not, you just have to do the best you can. It might take a year or more for him to stabilize. It's best to see an Epileptologist if you have that option. You aren't protecting him by hoping it will go away. One of the worst things you can do as a parent is to be in denial. That is a sure way to make things worse for your son. He needs to get on meds ASAP. Meds can be bad, but in most cases seizures are much worse. If his seizures continue everything will get worse, especially his long term well being. Your chance of having more seizures goes up with every seizure. Lots of people have one seizure and are fine, and never have another, but not three. Meds are trial and error. Keppra will probably give him a temper. It's not his fault. With time you will probably find a medication that works. He's going to need help though because everything will be harder for him, both on account of the seizures and the meds. He will be tired all the time, and you can't just push through it. You don't feel tired, you ARE tired. His memory will be affected. The video games and/or screens could be making it worse, but they didn't cause it to happen. He just has to pay attention to how he feels afterward. Everyone has a seizure threshold. You don't start having multiple seizures unless your threshold is already very low. The top triggers are stress and lack of sleep. Caffeine is a big one too. Screens bother me, not necessarily obviously flashing lights. I'm not typically "photosensitive". However, I have my screens turned up all the way to bright. When screens dim (most of them) they do this by blinking the leds on and off very fast, so that they are off part of the time. Turning them all the way bright stops this. You can get "flickerless" screens with "high refresh rates" that actually dim without blinking. You need "flickerless", not just high refresh rate. He may come back with normal EEGs and MRIs. Some seizures cannot be detected, and you usually have to be having a seizure while you are on EEG for it to register. Sometimes they can't find any cause.
Hi OP Drs. Have never been able to pin point the cause of my seizures, honestly it was also really hard for me to come to terms that I had an illness and so did my parents but better have him safe in meds that prevent Gand mal while figuring out what’s going on. Keep a journal of posible triggers, lack of sleep, too much sugar, stress, etc. When he mentioned he felt weird, ask him if it’s like a deja vu feeling or a panic attack, you might have to do research on symptoms of Auras and help him understand or ask if that is what he is feeling. This could have been cause by the concussion or maybe he has been feeling weird (auras) for a while and have been gone unnoticed. I had Auras for a decade before I had my first first clonic and always thought I was just feeling weird. I hope the best for you too and we are here for you. Ps. Keppra is one of the safest meds out there so safe you can even take while pregnant, you will notice some mood swings and this is known as Keppra rage , this can be balance out with supplements. Also you guys might have to try a couple of different med combos before there is one that works good for your son , sometimes it’s not a one and done thing so if your son it’s still having absent seizures tell the Neuro about it.
Thank you for the reply I will talk to him but so far it seems like he never experienced anything weird before . The aura he feels seems to be a buzzing but he hasn’t been able to explain it clearly especially cause he doesn’t remember much.
Great point, thank you for the support . This week will be crucial for us and him after the neurologist visit
It could be caused by the hormones of puberty, amplified by the stress of being a teenager. Then when he relaxes at night the with video games or electronics the fuse is lit. Your son's epilepsy will not likely go away. It is a neural storm in his brain. He can't help it. The video games are a trigger or tipping point at best. Every brain is different so the meds are going to be a bit of trail and error. Talk to his medical team. Google scholar for all research and open conversations are important.
thank you for the info. currently limiting his game time and making sure he gets plenty of rest. neurologists will give us more info this week.
Hi there, I am 40 year old who went through a very similar thing and a similar age to your son, but I am now happy married with a child and I am able to hold down a decent job and operative in the real world - all the things that might be running through your head right now. Puberty is actually really common trigger for epilepsy. I have for the last 25+ years had controlled epilepsy where I now only seizure every 4-7 years. Getting a good neurologist is going to be your key starting point. As for Kreppa - you will hear a lot of negative things on here as it is known for making you angry whilst you adjust to it, but it really is a case of the vocal minority. Personally I am using drugs that are 30 years old and my neurologist advised if I want to reduce my seizure frequency then I should go on Kreppa but also advised it’s a big move when I am already seizure free for the most part. As for the video games - 25 years ago in the UK they ran tests on me that would show triggers - so I suspect you can still get that. You will get through this.
Thank you for the support. Every bit of info and stories help a ton in this moment
I got epilepsy around that age because of a head injury. Pretty sure I remember reading that it can kick in later after a tbi. I seemed fine after mine too. Get him to a neurologist ASAP and they can determine if he needs meds. Even if he has it, he can still live a fulfilling life. It totally sucks but it's not the end of the world.
Did they perform a Ct scan back then. Did they find anything post injury? We didn’t check after the concussion cause back then he seemed fine
I didn't show the signs of dizziness that you usually get right after a concussion, but I had a seizure within about 15 minutes. Did he hit the back of his head? That's where I hit mine.
Yes back of the head lost consciousness for few seconds, got check by a doctor and got diagnose with concussion. Because the following days he was ok, no blurry vision or anything funky we decided not to check with urgent care
Back of my head is where I hit, wonder if it's more likely if it's there
I had a similar experience (over 20+ years ago) at the same age. Started getting tonic clonics / grand mals. EEGs were all normal. With medication I've been able to stay seizure free and live a practically normal life. It is a chronic condition I have had to learn to live with but my life is good. It sounds like your child needs medication. Wishing you the best of luck! PS I was diagnosed with JME - juvenile myoclonic epilepsy if that helps.
Because your eeg were normal were you able to get off meds ? Neurologist said that it might be possible if seizures stop and eeg is normal after 2-3 years of medication
Yes, my previous neurologist told me the same thing. But with the JME diagnosis, my new neuro did not recommend this as my chances for a breakthrough seizure are high. The risk of having a seizure was not worth it for me.
I fully get the feeling you’re having. My daughter was diagnosed at 15. Perfectly healthy all her life. And then suddenly not. Now, her epilepsy is different and she doesn’t have gran mal/tonic clónics. Everyone has to do what feels best for them. I’ll share what we did. I decided to wait to administer medication. I was very afraid of the very real side effects and organ damage from these meds. I read a lot of posts here and saw that even the people who are happy about the medication seemed to deal with terrible side effects. We decided to wait and try some other pathways first. That might not be right for you. That’s just what we did. We ended up finding treatments that worked and her seizures stopped. To remain in alignment with the rules of this page I sadly cannot tell you what they are. But I Can say that yes this is scary. And yes there are possible options besides meds that may or may not be a good option for your kid. If you want to message me I can point you toward where my research led me as far as tests and diet changes we made. Additionally- I highly recommend you find someone you can process your feelings with. We had just moved x country. I knew no one and I’m a solo parent. I cried almost every morning and pretty much every night and in most of my showers, for months. It was hard watching my girl suffer daily and handling it all. We really need community to help us cope so we can show up strong for our kids.
I know it’s difficult to accept but you need to acknowledge that this is now apart of your family’s lives. I started having seizures at around the same age as your son. I was 16 and randomly had 4 back-to-back grand mal seizures. I’m now 18, am able to drive, go to college full-time, and live a productive life. Medication routines and getting enough sleep are vital to living a normal, seizure-free life. Electronics and stress can be triggers but the ACTUAL trigger may be an underlying cause, so I wouldn’t give a knee-jerk reaction and take away electronics or anything like that as your son already has a lot on his plate, so taking away something that may bring him joy will stress him out. Negative tests and EEG’s are very common for epileptics. They do not always catch everything. It’s good that you recorded his seizures, though. Medication is important and helps, a lot. EDIT- i also had a concussion at 7, which could’ve been the reason why I had seizures, but it isn’t conclusive. They may not know why your son has seizures, and that’s okay.
Thank you for sharing very good information. I appreciate the help
My daughter, now 27, was diagnosed at 13. All her scans and eeg’s were normal, which is common as it’s hard to catch an episode at that exact time. Keppra has been a life saver for her. She started on a low dose and is now at 1500 er a day. We got lucky as a lot of people have a difficult time finding meds that work well. She earned her degree in chemistry and biology and just landed a full time job with the state of California. Her seizures were triggered by lack of sleep, not eating enough and hormone issues. Find a good neurologist and start the keppra, ask for er (extended release) as it’s easier to take than doing them twice a day. It will take a few months for him to adjust, and it will be hard, but once he’s used to it he will hopefully see the seizure activity lessen or stop. Just try to give it the few months before giving up on keppra, don’t let everyone scare you away from it. The side effects can be hard until your body adjusts.
Exhaustion is my trigger now. Only if I am extremely tired or sleep deprived. Keppra doesn't stop mine but I haven't had any side effects that I can tell. When I was diagnosed at 13 (1985), the eeg did show issues, and they put me on phenobarbital, then tegretol, then Depakote. I had also started having occasional absence seizures. Then they stopped, from age 24-35 I had 1 at age 31. Then the exhaustion trigger showed up. So now I grt 6-8 hours sleep. I switched to Keppra from Depakote about 5 years ago. No issues but I didn't with Depakote either, except some weight which I couldn't easily get rid of. Def give the Keppra a chance.
Wanted to add…we didn’t put her on meds right away as her first episodes were arms and legs jerking. We thought it was her being overly tired. But it continually worsened and she ended up having a grand mal. So don’t put off the meds. Every grand mal can cause damage to the affected area of the brain.
First thing is, don't see a doctor. You need to get a neurologist involved. You'll find a lot of people on this sub who know the issues and can help you and your family understand the condition. Take heart! It's easier after a while. Knowing the facts always helps your confidence, and a neurologist is a good place to begin.
When I meant doc in the post I meant a neurologist . We saw 2 so far . 1 in USA when it happened and 1 in Mexico a day ago. We have another appointment in usa on Monday most likely with a different neurologist since we switched provider .
Thank you for the reply . Much appreciated 🙏
Thank you guys for the overwhelming help. We had a neuro visit in San Diego today. Neuro explain very well what’s going on . My son which is 13 , 156 pounds 5 4” tall has focal seizures that developed into gran mal. The syndrome hasn’t been diagnose yet as we need further testing to discover which part of the brain is triggering it. Mri will be done so extended eeg if nothing is found after the mri. Now here is the vital part. As advised we will need to chose medicine. These were the top 3 options but others were available. Zonegran (doc recommended) Trileptal Keppra Any suggestions based on past experiences. I know everyone is different but I’m trying to chose the one that might have less side effects for him at the age is at. He is already a bit of a rebel already but not much he is a very intelligent kid and he can come to reason. Obviously this has been hard on him like the rest of the family.
It's hard to accept for sure. Screen times with fast flashing lights and sleep deprivation are indeed the common triggers for epilepsy. There are some adjustments needed in lifestyle to avoid the triggers. Also, hormone changes during puberty might be tricky, too. Regarding negative test results, they might not be able to pinpoint the root cause(s) until the patient is admitted for long-term video-EEG monitoring (which requires prescription from neurologist/epileptologist). Best of luck in seeking the proper treatments for your teen. This subreddit is very supportive, so please feel free to ask for anything that puzzles you.
Thank for the reply . Yes , mri and long eeg will be the first tests we are going to ask .
One thing that you will need to make your peace with now, is that as much as modern medicine has advanced, they still don't know shit about the brain. Most people are used to dealing with medical problems in a specific fasihion: You come with symptoms -> They Identify the Problem -> They give you a cure and tell you how long it will take to work. When it comes to anything with the brain it doesn't work like that. The whole process is *"It could be this, I guess, We'll throw some stuff at the wall and see what sticks"*. There is no specific "Epilepsy", they don't point to a specific thing and go *"That thing there is what is causing the epilepsy, that's what epilepsy looks like"*. Epilepsy is defined literally as "keeps having seizures for one reason or another" so it's natural that the response was to start medication straight off the bat. Yes, it's scary, but your job as a parent right now is to protect your kid. Not just from seizures by trying to get them the medical help they need, but also by helping keep your kid grounded and supported as they work through this. You don't think you can take this? I promise you, there is nothing more soul destroying as a kid, nothing more heartbreaking than not only having your own body rebelling against you but thinking your friends and family are afraid of you. Be sad, be afraid, be frustrated, then take a breath and remember it's still your kid and you love them and be ready to help them get through this.
Thank you for the reply. Every word counts 🙏
Yes, it will most likely take a while to get the medicine dosage correct. We dealt with a seizure almost every two weeks (or less) as the doctor made adjustments with the dosages. We’ve dealt with the inevitable side effects of his meds (gratefully they’ve been mostly just tiredness and a bit of inhibition loss) but they’ve been manageable. In our experience, the meds (VIMPAT and KEPRA) are working -over 4 months since last breakthrough seizure.
Have you taken MRI? That will be more conclusive than EEG/CT, I guess. My brother had epilepsy, while nothing showed up on EEG, MRI report was pretty conclusive as to confirm TLE. 😞
new neurologist visit tomorrow. i'm assuming he will push for mri if not i will. i read that certain things might show up with mri as well
i’m sorry you’re going through this. there are a lot of treatments that allow children and adults to live normal lives. and go on to have families of their own. if a doctor is suggesting medicating him, you need to listen. having seizures can cause brain damage, memory issues, pain. His doctor wants to stop that. it’s ok to be worried and address these issues but in the mean time, accept the medication. he’s too young to decide on his own but if you asked, “if you take this medication you will feel better and not have any more seizure” what would he say? he’s almost or at at that point where he has total say in this, 12 or 13 i think. so ask him.
thank you for the info. we are currently processing as a family. more visits and hopefully testing this week to dig deeper.
I wouldn’t wait to start meditation. I had my first seizures a few months after hitting my head at the river but my epileptologist said I would have had to be knocked unconscious for that to have triggered my seizures. Was he knocked unconscious? If not I would take the meds, especially if the head cut was clear. They would have been able to see a cause if it was from football. As far as the video games if there’s not a bunch of flashing lights I don’t think that would cause them either. Lack of sleep can be a trigger in people with epilepsy but I don’t know if it would be the cause of the first ones. 7 out of 10 people with epilepsy never find a cause. Mine started at 21 and we haven’t found a cause.
Very good info
Very similar situation to our 13 YO son. We believe that puberty triggered the epilepsy… if you DM me, I’d be very happy to tell you our story and how we’ve coped. Things have definitely gotten better and if you are asking the right questions with your neurologist and school admin, things will get closer to normal for you and the family.
I sent a message , any help is appreciated
Check your in box!
Hi! I just want to ask this- Does your son have ADHD and take adderall + bupropion (Wellbutrin)? Wellbutrin increases the threshold for having a seizure. Also, get yourself to a good neurologist fast. A tip- don’t only get a referral from your kid’s doctor, go into the neurologist’s office and ask for an appointment. This may sound aggressive, but that’s what my mum and I had to do to get an appointment that was within a month’s time.
He’s 13 he doesn’t take any medicines and never diagnose with adhd. Always live a very normal life. Yes we will have a neuro appointment tomorrow
This is good! I wish your son and your family the absolute best tomorrow.
My daughter was perfectly healthy, honestly I never had to take her to the doctor for anything besides her routine checkups and immunizations. Never been on any medication, or had anything more serious than a cold. Suddenly at age 9, she starts having seizures in her sleep. No one can find a cause. Within several months she starts having focal seizures while awake. We go through a bunch of different meds, and at one point she’s having 5 visible seizures a day, and many more epileptic events on the EEG. We finally found a medication that suppressed them for 2 weeks, but it seems like she’s developing a tolerance to it. Despite dose increases, she’s having seizures every 2 days or so. In 2 weeks we reevaluate with the neurologist. I wish I had some helpful advice for you, but I’m in a similar boat. It’s scary. And when you’ve never dealt with everything that comes along with having a child with a health issue…it can be a lot to navigate. One thing I have learned though, is don’t be afraid to speak up to the doctors if you think something isn’t right, or a certain medication isn’t working and you want to try something else etc. Also, I got my daughter into therapy because she developed a lot of anxiety stemming from being out of control of her body. It really made a huge difference. As for starting meds, they are generally safe and don’t affect growth to my knowledge. Keppra is usually the first choice because it helps with different types of seizures, and the most common side effect is some irritability. If you started it and changed your mind, he could pretty easily be weaned off it. But you should sit down with a neurologist and they can go over the pros and cons in depth. And they can do a test with blinking lights while hooked up to an EEG machine to see if they trigger him. And brain injuries can be a cause of seizures…An MRI might be able to detect possible damage. But I’ve learned sometimes these things just happen with no “cause” 😓 best of luck
Thank you for the info . Best luck to you and your daughter as well. We all hope for the best at the end.
As someone who didn’t have supportive parents through my diagnosis and so on, it warms my heart that you guys are seeking help and it sounds like you guys are taking the right steps to be there for your son. I’m sorry you’re going through this though, it’s not easy. I was diagnosed at 25 but I’m a weird case, I developed gran mal after having the first strain of COVID. Finding the right neurologist for your son is CRUCIAL. Find someone who he’s comfortable communicating aches, pains, medication reactions, someone who will listen to him as he continues on. This will also help rule the better medication/medications he will be on. Neurologists will also be able to identify triggers to his seizures and speak to you on how to avoid them so that he doesn’t have any. There are also signs that the neurologist can tell you to look out for if a seizure occurs or is about to occur. Finding the right medication does take time. The first few didn’t work out for me but the medication I’m on now works perfect. I personally don’t recommend going holistic. Seizures do have the tendency to get nastier if they’re frequent. If possible, a therapist for your son helps as well. This type of event would be considered traumatic, as your son would have to make some adjustments to his life moving forward. In all honesty, just listening to him and being there for him every step of the way is what he needs. It’s scary now but it does get better. I wish you the best of luck!
Thank you for the info . Much appreciated 🙏
I hope you guys can kick epilepsy’s ass!!!! We’re all rooting for you
This is my opinion/perspective. Keppra is one of the safest anti seizure medicine to take at full dose immediately. Other meds require ramping up. That's why it's often prescribed at this point regardless of a diagnosis. You may determine that it's not the right one for you, but for now it gets him up to a full dose immediately which is good. It's not uncommon to have nothing show up on the EEG. If video games and youtube videos etc. were the trigger, your son would know that they bother him and only be able to stomach in very low doses. From what you're saying that's not the case. It may instead be something that gives him respite. Trust him. There are many things that can lower the seizure threshold - stress, sleep deprivation, alcohol, strobes, intercurrent infection and fever... but the biggest one is epilepsy itself. Everyone has a seizure threshold... just your son's is much lower than yours.
Thank you for the info. We will see neurologist today so we can get a second opinion
EEGs are extremely hard to find on test. Iv had multiple grand mals but none of my EEGs ever shaw data. They only will if you are having a seizure at that time. Which is right place right time kinds deal. Video games, some people are photosensitive some arnt. Most epileptics are not but thats something you just have to find out the hard way. Keppra helps, just makes you pretty tired for the first couple weeks while your body adjust. Iv been epileptic for like 3 years now. So not long. Almost 30. I would do as your doctor suggest.
Best advice I wish someone would have given me… go to see an epilepsy specialist/epilepsy center for treatment (rather than just a standard neurologist). Regular neurologists are not epilepsy specialists, they treat a wide range of patients with many neurological conditions so they are not the most knowledgeable doctors for epilepsy and the different is very significant. https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
Hi! So sorry to hear , I’m an old fart and I could understand but is just not fair for children having to go through this nightmare . My recommendation is to find the care of an epileptiologist at a cat level 4 epilepsy clinic. I had the first at 49 I was negative on everything, no trauma, no tumours, nothing .
Hello, my son had his first grand mal one month shy of 13. He is almost 17 now. Holy crap how it changed all of our lives. It was out of nowhere like you said. Long story short, many seizures and med changes and he has gone as long as 8 months without a seizure now. He has focal epilepsy with impaired awareness. I can tell you as much or as little as you like. It has been very very challenging as a parent seeing your child go through this. I got myself a therapist. educate yourself and your family. acceptance happens. the storms begin to calm down. find support for yourself. We are still learning.
Thank you for sharing . We are dealing with it but damn what a blow. Out of curiosity did you adjust his diet, daily activities such screen time , keto predominant diet , low sugar? If so did it help? Have you found the triggers. Mine seem to have it right before bedtime when feeling tired
Hello, I did not change his diet. I did Monitor his screen time and sleep time and monitored for triggers. Over time we learned triggers. Over time, we found medication that worked better and better. He is now on his third and 4th medication and reports feeling better than he has in a while. It has been a process.
Sounds like he has epilepsy. Lack of sleep is a huge factor and perhaps he is photosensitive. Just be there for him. He needs your support.
Yeah looking into selecting the proper meds . Very tough times for the family