Not all epilepsy is genetic. I didn't inherit mine, and I have two adult children who are seizure free. Also, epilepsy can happen to anyone. Two nonepileptic parents can still have a child with epilepsy.
Same.
I have thought about this, and while I am concerned about passing it on to my children, I, as a guy, am mainly concerned with being the only one around, or holding a baby, and having a seizure. Those two things make me very nervous.
Yes but they were obviously discussing genetic variants.
Edit: what you're saying is the case with myself btw but it could be undiagnosed further back when they didnt know what it was (ex my great granma on one side was "crazy" and dementia runs in the other line of family so a lot of "weak brains" in family)
I wont be risking it, personally
100% agree and even if they are, there are so many things you can develop in teen yrs or early adulthood. I didn’t get diagnosed with bipolar disorder until I was in my early 20s and my family thought I was their “normal child” turns out something’s aren’t super noticeable until you get older.
I think if everyone sat down and went through the entirety of both sides families medical histories people would probably never have children again.
Preparing for downvotes, but that's very selfish. There are plenty of older kids that need to be adopted instead of stuck in an orphanage.
I can't imagine seeing my parent violently writhing on the floor gasping for breathe, that's so fucked up. I would never want to have a child witness that throughout their childhood. It would be emotionally traumatizing for them, a kid in school way back killed himself seeing his father have them multiple times a week and being carted off by an ambulance.
I totally agree with everyone else here that the chance is low and to consult doctors, but if the guy your dating is persistent on that, date someone else! I also see where he’s coming from, but that’s a rather rude thing to say to someone you know is epileptic/disabled.
Completely understand how you feel, I have the same feelings myself 34(m). Wife and I have had alot of conversations regarding this.
I have spoke to a genetics councilor as well, they said it's about 5 ish % higher chance we would have an epileptic child vs two non epileptic people.
I'd love to be a father one day and I know my wife would be an amazing mother, she is very understanding and supportive. We are debating adopting vs being dinks(double income no kids) and travelling and focusing on being supportive aunt and uncle to our neices and nephew.
I really struggle about the guilt I'd face if my child had epilepsy and knowing it was likely from me, I have jme as well and it controlled last few years but first several years were not fun to say the least.
The other worry is the lack of sleep and sleep patterns that come with being a parent or ever dropping my child having a seizure or when I get myoclonic jerks.
Alot to think about for sure, I wish you nothing but the best in whatever you chose, were still weighing our options.
My husband has been really worried about that whenever we’re in the newborn stage (two kids). Lack of sleep, stress, and poor diet are major triggers for me… and they all inherently come with having a newborn.
Once I switched to Lamictal from Keppra I haven’t had a seizure regardless of how brutal parenting can be on the body a lot of the time.
Not medical advice, not telling you what to do, just thought I’d share my personal experience in case it helps
I love the idea of being involved aunt/uncle. My niece and nephews are in their early 20s and I am just getting involved in their lives in a meaningful way. I don't have kids of my own, and I'm happy to do whatever I can to support them <3
A loving family looks so many different ways!
I have TLE and have a child, and am trying to conceive a second.
I wasn't diagnosed when I had my daughter 6 years ago. I was symptomatic, but had been told since the age of 11 that my odd episodes of deja vu & terror were panic attacks.
My epileptologist has confirmed that, based on my family history, seizure types, MRI and EEGs, the chance of my epilepsy being hereditary is very low.
If that wasn't the case, or if my epilepsy were more severe (it's currently controlled by meds and previously was 99% focal aware seizures triggered by my menstrual cycle) it would give me pause.
Ultimately I feel that although epilepsy makes life harder, the type of epilepsy I have is not so severe that I would say my life isn't worth living. I haven't ever wished I'd never been born and I'd hope that my daughter (or her sibling if we are ever lucky enough to have another) would feel the same way if she ended up with epilepsy too.
I'd also say that when I was younger I never saw myself as a natural mother and wasn't sure I wanted kids, but my little girl is the most spectacular thing that has ever happened to me. Our relationship is so close and I feel so incredibly lucky to be the one she calls mama.
Well, considering I’m an epileptic and extremely happy to be alive and have so much gratitude that I get to experience the mystery of the universe, I wouldn’t consider my parents selfish at all if either had epilepsy.
Not gonna lie, that guy sounds like a selfish douchebag lol ‘epileptics shouldn’t have kids.’ why not throw all disabled people in concentration camps so we can’t breed. My god, that’s the extreme of his shitty ass logic. It is your right and solely you and your partners choice to have kids or not. In my humble opinion it is literally no one else’s business. Do you like being alive even with epilepsy? That’s probably a good question to ask to see how you feel about having a child.
Not my wife, or family or my friends have ever mentioned the thought of it being selfish for wanting a family even though I have epilepsy. They are excited for my wife and I. I consider it ignorant and a slight against anyone who has a disability for someone to think it is selfish for someone who is disabled to have a child.
1000% this is eugenic logic. Even if you have the most genetically perfect child, there's still 1000 and 1 things you can do to fuck up the kid's health, physically, psychologically and mentally. Health is _never_ guaranteed, life is random. Your perfect kid could get run down by a bus and become disabled any day of the week. They might drink horribly polluted water and get poisoned. It's not about bringing the most genetically advanced kid into existence, it's about creating a society where every kid, no matter how they came out, can thrive. Worry less about the generic composition in your body going into the kid, and do more about the world your kid is going to live in.
If my epilepsy was genetic, I wouldn't have a child. If someone else had epilepsy that was genetic and chose to have a child, I don't judge their choice. Unless they come whining about their kid being epileptic. You rolled that dice.
Genetic counseling exists. People with all kinds of genetic issues can get that counseling with their partner to see what kind of outcomes they might expect.
There’s always a chance of having a child with epilepsy even when you’re not epileptic. 1 in 26 people will develop epilepsy at some point in their lives.
There’s a harmful misconception that epilepsy is primarily an inherited condition. Until somewhat recently, people with epilepsy weren’t allowed to get married in many states because of that misconception, and several states also allowed forced sterilization. While it’s true that first degree relatives of someone with epilepsy have a higher risk of developing it, the genetics are super complex. There isn’t one “epilepsy gene.” You can have one of the hundreds of genes implicated in epilepsy and never develop it, and having that gene doesn’t mean it was inherited; it could be a spontaneous mutation. Also, as others have said, it’s entirely possible to have epilepsy that doesn’t have a genetic basis at all. Ultimately, whether or not to have children is an intensely personal decision, but calling someone with epilepsy selfish for wanting children is unreasonable.
My neurologist told me it's 50/50. I don't want kids for various reasons but knowing what my family dealt with when I was diagnosed and how absolutely miserable my epilepsy made me when it wasn't under control, it's a hard no for me. I really wouldn't want to risk the slightest chance passing it on to anyone but I know a lot of people don't feel the same. At the end of the day, it's your choice.
JME is genetically inherited on the maternal side. I’m never having children due to this reason. There’s a chance your hypothetical children will inherit it, but not 100%. Just makes it a lot more likely. My mother had epilepsy, and had 4 children. I was lucky number 4 who got epilepsy.
Just my opinion, but I don’t want any kid to suffer the kind of shit I did as a teen. Not trying to scare you, but it is what it is sometimes. I think adoption is a wonderful option. Either way, you do what’s right for your family 🫶🏻
I very much am & will always be childfree but when it came to how I felt with my epilepsy & having kids, I didn't really think about whether they would inherit it since I'm the only one in my family with epilepsy. The one thing I kept coming back to was that I can't, in good conscience, put a child through the trauma of seeing their mother have a seizure. Or what about if I can't care for them properly because I'm out of it? That sort of thing.
I wouldn't say it's selfish, though, not at all. There's absolutely nothing wrong with wanting the experience of pregnancy and birth and raising a little human. But doing it safely and in a way that keeps you *and* your little human's best interests, safety, and security as a priority is what matters. Your feelings are valid and they matter, and I'm sorry he said such a hurtful thing to you.
So I have genetic epilepsy and I hope this story can illuminate some things. I was having a discussion in class about a book, Oryx and Crake. The discussion came up about being able to choose/ design your babies dna(basically eugenics). Someone in class brought up how that could be a good thing because we could root out things like diabetes and heart disease. Now I've never had controlled seizures, although I'm on my way, but I ended up speaking about who I used to be and who I am now. How much my epilepsy was a struggle but also how it changed me for the better. I've learned and grown as a person from my struggle, and if anyone asked me if I could change it, would I? I wouldn't. With all the scars and injuries, I also have no aura, I would still never change it because it's made me who I am, and I'm proud of who I've become. It's something to consider that sometimes, when we struggle, it can have a positive impact, and trying to avoid it because it's more difficult can also be taking an opportunity away from someone as well. Also, does my struggle make my life worth less? Am I considered damaged? Am I the toy in the damaged box that gets a clearance tag slapped on it? Maybe, but it doesn't make me any less fun to play with.
I think you’re super valid to have hurt feelings about him saying that. It’s not selfish to want to experience having/carrying your own child even if there’s a chance that child could have epilepsy (or any other ailment for that matter). Not all epilepsy is genetic. However, if your epilepsy is genetic that doesn’t automatically mean your child will have it. Genes are a crazy thing and just because you have a specific gene doesn’t mean it will “turn on.” You could go your entire life having the “epilepsy gene” and not have epilepsy or any seizures.
Alsooooo, is he implying that someone with epilepsy is not worth having a life? Having epilepsy, while a struggle and a terrible thing, doesn’t make us any else of a person. If your child were to have it, it would still be your child and you would still love it. He’s kinda giving red flags. What if your child ends up having some other ailment that can’t be predicted? Will he love that child less?
I don’t think so. I didn’t inherit mine and even though I’m scared that my hypothetical children might potentially inherit it from me, there’s no guarantee that they will. Anyone with a brain can have a seizure, so even two non-epileptic parents can have a child with epilepsy or seizures. I don’t think it’s selfish to want to have a baby.
No history of epilepsy in mine or my wife’s family , my son has epilepsy, my daughter doesn’t. 🤷
I also know someone who’s mom had it, she and her sibling have it and her kid now has it.
I also know people who adopted kids who ended up with severe health issues.
You gotta be ready for it all if you plan on having kids.
Epilepsy is present in both my partner’s and my family. We don’t wanna have kids (unrelated), but we’ve had this conversation and we have different opinions. I (the one w epilepsy) wouldn’t want my child to have epilepsy, because (a) I don’t think I could handle an infant/baby w seizures while I have stress-triggered seizures and (b) I know it’s controversial but I already struggle so much, I can’t imagine being a child w this disorder and not understanding what is happening. As an adult, I sometimes have seizures that take me hours, even days to come back from, I cannot imagine what it must be like for a child. I know it’s an unpopular/controversial opinion, so I’ll see myself out lol
I am a parent of a child who has epilepsy. We found out that hers is genetic, SCN1A gene mutation. As a parent of a child who already has epilepsy that has been very difficult to manage, we are in the process of getting testing for ourselves to see if it is inherited or de novo. If we found that the gene was inherited, there’s no way I would have any more children.
Supposedly, it’s a 50-50 chance that the gene is passed down if you have a mutation. However, we have a second child who has had seizures as well. I would never change having my daughter, but with the knowledge I have now would not take the risk with another child.
Everyone’s opinions is going to differ based on their personal experience with epilepsy. For us, it has stolen a huge part of my daughter’s life. she has stated that she didn’t think she wanted to have children because of it. I told her that was completely her right whatever she decided.
it’s interesting even for people who have SCN1A or other genetic mutations. One person with the mutation might have only had one seizure in their lifetime and another person with intractable epilepsy. It’s really a gamble.
1 in 26 of all people will experience it at some point in their lives regardless of its in your family genetics or not. High number, right? No one should ever have kids with this logic.
I didn’t inherit my epilepsy. You can absolutely have a child and it is not selfish at all. If your child did Inherit your epilepsy then you’ll be the best mother for the job.
Personally, I think you’re boyfriend is not a good fit. My boyfriend has done extensive research on passing epilepsy down to children and we’ve even talked to his parents about it. I have JME too and my neurologist told me having a child with epilepsy is very low. If what you want is having a child, then you should do it (with guidance from your doctors of course). If you’re in a very serious relationship with your boyfriend, ask him to independently do some research. If he still dismisses your feelings, maybe think of moving on.
We’re not in a serious relationship yet, we’re just dating. We’ve gotten really close really fast though which is why we had the conversation. We’re not rushing to have kids, he does need to do his research though.
Lets say that its selfish, remember that every family has a disease. If you think like that, no one will have children anymore.
Actually besides diseases, is it selfish to even bring kids in a world where suffering is guaranteed?
And we can keep on going down the rabbithole, but thats how children think. Adults dont think like that, we understand the risks and hope for the best as there is a great chance your children wont have epilepsy.
First off screw him for making you feel that way. Not all epilepsy is genetic mine isn’t but somehow my daughter has epilepsy too.. benign tumor in her brain. Children are resilient all they need is loving parents.
If folk think that way, then essentially anyone having a genetic condition would be classed as selfish and I don't believe that's the case. I think people who pop out kids and neglect or abuse them are selfish for having kids. Anyone who loves and cares for their kids isn't whether they may be likely to inherit a condition or not. Not all Epilepsy is genetic either. I've got TLE which is getting worse as I age but no immediate family members have it. My dad had grand mals due to a growth spurt in his youth but nothing else since then. I've got a 14 and a 6yr old and none show any symptoms as of yet. My 6yr old is ASD/PDA (diagnosed) and potentially ADHD which I have.
I wouldn’t wish this upon my worst enemy, let alone someone I’m supposed to love. I’ve seen percentages of it being genetic mentioned and it’s false-it’s actually 30-40%. Of course genetic testing can be done to know for sure.
Tbh, I think comments like his start veering toward eugenics territory.
Epileptic people are and should be allowed to have children, and as you said, it's not all genetics with epilepsy.
My epilepsy does come from a genetic condition (50% of cases it's genetic and 50% is a random mutation) and if my partner and I decided to have kids, we would do a genetic screening for it and probably would choose to terminate as a personal choice. But it's a condition that can range from mild (me) to absolutely debilitating with no prediction of the severity.
I literally am in the same situation as you and, in my case (not saying it’s a universal truth), I do think it is. I was adopted as a baby girl, and thus don’t have any background on my genetics (these kinds of tests are illegal in my country). I just know I’m epileptic, autistic and heavily depressed. I’ve always wanted a real and biological family and to carry my children. But risking this life of just pain for them ? Having them knowing I knew what they could go through and went on with it anyway ? I just can’t. All of these things can be transmitted, if not to them, to their own children. And they also could be way worse for them than they are for me. Also, the fact that I could never trust myself with them or during the pregnancy, since I could have a seizure anytime, frightens me. I’m completely against adoption, though, so it seems like there’s no solution. I don’t want to take chances like that. They would be my children, I would want nothing but the best for them, and not bet on their health like it’s nothing. I obviously know some stuff could appear « just like that », but knowing it and doing it is totally different.
as an epileptic, I have always questioned whether or not I should have children...
Beyond the decision of whether to become a parent or not, being epileptic is a factor that (in my opinion) makes it more difficult to contemplate that decision:
First of all, I've had enough crises in front of my family, but I can't get used to their worried/pity looks when going through another crisis again. I take into account the fact that it is a constant concern for them. And personally it bothers me a lot.
I don't know if I could stand receiving that look from my own son. The last thing I would like is to feel a burden to him too.
Secondly, I know that the percentage of him ending up inheriting my illness is minimal (although it is not zero) and I know that it is almost impossible for it to happen, but I am terrified of the fact that he inherited his illness and came to blame me for it.
I know it wouldn't be completely my fault, but if I had a child, I would like him to have a normal life, without the discomfort that comes with having this disease.
I would get a genetic test done and then talk to a geneticist to see the likely hood of your potential future children having epilepsy. Then make a decision
I’m the only one in my family with epilepsy. From what I understand it usually isn’t genetic. I have two kids: zero evidence of epilepsy with them (and of course I’m always on high alert for any signs at all).
The hardest part about having kids when you have epilepsy is knowing that you may have a seizure while caring for them. This is why I stick with meds even though I hate the side effects.
It terrifies me to think about if I have a seizure in public, would my kids be alright? At home - they still need supervision. In public - there are a lot of sketchy people out there who wouldn’t have our safety in mind at all.
What I would really consider: Are your seizures controlled? How long do you go between seizures? Are you on meds that are safe for pregnancy? Do the meds safe for pregnancy work for you (usually Keppra or Lamictal)? Can you insure that your children won’t have to experience you having a seizure and being incapacitated in times that you’re their only caregiver?
These are the big ones
I inherited mine. My mom and her sister both have it. So I guess my TC epilepsy genes come from that side. It's a real possibility. You can never be sure. I'm sure there are some tests that can let you know. I keep thinking the same thing if I'm being honest. Why put someone through a disability as this? Where you might have to have meds for the rest of your life? Or have seizures everyday? But that's my opinion. You can be DINKS. Or you can adopt like you said. But I can see where you're coming from.
You can have an egg extracted that does not have the mutation. I cant remember what its called exactly. My son has epilepsy, his mothers genetics. His neuro was explaining this to us. Kinda hurt..because I couldn’t stop thinking about my son, surely he wouldn’t have this disease…but I still wouldn’t go back and “do it differently”
Take advantage of technology.
I’m not sure that mine is inherited. I had a great grandfather with seizures, but I think they started after a head injury.
I was extremely worried and anxious about it. I’ve got two kids and I worry about it every day but so far there’s no sign of it.
I think it is. Yes, as someone argue below, they could develop something else anyway, but this is a _known_ risk factor for a pretty terrible disease you shouldn't wish on anyone, especially not your own child.
I guess the only pro would be the experience to help handling it
I mean, yeah, kinda. There's no guarantee of a 100% healthy child for anyone, but I woulsn't want to raise chances. Ask your doctor, though.
That is *such* an asshole way to put it btw. Where did you find this guy and can you put him back?
I'm not gonna have kids but I also have JME and am literally the only person in my family to have it lol. It's not as genetic as you think! Sounds stupid but yeah lol
Honestly, I'd talk to doctors before considering the option.
You should know if there's a genetic component or not, and you're not finding out without some sort of genetic tests.
I have epilepsy, and take tonic clonic seizures.
My neurologist first thought that my epilepsy was genetic, but then started leaning towards the fact that my mum had a semi-difficult birth & they had to use forceps to bring me out (mainly due to the forceps, it was interesting to hear that).
However, my parents don’t have epilepsy, and they couldn’t think of anybody at all in the extended family that had epilepsy or even took seizures.
I also know lots of people with epilepsy where their parents don’t have it.
Yeah, sure, sometimes it can be genetic, there’s no denying that. HOWEVER, it isn’t selfish to have a child just because they MIGHT have epilepsy. It’s the equivalent of saying “I’m not having a child because I have X and they might inherit it.”
Personally, if my partner said that to me, my feelings would also be hurt.
I have went off on a tangent. As other commenters have said, your feelings are valid and genetic testing is always available.
I did inherit epilepsy. My dad has three sisters, two of which have epilepsy. He does not. Out of the seven grandchildren, I am the only one who is epileptic. By that logic, my sister shouldn’t have kids because hers might have epilepsy. It’s the luck of the draw.
I have had a conversation with my partner and we do still want kids. There’s no guarantee either way that they will or won’t have epilepsy and, if they do, I know what to look for
Hi there. I also have JME (F 27) and I have to healthy beautiful sons (5yr old and 4month old) I got both genetic tested recently to see the chances of them having it also and I’m blessed to say they do not. It isn’t selfish to want something that comes natural to us. And the chances of our children getting it are very low.
Would it be selfish to have a child if you were diagnosed with breast cancer? I believe that is a higher percentage of being passed along to your children
Out of maybe 50 people on my maternal side only two have epilepsy (myself and a cousin). My cousins appeared in childhood but mine didn't until my late 30s. Like others said, chances are low to pass it along but if you have some sort of genetic condition where epilepsy is symptom, that may be different.
If you can control it with medication, I say no. Everyone is risking something. Even non epileptics can have a seizure. Raising another human will always be a risk. And you might be a better parent than 99% of people without epilepsy.
Everyone is allowed their opinion but my personal experience is my mom and a few other family members have epilepsy. We both got diagnosed in our 20s. We don’t think it’s genetic, but there is a small sliver. I wanted to be child free as is but that kind of sealed it.
I have genetic epilepsy and they tested me for it. To feel assured you could do that but I am still have children. It is not selfish because you never know. Just consult your neurologist and doctors to make it safe
I have genetic epilepsy. However I got it from my grandfather on my mother's side. So it skipped generations. It can stop with me or not. Never no. I have a 9 year old son and I don't think having him was selfish at all.
We just found out my son has a mutated gene that gives a 50% chance of his kid receiving the mutated gene. He's 10. I'm not about to tell him he can never have kids.
If he wants kids, he will have them. And he will do the same thing we are if they receive the mutated gene. Treat the epilepsy and hopefully with the help of modern medicine the kid will grow up to live a full and happy life, like he is.
Neither my husband or I have epilepsy and both our children have it. My youngest out grew hers (so far) but my oldest outgrew hers at 12 but started having tonic clonic seizures at 17.
There are no guarantees of anything.
I have MS and was scared to have children because of that. But I didn’t let it stop me. Sure, I worry so much that I have passed it down to my girls. But I’m still so glad I didn’t not have them. I feel horrible that some how my genes and their dads genes clearly mixed in a way to give them epilepsy. It sucks. But I still wouldn’t wish I didn’t have kids. I love my girls so much. Can’t imagine them not in my world
Mine's probably inherited, it skipped a whole generation. My great aunt and great uncle have it and I had a seizure, but no one else, not my grandma, her four kids, not my cousins or siblings.
Most people with epilepsy have not inherited it. The guy you are dating has managed to live with it. In the unlikely event that his children have it, they will have a great life too.
My husbands family has Epilepsy from inheritance, every first born on his dads side gets it, my oldest daughter has it, but his dads fmily always grew out of it when they hit puberty, except for my husband his came back at puberty.
But you never know with the future, yall could take a type of counseling to see if it could help yalls decision.
Has your boyfriend seen others have seizures? With him having it and knowing how he feels about it,,, there is a good chance it could fk him up a lot worse mentally. Because in his mind, it came from him. In his mind his child could suffer just like him and its never good. His feeling about it is valid,
That being said, it is different when you see your spouse having seizers vs seeing your baby kiddo have them. It is a different hurt in the heart, the anxiety is real but you dont want to smother it eith protection either because you will want them to be close to being normal.
There is always that chance they will not have it. Its a true deep conversation between the both of yall.
He saw me have a seizure when I was in his own home this past weekend which, I believe has to do with his reasoning for not wanting this to happen to a child of his own. He saw his brother’s fiancé have one a few years ago as well. He also had one maybe 10 years ago, but that was drug induced.
Oh i read that so wrong im sorry! I thought he had it.
But regardless it isnt selfish at all. My husband is epileptic and we have 5 kiddos.
I mean, only advise i can give as an outsider is that will he be okay on your bad days?
If he is scared of you having a seizure while holding the baby, just make sure you are sitting somewhere safe and look into a service dog, they are amazing and help tremendously.
Just talk to your Neurologist to make sure your medication is safe for baby, and let your obgyn know your condition and they will help too.
If your kid ends up having it too, well you will be able to help them understand and help them not freak out as much... but there is always that other chance fhey will be perfectly fine too.
I inherited my stutter. Idk if it has anything to do with my epilepsy, but it is the number one thing that I hate about myself. I blame my parents for it.
If I was a kid that knew I got epilepsy by inheriting it, I wouldn't like you as my parent.
I am under the camp of I *personally* don't want kids due to my epilepsy. However, I don't think epilepsy should stop folks from having kids. I've had a decent life despite the diagnosis at such a young age. Not all epilepsy is genetic, and even the types that are can have a low passing rate. Personally I'm more worried about my ability to care for a family, and the higher potential of leaving my wife alone with a child (or children). I understand that anything could happen to anyone, epilepsy or no, but the risk is certainly higher for me and it is something I like to consider.
I do not have epilepsy and my child has grand mal seizures that are intense; long, no conscious during it or even after it ends. Her entire body seizes up hard; she can’t breathe sometimes and her lips turn blue.
It’s fucking scary. She’s miserable and can’t lead a normal life because of how bad hers are.
I wouldn’t wish it on anyone.
I think if I KNEW there was a high chance I would t have another kid.
I don’t have them but people say they think my mom did- she was gone most of my childhood and died of cancer so I don’t know for sure.
That’s something deeply personal that you’ll just have to discuss with your doctor and prepare for.
Watching your own child go through that is so much different and so scary. It’s just heart breaking.
I didn’t know there was any risk when I had her- I don’t have them so it’s just one of those things.
You could have a child who doesn’t have them, and maybe their future child could have them.
Or not at all.
It’s not a sure thing I think it’s just increased odds but only certain types- talk to your doctor. Get a good picture of the odds and what not and make a choice. 🖤
It’s not all genetic 🖤🖤🖤
Using my reality as a talking point regarding the ethicality of this matter, especially because this is something I have recently also had to consider being that I have Ehlers-Danlos Syndrome, and highly suspect KEDS. Furthermore, being that I suspect the seizures I’ve been having have been temporal lobe seizures.
Frankly, I’m not sure if I should have more kids. But that’s exactly the problem. I’ve had two.
Henceforth I risk spreading my condition to any children I have both before and after. My two children who are alive are already at risk. I also happen to be a carrier for some very deadly genetic illnesses, which is to say that I could sire children who would inherit that gene or worse, potentially inherit the actual disease itself. Osteogenesis imperfecta. I’d be happy to provide a link, but by all means look it up.
But I would imagine that just makes it even more complicated because they are already alive. What should I say? “I shouldn’t have any more children because I could have really sick children” but then I have these two beautiful healthy children.
My takeaway personally is that it is good to know what is a possibility and even more so to have the preparations set for any sort of relevant contingency.
My older daughter is already showing signs of hypermobility, some serious ones at that. I also suspect, like myself, she might end up being narcoleptic. But she is *alive* _*now*_, so I just want to know what I can do to help her if she does end up with a diagnosis- or even if undiagnosed what she can do to prevent further injury or further worsen of her hypothetical conditions.
Ultimately, however, it is *YOUR* decision. And I’m sure you will do well by whatever that decision might be. Cheers!
I was told my seizures were caused by a high fever when I was 3. No one in my immediate family or extended family has epilepsy, normal MRI, normal EEG and clear genetic testing. The doctors gave me the green light to have kids and said there was absolutely no genetic link since it was caused by a traumatic brain injury. Guess what? It was genetic and now my kid has seizures and I hate myself. Don’t do it unless you can accept the guilt of possibly passing it on to a child. It doesn’t matter what the neurologist say and how low the chances are, it is not worth it. IMO Use donor egg or adopt. Also, if you think having epilepsy is difficult try watching your child have a seizure knowing it is all your fault. I fully expect my son to blame me for this later in life and I would not be surprised if I lose my child to SUDEP. Then there is the medical bills, your partner starts to wear down under the weight of 2 epileptics under one roof and the endless pill bottles/hospital stays/neurology appointments. My biggest regret in life is having a child of my own and if you think you are in the clear because of genetic testing, no one in the family has it, or your seizures are caused by car accident/injury think again. If you can handle an epileptic child, deal with the guilt while dealing with your own epilepsy and watch your kid suffer through seizures then do it. Assume you are in the 5% that will pass it on because you very well might be. Be prepared for that and be aware because I was definitely not.
I didn’t even know I was having seizures / had epilepsy until we were done having kids… We watch them close for signs and symptoms. JME subtypes can be recessive or dominate based on type, gender and race. Having kids is always a genetic gamble but you could get genetic testing done before hand to see if your’s is dominant or recessive.
Personally, My seizures are controlled, my life is full, I’m a nurse, I can drive. My kids are seizure free so far at 7 and 8, I wish I could say that for the ragging ADHD I passed to them. 😂 Good luck !
Something that I’ve looked into (for other genetic condition) is embryo adoption. You adopt an abandoned embryo and essentially have IVF.
I can’t answer this question bc I don’t have a great answer either
I have JME too. I haven’t met many people with it.
I don’t think it’s selfish because I myself want kids. However my boyfriend knows that he will need to do a lot in the first couple of months where sleep is a factor for seizures.
I am 7 weeks pregnant with my 2nd child. I didn’t get diagnosed with epilepsy until 5 months after I had my first child. And as far as I know, none of my family has epilepsy. There’s a lot of heart conditions that run in my family though. And my husband and I decided that we were going to have one more kid before we decide to not have anymore because it’s a lot of stress on your body. I completely understand wanting to actually experience labor and birthing a child. I’m sure they will just do extra appointments to make sure everything is going well! My neurologist actually upped my med dosages to try to prevent breakthrough seizures as much as possible. I’m sorry, this comment probably wasn’t helpful. I just want you to know that I was nervous about having a child when being diagnosed with epilepsy, but I’m glad I get one more chance to go through it before deciding to not have anymore kids.
My wife and I are not having kids. Now we knew it wasn’t really something either of us wanted 100% but we’ve also thought of how much of a strain one parent having a seizure disorder (me) would be on the other parent in terms of stress and anxiety. My triggers are lack of sleep, lack of hydration, anxiety, and some past unresolved trauma. Psychosomatic. So when we first told our friends and family we really didn’t mention the genes possibly being passed down. It was that kids are a lot of work in general. So, I as a partner am going to expect my wife to carry this baby for 9 months and then for the next 1 to 2 years do all the middle of the night feedings and changes? Neither of us would feel comfortable with me waking up on 3 hours of sleep to hold the baby and feed it with the possibility of a seizure happening. She wouldn’t be able to sleep knowing that and I’d have that thought every time. Just would cause a lot of extra stress for the both of us that’s not needed. And since neither of us really were set on wanting kids this helped us solidify our decision and I think our community needs to keep this perspective top of mind.
I have epilepsy and love my life; I do not wish that i did not have it, because it made me stronger on my journey and brought me to places i felt i needed to go to. It changed the course of my life for the better. If my parents had the mentality to not have kids i wouldn’t experience this beautiful life. Don’t forget that Epilepsy is sacred in many cultures- i think its important to step out of the mental constructs of today’s society.
CBD OIL (Nuleaf natural is the brand I trust and use) you’re very welcome ♥️ keeps my nervous system under control with little no side effects #naturalremedies
The chance is pretty low. I want to say 5% but don't quote me on that. I have a healthy child and and I know others whose kids are fine. Boyfriend should check his facts first.
I had to take certain precautions, such as don't bath my baby when on my own, and formula was recommended over breastfeeding so I could get a better night's sleep. But as long as you're sensible, there shouldn't be an issue.
So I'll open with a saying my mother and I always say. Having a child is a selfish act. Nobody asked the child of they wanted to be, but the choice in itself is yours.
On the subject of having a child while risking the chance (low chance, even lower if the child is a girl) I fully understand. My wife and I had this very conversation over 13 years of marriage before finally choosing we were "ready" and went through with trying. I myself am a religious man so I prayed, I didn't know my wife too was praying and neither of us knew her mother was as well praying. Lots of prayers, and we felt ready.
You reach a point in your life where the choice is now or never and you have to choose.
Speaking from experience on having my own, being the man who got to deliver my daughter while both my mom and her mom were holding my wife's hands. There are no words I know in the English language that can describe the feeling of fearful happy sadness.
I tell people that it is something like a food or a drink that you have never had, you don't know what you're missing until you try it. Unlike those foods and drinks, you have to be committed to it.
On the other hand, adopting is a way of finding your little one that helps you help them. My brother had to put his daughter up because he and the mother of were just kids themselves, and to this day he still crys when nobody is looking. But thankfully we know the person who adopted and they share from time to time. They even have had a few more kids since then if their own. And they have been so happy (so I am told) for not only their adopted and bot adopted but also because they had kids at all.
Yes there are so many out there who shouldn't be allowed to reproduce, and there are those of us who wish to but fear, not for ourselves but for the child. But until you take that step, you'll never know.
And I will admit it, that itnis tough. I have woke up from the floor and my daughter is sitting with me telling me "you're okay daddy" while I regain my consciousness. And I have been taken to the hospital while she waits at hone with gma. But in the end, she loves me. She always makes sure I know she loves me, and that feeling alone is worth having a hundred seizures in one day, the headache and body ache and confusion and endless feeling of falling while sitting still. I would endure it all, just to be able to hold my baby girl. And that, I never knew until I held her for the very first time.
So, ask yourselves, all your questions, but remember that in the end, it's up to you to choose. I hope you make a good choice for you as a couple and you are happy every morning after.
...
Sorry for being long winded there.
Your bf just casually said he agrees with eugenics. I hate to be that Reddit dork but please start looking for other red flags, because that one is blaring.
A lot of people arent aware of this but epilepsy is common in people with ASD and I have autism so that's (likely) why I have mine, it's not always genetic
Having kids was the most eye opening experience for me, I learned so much more about the world and what makes people tick. I highly recommend it. Your kids will be strong, healthy, with all 20 digits and smart as a whip I’m sure.
Hey, hi there. First of all sorry that your bf responded that way, that sucks and it's not selfish at all, absolutely no one would hold you accountable. Secondly, JME isn't that big of a deal, i have it too but im wondering is it really genetic? Thirdly, the funny(shitty) thing about life is you may very well have a child with no epilepsy, however your bf might, or other defects etc. you fan never know and it just sounds like a cop out from your bf. I think you never know how you got it right? Also, i dont often meet or get to interact with people with JME. Do you mind if i ask what pills youre on? Is it generalized?
I take Zonisamide and Lamotrogine. My birth parents didn’t have epilepsy, but my twin brother and I both developed it when we were around 15-16. We’re 27 now. I have jme while my brother just has grand mal seizures when he doesn’t take his meds. I’m not sure if mine is generalized or not.
If it’s genetic, I wouldn’t have a child. I’ve worked in children’s hospitals for 36 years, and went through being bullied as a child due to just falling asleep in class from my meds. Yes, I think it’s selfish if it’s genetic…as well as any other genetic disease people know they’re passing on to their children. It happens all of the time.
Not all epilepsy is genetic. I didn't inherit mine, and I have two adult children who are seizure free. Also, epilepsy can happen to anyone. Two nonepileptic parents can still have a child with epilepsy.
That's my case, I'm the only one in my family who has epilepsy.
Same. I have thought about this, and while I am concerned about passing it on to my children, I, as a guy, am mainly concerned with being the only one around, or holding a baby, and having a seizure. Those two things make me very nervous.
Me too..
Same! Neither one of my parents have epilepsy or any history of seizures and I was the only one out of my siblings to have epilepsy.
Yes but they were obviously discussing genetic variants. Edit: what you're saying is the case with myself btw but it could be undiagnosed further back when they didnt know what it was (ex my great granma on one side was "crazy" and dementia runs in the other line of family so a lot of "weak brains" in family) I wont be risking it, personally
Both my parents are epileptic, and so am I. For whatever it's worth, I don't think it was wrong for them to have me. I like living, epilepsy or no!
There's a lot of people with really shit diseases who choose to have children and hope for the best. No child will ever be 100% healthy
100% agree and even if they are, there are so many things you can develop in teen yrs or early adulthood. I didn’t get diagnosed with bipolar disorder until I was in my early 20s and my family thought I was their “normal child” turns out something’s aren’t super noticeable until you get older. I think if everyone sat down and went through the entirety of both sides families medical histories people would probably never have children again.
Exactly!
Preparing for downvotes, but that's very selfish. There are plenty of older kids that need to be adopted instead of stuck in an orphanage. I can't imagine seeing my parent violently writhing on the floor gasping for breathe, that's so fucked up. I would never want to have a child witness that throughout their childhood. It would be emotionally traumatizing for them, a kid in school way back killed himself seeing his father have them multiple times a week and being carted off by an ambulance.
So the adopted kids can see you have a seizure as long as it's not your biological kid because that's worse?
I see where you're coming from but the average person with epilepsy is not having multiple GTCs a week
I totally agree with everyone else here that the chance is low and to consult doctors, but if the guy your dating is persistent on that, date someone else! I also see where he’s coming from, but that’s a rather rude thing to say to someone you know is epileptic/disabled.
Yep. Red flag especially if OP seems to want kids one day
Completely understand how you feel, I have the same feelings myself 34(m). Wife and I have had alot of conversations regarding this. I have spoke to a genetics councilor as well, they said it's about 5 ish % higher chance we would have an epileptic child vs two non epileptic people. I'd love to be a father one day and I know my wife would be an amazing mother, she is very understanding and supportive. We are debating adopting vs being dinks(double income no kids) and travelling and focusing on being supportive aunt and uncle to our neices and nephew. I really struggle about the guilt I'd face if my child had epilepsy and knowing it was likely from me, I have jme as well and it controlled last few years but first several years were not fun to say the least. The other worry is the lack of sleep and sleep patterns that come with being a parent or ever dropping my child having a seizure or when I get myoclonic jerks. Alot to think about for sure, I wish you nothing but the best in whatever you chose, were still weighing our options.
My husband has been really worried about that whenever we’re in the newborn stage (two kids). Lack of sleep, stress, and poor diet are major triggers for me… and they all inherently come with having a newborn. Once I switched to Lamictal from Keppra I haven’t had a seizure regardless of how brutal parenting can be on the body a lot of the time. Not medical advice, not telling you what to do, just thought I’d share my personal experience in case it helps
I went off meds for my pregnancy. I had no seizures. It's the longest I've gone without seizures. My body loved being pregnant
I love the idea of being involved aunt/uncle. My niece and nephews are in their early 20s and I am just getting involved in their lives in a meaningful way. I don't have kids of my own, and I'm happy to do whatever I can to support them <3 A loving family looks so many different ways!
I have TLE and have a child, and am trying to conceive a second. I wasn't diagnosed when I had my daughter 6 years ago. I was symptomatic, but had been told since the age of 11 that my odd episodes of deja vu & terror were panic attacks. My epileptologist has confirmed that, based on my family history, seizure types, MRI and EEGs, the chance of my epilepsy being hereditary is very low. If that wasn't the case, or if my epilepsy were more severe (it's currently controlled by meds and previously was 99% focal aware seizures triggered by my menstrual cycle) it would give me pause. Ultimately I feel that although epilepsy makes life harder, the type of epilepsy I have is not so severe that I would say my life isn't worth living. I haven't ever wished I'd never been born and I'd hope that my daughter (or her sibling if we are ever lucky enough to have another) would feel the same way if she ended up with epilepsy too. I'd also say that when I was younger I never saw myself as a natural mother and wasn't sure I wanted kids, but my little girl is the most spectacular thing that has ever happened to me. Our relationship is so close and I feel so incredibly lucky to be the one she calls mama.
Well, considering I’m an epileptic and extremely happy to be alive and have so much gratitude that I get to experience the mystery of the universe, I wouldn’t consider my parents selfish at all if either had epilepsy. Not gonna lie, that guy sounds like a selfish douchebag lol ‘epileptics shouldn’t have kids.’ why not throw all disabled people in concentration camps so we can’t breed. My god, that’s the extreme of his shitty ass logic. It is your right and solely you and your partners choice to have kids or not. In my humble opinion it is literally no one else’s business. Do you like being alive even with epilepsy? That’s probably a good question to ask to see how you feel about having a child. Not my wife, or family or my friends have ever mentioned the thought of it being selfish for wanting a family even though I have epilepsy. They are excited for my wife and I. I consider it ignorant and a slight against anyone who has a disability for someone to think it is selfish for someone who is disabled to have a child.
1000% this is eugenic logic. Even if you have the most genetically perfect child, there's still 1000 and 1 things you can do to fuck up the kid's health, physically, psychologically and mentally. Health is _never_ guaranteed, life is random. Your perfect kid could get run down by a bus and become disabled any day of the week. They might drink horribly polluted water and get poisoned. It's not about bringing the most genetically advanced kid into existence, it's about creating a society where every kid, no matter how they came out, can thrive. Worry less about the generic composition in your body going into the kid, and do more about the world your kid is going to live in.
I do not think it is selfish. If you like, you can probably get some testing done to determine if you carry any epilepsy genes.
If my epilepsy was genetic, I wouldn't have a child. If someone else had epilepsy that was genetic and chose to have a child, I don't judge their choice. Unless they come whining about their kid being epileptic. You rolled that dice. Genetic counseling exists. People with all kinds of genetic issues can get that counseling with their partner to see what kind of outcomes they might expect.
There’s always a chance of having a child with epilepsy even when you’re not epileptic. 1 in 26 people will develop epilepsy at some point in their lives. There’s a harmful misconception that epilepsy is primarily an inherited condition. Until somewhat recently, people with epilepsy weren’t allowed to get married in many states because of that misconception, and several states also allowed forced sterilization. While it’s true that first degree relatives of someone with epilepsy have a higher risk of developing it, the genetics are super complex. There isn’t one “epilepsy gene.” You can have one of the hundreds of genes implicated in epilepsy and never develop it, and having that gene doesn’t mean it was inherited; it could be a spontaneous mutation. Also, as others have said, it’s entirely possible to have epilepsy that doesn’t have a genetic basis at all. Ultimately, whether or not to have children is an intensely personal decision, but calling someone with epilepsy selfish for wanting children is unreasonable.
My neurologist told me it's 50/50. I don't want kids for various reasons but knowing what my family dealt with when I was diagnosed and how absolutely miserable my epilepsy made me when it wasn't under control, it's a hard no for me. I really wouldn't want to risk the slightest chance passing it on to anyone but I know a lot of people don't feel the same. At the end of the day, it's your choice.
JME is genetically inherited on the maternal side. I’m never having children due to this reason. There’s a chance your hypothetical children will inherit it, but not 100%. Just makes it a lot more likely. My mother had epilepsy, and had 4 children. I was lucky number 4 who got epilepsy. Just my opinion, but I don’t want any kid to suffer the kind of shit I did as a teen. Not trying to scare you, but it is what it is sometimes. I think adoption is a wonderful option. Either way, you do what’s right for your family 🫶🏻
Interesting. I have JME and my father had a history of seizures. But I agree, no kids from me.
Everyone is entitled to their own opinions. But: The only reason my husband and I decided to have a child was because I DONT have genetic epilepsy.
I very much am & will always be childfree but when it came to how I felt with my epilepsy & having kids, I didn't really think about whether they would inherit it since I'm the only one in my family with epilepsy. The one thing I kept coming back to was that I can't, in good conscience, put a child through the trauma of seeing their mother have a seizure. Or what about if I can't care for them properly because I'm out of it? That sort of thing. I wouldn't say it's selfish, though, not at all. There's absolutely nothing wrong with wanting the experience of pregnancy and birth and raising a little human. But doing it safely and in a way that keeps you *and* your little human's best interests, safety, and security as a priority is what matters. Your feelings are valid and they matter, and I'm sorry he said such a hurtful thing to you.
I did inherit JME from my father, but I don’t hold it against him. I quite enjoy existing and wouldn’t want to hit the undo button there.
So I have genetic epilepsy and I hope this story can illuminate some things. I was having a discussion in class about a book, Oryx and Crake. The discussion came up about being able to choose/ design your babies dna(basically eugenics). Someone in class brought up how that could be a good thing because we could root out things like diabetes and heart disease. Now I've never had controlled seizures, although I'm on my way, but I ended up speaking about who I used to be and who I am now. How much my epilepsy was a struggle but also how it changed me for the better. I've learned and grown as a person from my struggle, and if anyone asked me if I could change it, would I? I wouldn't. With all the scars and injuries, I also have no aura, I would still never change it because it's made me who I am, and I'm proud of who I've become. It's something to consider that sometimes, when we struggle, it can have a positive impact, and trying to avoid it because it's more difficult can also be taking an opportunity away from someone as well. Also, does my struggle make my life worth less? Am I considered damaged? Am I the toy in the damaged box that gets a clearance tag slapped on it? Maybe, but it doesn't make me any less fun to play with.
I like living. I’m sure my kids will too even if they develop epilepsy
I think you’re super valid to have hurt feelings about him saying that. It’s not selfish to want to experience having/carrying your own child even if there’s a chance that child could have epilepsy (or any other ailment for that matter). Not all epilepsy is genetic. However, if your epilepsy is genetic that doesn’t automatically mean your child will have it. Genes are a crazy thing and just because you have a specific gene doesn’t mean it will “turn on.” You could go your entire life having the “epilepsy gene” and not have epilepsy or any seizures. Alsooooo, is he implying that someone with epilepsy is not worth having a life? Having epilepsy, while a struggle and a terrible thing, doesn’t make us any else of a person. If your child were to have it, it would still be your child and you would still love it. He’s kinda giving red flags. What if your child ends up having some other ailment that can’t be predicted? Will he love that child less?
I don’t think so. I didn’t inherit mine and even though I’m scared that my hypothetical children might potentially inherit it from me, there’s no guarantee that they will. Anyone with a brain can have a seizure, so even two non-epileptic parents can have a child with epilepsy or seizures. I don’t think it’s selfish to want to have a baby.
No history of epilepsy in mine or my wife’s family , my son has epilepsy, my daughter doesn’t. 🤷 I also know someone who’s mom had it, she and her sibling have it and her kid now has it. I also know people who adopted kids who ended up with severe health issues. You gotta be ready for it all if you plan on having kids.
Epilepsy is present in both my partner’s and my family. We don’t wanna have kids (unrelated), but we’ve had this conversation and we have different opinions. I (the one w epilepsy) wouldn’t want my child to have epilepsy, because (a) I don’t think I could handle an infant/baby w seizures while I have stress-triggered seizures and (b) I know it’s controversial but I already struggle so much, I can’t imagine being a child w this disorder and not understanding what is happening. As an adult, I sometimes have seizures that take me hours, even days to come back from, I cannot imagine what it must be like for a child. I know it’s an unpopular/controversial opinion, so I’ll see myself out lol
I am a parent of a child who has epilepsy. We found out that hers is genetic, SCN1A gene mutation. As a parent of a child who already has epilepsy that has been very difficult to manage, we are in the process of getting testing for ourselves to see if it is inherited or de novo. If we found that the gene was inherited, there’s no way I would have any more children. Supposedly, it’s a 50-50 chance that the gene is passed down if you have a mutation. However, we have a second child who has had seizures as well. I would never change having my daughter, but with the knowledge I have now would not take the risk with another child. Everyone’s opinions is going to differ based on their personal experience with epilepsy. For us, it has stolen a huge part of my daughter’s life. she has stated that she didn’t think she wanted to have children because of it. I told her that was completely her right whatever she decided. it’s interesting even for people who have SCN1A or other genetic mutations. One person with the mutation might have only had one seizure in their lifetime and another person with intractable epilepsy. It’s really a gamble.
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1 in 26 of all people will experience it at some point in their lives regardless of its in your family genetics or not. High number, right? No one should ever have kids with this logic.
I didn’t inherit my epilepsy. You can absolutely have a child and it is not selfish at all. If your child did Inherit your epilepsy then you’ll be the best mother for the job.
People with all kinds of diseases have kids.enjoy life, they might be ok. My mom had als but many als is hereditary it doesn't stop most of them
Personally, I think you’re boyfriend is not a good fit. My boyfriend has done extensive research on passing epilepsy down to children and we’ve even talked to his parents about it. I have JME too and my neurologist told me having a child with epilepsy is very low. If what you want is having a child, then you should do it (with guidance from your doctors of course). If you’re in a very serious relationship with your boyfriend, ask him to independently do some research. If he still dismisses your feelings, maybe think of moving on.
We’re not in a serious relationship yet, we’re just dating. We’ve gotten really close really fast though which is why we had the conversation. We’re not rushing to have kids, he does need to do his research though.
Lets say that its selfish, remember that every family has a disease. If you think like that, no one will have children anymore. Actually besides diseases, is it selfish to even bring kids in a world where suffering is guaranteed? And we can keep on going down the rabbithole, but thats how children think. Adults dont think like that, we understand the risks and hope for the best as there is a great chance your children wont have epilepsy.
No, not at all !
No go ahead live ur life
First off screw him for making you feel that way. Not all epilepsy is genetic mine isn’t but somehow my daughter has epilepsy too.. benign tumor in her brain. Children are resilient all they need is loving parents.
If folk think that way, then essentially anyone having a genetic condition would be classed as selfish and I don't believe that's the case. I think people who pop out kids and neglect or abuse them are selfish for having kids. Anyone who loves and cares for their kids isn't whether they may be likely to inherit a condition or not. Not all Epilepsy is genetic either. I've got TLE which is getting worse as I age but no immediate family members have it. My dad had grand mals due to a growth spurt in his youth but nothing else since then. I've got a 14 and a 6yr old and none show any symptoms as of yet. My 6yr old is ASD/PDA (diagnosed) and potentially ADHD which I have.
I wouldn’t wish this upon my worst enemy, let alone someone I’m supposed to love. I’ve seen percentages of it being genetic mentioned and it’s false-it’s actually 30-40%. Of course genetic testing can be done to know for sure.
Tbh, I think comments like his start veering toward eugenics territory. Epileptic people are and should be allowed to have children, and as you said, it's not all genetics with epilepsy. My epilepsy does come from a genetic condition (50% of cases it's genetic and 50% is a random mutation) and if my partner and I decided to have kids, we would do a genetic screening for it and probably would choose to terminate as a personal choice. But it's a condition that can range from mild (me) to absolutely debilitating with no prediction of the severity.
I literally am in the same situation as you and, in my case (not saying it’s a universal truth), I do think it is. I was adopted as a baby girl, and thus don’t have any background on my genetics (these kinds of tests are illegal in my country). I just know I’m epileptic, autistic and heavily depressed. I’ve always wanted a real and biological family and to carry my children. But risking this life of just pain for them ? Having them knowing I knew what they could go through and went on with it anyway ? I just can’t. All of these things can be transmitted, if not to them, to their own children. And they also could be way worse for them than they are for me. Also, the fact that I could never trust myself with them or during the pregnancy, since I could have a seizure anytime, frightens me. I’m completely against adoption, though, so it seems like there’s no solution. I don’t want to take chances like that. They would be my children, I would want nothing but the best for them, and not bet on their health like it’s nothing. I obviously know some stuff could appear « just like that », but knowing it and doing it is totally different.
as an epileptic, I have always questioned whether or not I should have children... Beyond the decision of whether to become a parent or not, being epileptic is a factor that (in my opinion) makes it more difficult to contemplate that decision: First of all, I've had enough crises in front of my family, but I can't get used to their worried/pity looks when going through another crisis again. I take into account the fact that it is a constant concern for them. And personally it bothers me a lot. I don't know if I could stand receiving that look from my own son. The last thing I would like is to feel a burden to him too. Secondly, I know that the percentage of him ending up inheriting my illness is minimal (although it is not zero) and I know that it is almost impossible for it to happen, but I am terrified of the fact that he inherited his illness and came to blame me for it. I know it wouldn't be completely my fault, but if I had a child, I would like him to have a normal life, without the discomfort that comes with having this disease.
I would get a genetic test done and then talk to a geneticist to see the likely hood of your potential future children having epilepsy. Then make a decision
I’m the only one in my family with epilepsy. From what I understand it usually isn’t genetic. I have two kids: zero evidence of epilepsy with them (and of course I’m always on high alert for any signs at all). The hardest part about having kids when you have epilepsy is knowing that you may have a seizure while caring for them. This is why I stick with meds even though I hate the side effects. It terrifies me to think about if I have a seizure in public, would my kids be alright? At home - they still need supervision. In public - there are a lot of sketchy people out there who wouldn’t have our safety in mind at all. What I would really consider: Are your seizures controlled? How long do you go between seizures? Are you on meds that are safe for pregnancy? Do the meds safe for pregnancy work for you (usually Keppra or Lamictal)? Can you insure that your children won’t have to experience you having a seizure and being incapacitated in times that you’re their only caregiver? These are the big ones
I inherited mine. My mom and her sister both have it. So I guess my TC epilepsy genes come from that side. It's a real possibility. You can never be sure. I'm sure there are some tests that can let you know. I keep thinking the same thing if I'm being honest. Why put someone through a disability as this? Where you might have to have meds for the rest of your life? Or have seizures everyday? But that's my opinion. You can be DINKS. Or you can adopt like you said. But I can see where you're coming from.
You can have an egg extracted that does not have the mutation. I cant remember what its called exactly. My son has epilepsy, his mothers genetics. His neuro was explaining this to us. Kinda hurt..because I couldn’t stop thinking about my son, surely he wouldn’t have this disease…but I still wouldn’t go back and “do it differently” Take advantage of technology.
I’m not sure that mine is inherited. I had a great grandfather with seizures, but I think they started after a head injury. I was extremely worried and anxious about it. I’ve got two kids and I worry about it every day but so far there’s no sign of it.
Some of the questions on here are super dumb
I think it is. Yes, as someone argue below, they could develop something else anyway, but this is a _known_ risk factor for a pretty terrible disease you shouldn't wish on anyone, especially not your own child. I guess the only pro would be the experience to help handling it
I mean, yeah, kinda. There's no guarantee of a 100% healthy child for anyone, but I woulsn't want to raise chances. Ask your doctor, though. That is *such* an asshole way to put it btw. Where did you find this guy and can you put him back?
I'm not gonna have kids but I also have JME and am literally the only person in my family to have it lol. It's not as genetic as you think! Sounds stupid but yeah lol
My son has no problem with epilepsy but my condition is not severe
Honestly, I'd talk to doctors before considering the option. You should know if there's a genetic component or not, and you're not finding out without some sort of genetic tests.
I have epilepsy, and take tonic clonic seizures. My neurologist first thought that my epilepsy was genetic, but then started leaning towards the fact that my mum had a semi-difficult birth & they had to use forceps to bring me out (mainly due to the forceps, it was interesting to hear that). However, my parents don’t have epilepsy, and they couldn’t think of anybody at all in the extended family that had epilepsy or even took seizures. I also know lots of people with epilepsy where their parents don’t have it. Yeah, sure, sometimes it can be genetic, there’s no denying that. HOWEVER, it isn’t selfish to have a child just because they MIGHT have epilepsy. It’s the equivalent of saying “I’m not having a child because I have X and they might inherit it.” Personally, if my partner said that to me, my feelings would also be hurt. I have went off on a tangent. As other commenters have said, your feelings are valid and genetic testing is always available.
I did inherit epilepsy. My dad has three sisters, two of which have epilepsy. He does not. Out of the seven grandchildren, I am the only one who is epileptic. By that logic, my sister shouldn’t have kids because hers might have epilepsy. It’s the luck of the draw. I have had a conversation with my partner and we do still want kids. There’s no guarantee either way that they will or won’t have epilepsy and, if they do, I know what to look for
Only if it’s genetic
Hi there. I also have JME (F 27) and I have to healthy beautiful sons (5yr old and 4month old) I got both genetic tested recently to see the chances of them having it also and I’m blessed to say they do not. It isn’t selfish to want something that comes natural to us. And the chances of our children getting it are very low.
Would it be selfish to have a child if you were diagnosed with breast cancer? I believe that is a higher percentage of being passed along to your children
Out of maybe 50 people on my maternal side only two have epilepsy (myself and a cousin). My cousins appeared in childhood but mine didn't until my late 30s. Like others said, chances are low to pass it along but if you have some sort of genetic condition where epilepsy is symptom, that may be different.
I honestly decided to be child free. I don't want to pass it to anyone else.
If you can control it with medication, I say no. Everyone is risking something. Even non epileptics can have a seizure. Raising another human will always be a risk. And you might be a better parent than 99% of people without epilepsy.
Everyone is allowed their opinion but my personal experience is my mom and a few other family members have epilepsy. We both got diagnosed in our 20s. We don’t think it’s genetic, but there is a small sliver. I wanted to be child free as is but that kind of sealed it.
I have genetic epilepsy and they tested me for it. To feel assured you could do that but I am still have children. It is not selfish because you never know. Just consult your neurologist and doctors to make it safe
I have genetic epilepsy. However I got it from my grandfather on my mother's side. So it skipped generations. It can stop with me or not. Never no. I have a 9 year old son and I don't think having him was selfish at all.
Why the fuck would you want to bring a life into this world/ society atm anyways?....(unpopular opinion)
We just found out my son has a mutated gene that gives a 50% chance of his kid receiving the mutated gene. He's 10. I'm not about to tell him he can never have kids. If he wants kids, he will have them. And he will do the same thing we are if they receive the mutated gene. Treat the epilepsy and hopefully with the help of modern medicine the kid will grow up to live a full and happy life, like he is.
Neither my husband or I have epilepsy and both our children have it. My youngest out grew hers (so far) but my oldest outgrew hers at 12 but started having tonic clonic seizures at 17. There are no guarantees of anything. I have MS and was scared to have children because of that. But I didn’t let it stop me. Sure, I worry so much that I have passed it down to my girls. But I’m still so glad I didn’t not have them. I feel horrible that some how my genes and their dads genes clearly mixed in a way to give them epilepsy. It sucks. But I still wouldn’t wish I didn’t have kids. I love my girls so much. Can’t imagine them not in my world
Mine's probably inherited, it skipped a whole generation. My great aunt and great uncle have it and I had a seizure, but no one else, not my grandma, her four kids, not my cousins or siblings.
Most people with epilepsy have not inherited it. The guy you are dating has managed to live with it. In the unlikely event that his children have it, they will have a great life too.
No. It’s not selfish. I could say a lot more, but I’ll just leave it at that. You have every right to have children.
My husbands family has Epilepsy from inheritance, every first born on his dads side gets it, my oldest daughter has it, but his dads fmily always grew out of it when they hit puberty, except for my husband his came back at puberty. But you never know with the future, yall could take a type of counseling to see if it could help yalls decision. Has your boyfriend seen others have seizures? With him having it and knowing how he feels about it,,, there is a good chance it could fk him up a lot worse mentally. Because in his mind, it came from him. In his mind his child could suffer just like him and its never good. His feeling about it is valid, That being said, it is different when you see your spouse having seizers vs seeing your baby kiddo have them. It is a different hurt in the heart, the anxiety is real but you dont want to smother it eith protection either because you will want them to be close to being normal. There is always that chance they will not have it. Its a true deep conversation between the both of yall.
He saw me have a seizure when I was in his own home this past weekend which, I believe has to do with his reasoning for not wanting this to happen to a child of his own. He saw his brother’s fiancé have one a few years ago as well. He also had one maybe 10 years ago, but that was drug induced.
Oh i read that so wrong im sorry! I thought he had it. But regardless it isnt selfish at all. My husband is epileptic and we have 5 kiddos. I mean, only advise i can give as an outsider is that will he be okay on your bad days? If he is scared of you having a seizure while holding the baby, just make sure you are sitting somewhere safe and look into a service dog, they are amazing and help tremendously. Just talk to your Neurologist to make sure your medication is safe for baby, and let your obgyn know your condition and they will help too. If your kid ends up having it too, well you will be able to help them understand and help them not freak out as much... but there is always that other chance fhey will be perfectly fine too.
Me too.
I inherited my stutter. Idk if it has anything to do with my epilepsy, but it is the number one thing that I hate about myself. I blame my parents for it. If I was a kid that knew I got epilepsy by inheriting it, I wouldn't like you as my parent.
I am under the camp of I *personally* don't want kids due to my epilepsy. However, I don't think epilepsy should stop folks from having kids. I've had a decent life despite the diagnosis at such a young age. Not all epilepsy is genetic, and even the types that are can have a low passing rate. Personally I'm more worried about my ability to care for a family, and the higher potential of leaving my wife alone with a child (or children). I understand that anything could happen to anyone, epilepsy or no, but the risk is certainly higher for me and it is something I like to consider.
I have two children, neither of which have epilepsy.
To everyone yelling about adoption, it’s extremely expensive and who’s to say that they will let you adopt if you have uncontrolled epilepsy?
I do not have epilepsy and my child has grand mal seizures that are intense; long, no conscious during it or even after it ends. Her entire body seizes up hard; she can’t breathe sometimes and her lips turn blue. It’s fucking scary. She’s miserable and can’t lead a normal life because of how bad hers are. I wouldn’t wish it on anyone. I think if I KNEW there was a high chance I would t have another kid. I don’t have them but people say they think my mom did- she was gone most of my childhood and died of cancer so I don’t know for sure. That’s something deeply personal that you’ll just have to discuss with your doctor and prepare for. Watching your own child go through that is so much different and so scary. It’s just heart breaking. I didn’t know there was any risk when I had her- I don’t have them so it’s just one of those things. You could have a child who doesn’t have them, and maybe their future child could have them. Or not at all. It’s not a sure thing I think it’s just increased odds but only certain types- talk to your doctor. Get a good picture of the odds and what not and make a choice. 🖤 It’s not all genetic 🖤🖤🖤
Using my reality as a talking point regarding the ethicality of this matter, especially because this is something I have recently also had to consider being that I have Ehlers-Danlos Syndrome, and highly suspect KEDS. Furthermore, being that I suspect the seizures I’ve been having have been temporal lobe seizures. Frankly, I’m not sure if I should have more kids. But that’s exactly the problem. I’ve had two. Henceforth I risk spreading my condition to any children I have both before and after. My two children who are alive are already at risk. I also happen to be a carrier for some very deadly genetic illnesses, which is to say that I could sire children who would inherit that gene or worse, potentially inherit the actual disease itself. Osteogenesis imperfecta. I’d be happy to provide a link, but by all means look it up. But I would imagine that just makes it even more complicated because they are already alive. What should I say? “I shouldn’t have any more children because I could have really sick children” but then I have these two beautiful healthy children. My takeaway personally is that it is good to know what is a possibility and even more so to have the preparations set for any sort of relevant contingency. My older daughter is already showing signs of hypermobility, some serious ones at that. I also suspect, like myself, she might end up being narcoleptic. But she is *alive* _*now*_, so I just want to know what I can do to help her if she does end up with a diagnosis- or even if undiagnosed what she can do to prevent further injury or further worsen of her hypothetical conditions. Ultimately, however, it is *YOUR* decision. And I’m sure you will do well by whatever that decision might be. Cheers!
I was told my seizures were caused by a high fever when I was 3. No one in my immediate family or extended family has epilepsy, normal MRI, normal EEG and clear genetic testing. The doctors gave me the green light to have kids and said there was absolutely no genetic link since it was caused by a traumatic brain injury. Guess what? It was genetic and now my kid has seizures and I hate myself. Don’t do it unless you can accept the guilt of possibly passing it on to a child. It doesn’t matter what the neurologist say and how low the chances are, it is not worth it. IMO Use donor egg or adopt. Also, if you think having epilepsy is difficult try watching your child have a seizure knowing it is all your fault. I fully expect my son to blame me for this later in life and I would not be surprised if I lose my child to SUDEP. Then there is the medical bills, your partner starts to wear down under the weight of 2 epileptics under one roof and the endless pill bottles/hospital stays/neurology appointments. My biggest regret in life is having a child of my own and if you think you are in the clear because of genetic testing, no one in the family has it, or your seizures are caused by car accident/injury think again. If you can handle an epileptic child, deal with the guilt while dealing with your own epilepsy and watch your kid suffer through seizures then do it. Assume you are in the 5% that will pass it on because you very well might be. Be prepared for that and be aware because I was definitely not.
I didn’t even know I was having seizures / had epilepsy until we were done having kids… We watch them close for signs and symptoms. JME subtypes can be recessive or dominate based on type, gender and race. Having kids is always a genetic gamble but you could get genetic testing done before hand to see if your’s is dominant or recessive. Personally, My seizures are controlled, my life is full, I’m a nurse, I can drive. My kids are seizure free so far at 7 and 8, I wish I could say that for the ragging ADHD I passed to them. 😂 Good luck !
Something that I’ve looked into (for other genetic condition) is embryo adoption. You adopt an abandoned embryo and essentially have IVF. I can’t answer this question bc I don’t have a great answer either
I have JME too. I haven’t met many people with it. I don’t think it’s selfish because I myself want kids. However my boyfriend knows that he will need to do a lot in the first couple of months where sleep is a factor for seizures.
I am 7 weeks pregnant with my 2nd child. I didn’t get diagnosed with epilepsy until 5 months after I had my first child. And as far as I know, none of my family has epilepsy. There’s a lot of heart conditions that run in my family though. And my husband and I decided that we were going to have one more kid before we decide to not have anymore because it’s a lot of stress on your body. I completely understand wanting to actually experience labor and birthing a child. I’m sure they will just do extra appointments to make sure everything is going well! My neurologist actually upped my med dosages to try to prevent breakthrough seizures as much as possible. I’m sorry, this comment probably wasn’t helpful. I just want you to know that I was nervous about having a child when being diagnosed with epilepsy, but I’m glad I get one more chance to go through it before deciding to not have anymore kids.
My wife and I are not having kids. Now we knew it wasn’t really something either of us wanted 100% but we’ve also thought of how much of a strain one parent having a seizure disorder (me) would be on the other parent in terms of stress and anxiety. My triggers are lack of sleep, lack of hydration, anxiety, and some past unresolved trauma. Psychosomatic. So when we first told our friends and family we really didn’t mention the genes possibly being passed down. It was that kids are a lot of work in general. So, I as a partner am going to expect my wife to carry this baby for 9 months and then for the next 1 to 2 years do all the middle of the night feedings and changes? Neither of us would feel comfortable with me waking up on 3 hours of sleep to hold the baby and feed it with the possibility of a seizure happening. She wouldn’t be able to sleep knowing that and I’d have that thought every time. Just would cause a lot of extra stress for the both of us that’s not needed. And since neither of us really were set on wanting kids this helped us solidify our decision and I think our community needs to keep this perspective top of mind.
We don’t know if I inherited mine. I already long ago chose to never have children, prior to my diagnosis.
I’m scared tbh. I always have been. My husband said it would be a gift if we have a baby because I have genetic epilepsy AND grandmal.
I have epilepsy and love my life; I do not wish that i did not have it, because it made me stronger on my journey and brought me to places i felt i needed to go to. It changed the course of my life for the better. If my parents had the mentality to not have kids i wouldn’t experience this beautiful life. Don’t forget that Epilepsy is sacred in many cultures- i think its important to step out of the mental constructs of today’s society.
CBD OIL (Nuleaf natural is the brand I trust and use) you’re very welcome ♥️ keeps my nervous system under control with little no side effects #naturalremedies
The chance is pretty low. I want to say 5% but don't quote me on that. I have a healthy child and and I know others whose kids are fine. Boyfriend should check his facts first. I had to take certain precautions, such as don't bath my baby when on my own, and formula was recommended over breastfeeding so I could get a better night's sleep. But as long as you're sensible, there shouldn't be an issue.
So I'll open with a saying my mother and I always say. Having a child is a selfish act. Nobody asked the child of they wanted to be, but the choice in itself is yours. On the subject of having a child while risking the chance (low chance, even lower if the child is a girl) I fully understand. My wife and I had this very conversation over 13 years of marriage before finally choosing we were "ready" and went through with trying. I myself am a religious man so I prayed, I didn't know my wife too was praying and neither of us knew her mother was as well praying. Lots of prayers, and we felt ready. You reach a point in your life where the choice is now or never and you have to choose. Speaking from experience on having my own, being the man who got to deliver my daughter while both my mom and her mom were holding my wife's hands. There are no words I know in the English language that can describe the feeling of fearful happy sadness. I tell people that it is something like a food or a drink that you have never had, you don't know what you're missing until you try it. Unlike those foods and drinks, you have to be committed to it. On the other hand, adopting is a way of finding your little one that helps you help them. My brother had to put his daughter up because he and the mother of were just kids themselves, and to this day he still crys when nobody is looking. But thankfully we know the person who adopted and they share from time to time. They even have had a few more kids since then if their own. And they have been so happy (so I am told) for not only their adopted and bot adopted but also because they had kids at all. Yes there are so many out there who shouldn't be allowed to reproduce, and there are those of us who wish to but fear, not for ourselves but for the child. But until you take that step, you'll never know. And I will admit it, that itnis tough. I have woke up from the floor and my daughter is sitting with me telling me "you're okay daddy" while I regain my consciousness. And I have been taken to the hospital while she waits at hone with gma. But in the end, she loves me. She always makes sure I know she loves me, and that feeling alone is worth having a hundred seizures in one day, the headache and body ache and confusion and endless feeling of falling while sitting still. I would endure it all, just to be able to hold my baby girl. And that, I never knew until I held her for the very first time. So, ask yourselves, all your questions, but remember that in the end, it's up to you to choose. I hope you make a good choice for you as a couple and you are happy every morning after. ... Sorry for being long winded there.
Your bf just casually said he agrees with eugenics. I hate to be that Reddit dork but please start looking for other red flags, because that one is blaring.
A lot of people arent aware of this but epilepsy is common in people with ASD and I have autism so that's (likely) why I have mine, it's not always genetic
Having kids was the most eye opening experience for me, I learned so much more about the world and what makes people tick. I highly recommend it. Your kids will be strong, healthy, with all 20 digits and smart as a whip I’m sure.
Hey, hi there. First of all sorry that your bf responded that way, that sucks and it's not selfish at all, absolutely no one would hold you accountable. Secondly, JME isn't that big of a deal, i have it too but im wondering is it really genetic? Thirdly, the funny(shitty) thing about life is you may very well have a child with no epilepsy, however your bf might, or other defects etc. you fan never know and it just sounds like a cop out from your bf. I think you never know how you got it right? Also, i dont often meet or get to interact with people with JME. Do you mind if i ask what pills youre on? Is it generalized?
I take Zonisamide and Lamotrogine. My birth parents didn’t have epilepsy, but my twin brother and I both developed it when we were around 15-16. We’re 27 now. I have jme while my brother just has grand mal seizures when he doesn’t take his meds. I’m not sure if mine is generalized or not.
JME is a form of generalized epilepsy. Google is your friend.
God no. I wouldn't have one. (Downvotes incoming?)
If it’s genetic, I wouldn’t have a child. I’ve worked in children’s hospitals for 36 years, and went through being bullied as a child due to just falling asleep in class from my meds. Yes, I think it’s selfish if it’s genetic…as well as any other genetic disease people know they’re passing on to their children. It happens all of the time.