to have children?

[Littlebluesock]

Hi all, first time starting a thread so would really appreciate some input! DP has a child from a previous relationship, who I absolutely adore. Luckily his EXP and myself get on really well and there are no issues with me being involved in her life. Recently DP and I have been thinking about having a child of our own in the future.

However, I was diagnosed with JME (Juvenile myoclonic epilepsy) at 14 and am pretty sure there is a genetic link. My dad has generalized epilepsy and has not had a seizure for about 9 years now as it is controlled with medication. My paternal grandfather, we think, has got undiagnosed epilepsy (appears to have absence seizures, and the 'jerks' in his arm that I originally started off with), however he refuses to go to a neurologist and insists that nothing is wrong so we can't actually be 100% sure.

Am I being unreasonable to have a child, when I know full well that I could be passing on this illness to said child? I am actually thinking atm I will never have a child because of how much the diagnosis affected me in my teens.

I was in denial for a long long time, I was originally put on medication but this seemed to exacerbate the seizures. I originally went to the doctors with jerks in my arm that happened usually when I was tiered or having just woken up. However for whatever reason whilst on the medication I started having full blown tonic-clonic seizures, the first of which happened when I was 15 out shopping with friends. I came round and a first aider from the store was holding me down and accusing me of being on drugs, this caused me to start having a panic attack. I also wet myself which was horribly humiliating.

Because of this I started to get anxiety around going to school, incase I had a seizure there in front of my classmates so I started skiving and self medicating with drugs and alcohol. Luckily my mum stuck by me through all my nastiness and horrible things I did including stealing from her and my younger brother to buy drugs. I was eventually referred to CAHMS but only really started engaging in counselling around the age of 17.

Luckily I managed to kick the drinking and drug taking undertook an access course and am now due to start a degree in mental health nursing this september. However I still feel a lot of guilt and conflict over the stress and worry I caused my family by the things I did, and having a child when I know there is a risk they could also have epilepsy feels horribly selfish to me! So AIBU? (Sorry for the longness of the post I have never really talked about this IRL to anyone other than my counselor)

Have you discussed the risks with your go? Researched them in depth? Looked at all the options available?

Would you consider adoption? Fostering?

for you.

It is incredibly unselfish of you to consider NOT having a child in my (very selfish when it comes to babies) opinion.

GP bloody autocorrect

YANBU. I have epilepsy (though have never had tonic clonic seizures which I'm sure are a different ball game) and I'm pretty sure my Dad had it too as a child. I had a tricky time in my teens (diagnosis took a long time and missed lots of school) though nothing so upsetting as your shopping incident, which you have my massive sympathy for.

It never occurred to me not to have children, I must admit. I keep an eagle eye out in my two DC (eldest is four) but so far, so good. IMHO many, if not most, cases of epilepsy are not debilitating to the extent that you should consider not having a child of your own. Plus medication options are so much better than they were years ago. Good luck with whatever you decide!

Thanks for the quick replies!! I have done and he just kind of brushed it off, saying it would not be a big deal as it would be able to be controlled etc etc. Tbh I don't think he really understands the risk or how humiliating it is to have a seizure and wet/soil yourself in public (but to be fair, how could he?) I am not on medication atm and only have around one to two seizures a year (which is a big improvement as at my worst I was having 5-6 a day!) I've noticed a link between me drinking heavily, lack of sleep and not eating properly and seizures, so I am very careful to not overdo it on a night out/making sure I'm eating well/sleeping properly IYSWIM.

I would definitely consider adoption/fostering so that would definitely be something to look into! I will also look into the risks and genetic side of things

My DS has epilepsy, I hope he goes on to have DC of his own and live a full life.

Ps Just an aside - possibly it's just lifestyle change, but my epilepsy has settled down considerably since having kids .... :)

Go see your GP and get a referral to a genetic counsellor.

They can talk you through it and give you stats of the likelihood of any offspring being affected :).

Rumble that is very reassuring! Tbh I did want to hear something like that . Its not so much the actual epilepsy side of things I worry about, as I feel seizures are a lot more scary to witness than to have happen to you (as you don't know its happening if you catch my drift haha) and you are right, I suppose treatments have come a very long way! Its more the emotional side of things I worry about, feeling like I wasn't 'normal' IYSWIM that I would hate for any potential child to go through. Thank you all for being so lovely was a tad worried about posting in AIBU as I've seen how out of hand some threads can get but figured I was likely to get more input here than some of the quieter boards!

I was going to suggest genetic counselling too - you may be surprised at how small the risks are, or you may find that your husband takes it a bit more seriously then the stats are laid out in black and white. Either way, the most important thing is for the two of you to be on the same page about it as whatever decisions you make, you will need to be totally happy with them and not risk 'blaming' each other if things get tricky.

DoJo + micah I will look into genetic counselling I never realized you could get it through a GP, or on the NHS for that matter.

My DD has epilepsy, and I worry about her in the future when the time comes for her to start thinking about having a family. Neither myself or my DH have epilepsy, so although it can be genetic it does skip generations and the consultant told me that it can also go 'sideways' via siblings who are not affected themselves but maybe carry the gene, so sometimes it can get passed to a distant cousin several generations on. So in short, you never know and cannot predict who will be affected.

You have my sympathies about the seizure in public, and it is a worry for my DD too, but she has had two in public and I can honestly say she has only ever received kindness and understanding from passers-by, and lots of offers of help. In your case the first aider sounded like a mean and horrible person, but that does not mean anyone else will react like that.

So I would get as much advice from your GP as possible, of course discuss it with your DH, but if you want a child and the only thing stopping you is the what if? then I would say this- If I'd have known in advance that my DD was to have epilepsy, I still would have had her, as her life is so much more than just her condition, if you see what I mean. You are also in a good position to advise someone on living with epilepsy, so you will be much better prepared than I was, and we are managing to give our DD a 'normal' and hopefully good life. I wish you all the luck, you have done really well to get to where you are. Sorry for the really long reply, hope it was not too boring!

Yes, to the Genetic counselling on the NHS, DH's GP referred us for something else.

No, you wouldn't be selfish to consider having a child who may have epilepsy. You could have a a child with DS, or CP, you just don't know what may happen, the world would be smaller and less rich if we all only had 'perfect' children.

Treatment of epilepsy has improved considerably and you'd pick it up quickly if I'd did occur.

You need get genetic advice 1st and then decide.

If your child did have epilepsy, they wouldn't have to feel 'different' - you'd be there to support them, and would be able to understand what they were going through. also I think you should forgive yourself for how you behaved in your teens as you were trying to manage your condition - sounds like you had a rough time and deserve sympathy not condemnation.

StanleyLambchop thank you so much! Your reply was really nice and really eased my worries. I do agree that a person with epilepsy is more than their condition. I think looking at it from this perspective is definitely much better! I am sorry to hear about your DD suffering seizures as well, but it is lovely to hear that people have been understanding and offering to help. I am sure with your support she will accept her diagnosis with more ease than I did! I think maybe the first aider in my case did not really know what to do? I know it doesn't excuse her behaviour but hey ho! I have also been told by a friend whose DS has epilepsy that they now refer for counselling to deal with the diagnosis - she said this has helped him greatly! I was never offered anything like that and think it would also have helped me. However this was 8/9 years ago, and I think there is a lot more awareness surrounding the condition which is both reassuring and amazing!

• SauvignonBlanche your post also has helped me put my worries into perspective. You are right I am basing my fears all on what if's and maybes!

Again, thank you all for your replies! I will be making an appointment with my GP this week to discuss genetic counselling, and will undergo that before making any decisions! I must say I do feel a little less fear/worry after your responses!

I had JME as does my sister. I still have rare "episodes", but no longer take meds. I have a DD and a DS. It seems to be passed down through the women in my family, but skips a generation. I still would have had children even if it didn't. I have coped with it, my sister copes with it. Medication is fab and advancing all the time (sis and I involved in clinical trials with our neurologist).

I don't believe in living for what ifs and buts, however I can appreciate were you are coming from. I think ultimately it needs to be your decision. Perhaps as others suggest, you could speak to a medical professional, maybe someone doing research in the area?

Also meant to add, part of the clinical trials we are doing are to establish the genetic link - apparently it's uncommon for siblings to have it!