Post # 1
So I was officially diagnosed with Epilepsy today. I posted in the wellness on Monday about my insurance issues etc.
So the thing is, the doctor told me something very upsetting today. Rewind to 5 years ago when I was pregnant, I was on bed rest the whole pregnancy due to hormone and kidney issues so I was taking the whole pregnancy super easy. No stress, staying inside all day, I was serious about it. But the whole time I got these mini episodes sometimes 20-30 times a day. But she was born and beautiful and healthy apart from her jaundice.
So my fiance and I are getting married and hope to have a baby in about 2 years. Problem being the new diagnosis. The neurologist said that when I was pregnant before those were simple partial (I think she called it) seizures I had so frequently so had I not been on bed rest things could have gotten bad.
According to the neurologist, if you have a seizure, like a tonic clonic type (which I’ve had a few of those at least clonic seizures and one confirmed tonic clonic in the last few years) that they can cause a miscarriage, that it greatly increases the risk. So I can’t get off the medication, well they don’t recommend it. But if I stay on the medication, the antiepilleptic drugs greatly increase the risk of deformities in a baby.
I don’t know what to do. I know it’s still 2 years away but this has me really sad and worried. I want a child with my fiance, maybe even two. But I don’t know if I could take the risk either way. Increasing the possibility of a miscarriage or the possibility of deformities. I don’t know what to do! I know I have time to make that decision but what would you do if you were given that option?
And anyone with epilepsy and getting pregnant? If so do you mind sharing
Post # 3
My fiance has epilepsy, and currently has a tonic clonic seizure about once every 6 months – down from once every 3, and that’s with medication. He’s able to raise his seizure threshold through lifestyle things (no alcohol, getting enough sleep, etc.), but that might not always help. The main thing that helps him is the medication, though. He had a sleep study done to better understand his specific kind of epilepsy and it helped to know more about it and what options were available (e.g. he can’t have surgery to fix it b/c it’s all over his brain). If you know more about your specific kind of epilepsy and what triggers your seizures (if anything), you’ll be better prepared to make this decision.
If I were you and your epilepsy was ~1 convulsive seizure a year without medication, I’d be tempted to risk the miscarriage.
Disclaimer: I don’t have personal experience, but I am pretty familiar with epilepsy through my fiance. Props to your fiance for supporting you through this – it isn’t always easy and can be scary. =)
Post # 4
@kris325: Im not sure if this helps, but one of my girlfriends who has epilepsy recently fell pregnant (unplanned). As she was on medication she was given the same advice as yourself.
She wanted to go through with it, but early ultrasounds picked up that there wasnt something right with the development of her bub. Sadly she ended up having to terminate the pregnancy at 16 weeks. As she was going to be a single mum she wasnt sure if she could cope with the responsibilty of bringing a child into the world with a disability. She is now Heart broken. 🙁 I too am not sure that she will go through it again. I think for the moment she is still greiving her loss.
Guess what im trying to say is, if your prepared to take the risk and you dont want a child with a deformity, be prepared to lose something that you know you will instantly fall in love with, have dreams for and feel growing within you. Deciding to terminate a life that you have created is really tough, but with the right support such as counsilling and support from your family it can be less traumatic. If your fully ready to accept and prepare for this loss, give it a go.
On the flip side, if your prepared to bring a child into the world who may have a disability of some sort, you need to accept that you will love this child no matter what and are fully prepared to accept the emotional, physical, and fianancial cost of raising a child with a disability for the rest of your life. In saying this though, I know plenty of people who are born with physical disabilites and it does not for one second hold them back. Sure they have to incoroporate interventional therapy into thier lifestyle but I have never heard one of these people wish they were not born because of it. especially if they are raised in a family whio believes in their abilities and values them as a completely normal person. It is amazing how resiliant people are when they have/need to be.
I guess If you really want to try, do some more research about what deformities your future child may have such as whether they are physical, mental or both. Are they typically deformities that will serverley impact on the childs quality of life or will they be easily overcome with the right support and intervention (mechanical legs, wheel chair, physio therapy, occupational therapy, etc). I personally would be more concerned with the impact of my babies mental health (mental retardation) over a missing limb.
Its a really tough decision, and I do not envy you one bit. Its easy to say be happy with the one you have but I know that having a baby with the man you love is a very special thing. I hope you find peace and happiness with what ever decision you make. xxxx
Post # 5
My heart goes out to you. Is there another neurologist that you can get a second opinion from regarding drug options? There may be a drug treatment choice out there that is slightly less risky and, if not, at least you would have explored all of your options. I will pray for comfort and wisdom for you.
Post # 6
I have epilepsy. I’ve only had 2 seizures but I’ve been on meds for 11 years now. We’re in the process of trying to lower the dose as much as possible and get me off one of the meds (it has a higher risk of birth defects and is habit forming…sigh) while trying to make sure I don’t have any symptoms. It’s a very slow process and very frustrating.
I don’t like taking the meds but I am terrified of having another seizure especially if I were driving. My doc says I will always be on meds because I could have a seizure tomorrow or I could go the rest of my life without having one…there’s no way to know.
Post # 7
There are many anti-epileptic drugs out there and some are safer in pregnancy than others. When the time comes to TTC you may want to speak to your neurologist about other medication options that may be safer for your baby while still providing good seizure control. Good luck!
Post # 8
@fluffernutter38: I agree with you on risking the miscarriage. I don’t thi k it would be fair to your baby to risk is having a deformity for its entire life. It could be something small but it could be something completely debilitating. No matter what you choose to do, make sure you’re comfortable with your decision.
Post # 9
Sorry to hear that. I was dx with epilepsy very young and I remember my mom being so upset and telling people I probably wouldn’t be able to have kids due to the life-long medication….but I decided to come off it at 18 and the seizures never returned, I’m 30 now. I realize this may not be a realistic hope for you but I remember feeling a bit sad about all that before, especially having no children at all.
I think if I were you i’d continue my plans for marriage, etc knowing that this is going to be a difficult challenge. Talk to your doctor, express your concerns, if they wont’ listen talk to another doctor. There are medications that may have less risk to the fetus, but perhaps are less effective, but you have to consider risk vs. benefit. If you decide to foregoe effective medication to concieve, you won’t be able to drive, be left alone very long, you may need a service animal, etc.
So, yes, if you decide to have more kids, you may have to give up alot to make it happen, but have faith you won’t be faced with anything you can’t handle.
Post # 10
If I were you, I’d definitely look into adoption.
Post # 11
I had seizures (petit mal) as a young child age 3-5. I was on medication til I was 7, but my mother was convinced that the medication was doing more harm than good and completely weaned me off of it. I am now 24 and have not had a single seizure since being off of the medication, in fact I was too young to remember the ones I did have.
I don’t know what advice to give you because my seizures were a completely different type and have not asked any doctors about any risks I will be taking when I do ttc. Maybe ask your doctor if there is any other less dangerous medication you can take, or ask what are the risks if you try to wean yourself off of medication. My mother told me the doctors said I was supposed to stay on medication for life, but she took the risk and went with her gut. I don’t want to tell you to do the same. Consult with your doctors and fiance, and go with what you feel is best.
Post # 12
@fresitachulita: I just want to add that just become someone comes off meds (especially so young) does not mean that everyone can do such things. My uncle (and also my fiance) both have epilepsy (and if my uncle skips his meds, he WILL have a seizure that night) and will be on medication their entire lives. I wouldn’t jump to the adoption option yet, as @bebero suggested, especially if your seizures are so infrequent. You seem to have it relatively under control. Definitely find out more about your condition. My fiance’s neurologist says we have less than a 5% chance of passing it on (4% from him, <1% from my uncle), and we’re ready for it if it happens.
Post # 13
Honestly, the best advice is for her to talk to her neurologist, OB-GYN, and possibly seeking multiple opinions. EKGs and sleep studies will also help in understanding the type of epilespy (lots of folks assume all epileptic conditions are the same) she has and how best to treat it, through lifestyle and medication.
Post # 14
@nellybee: I agree with what you said about going off medication – my fiance’s father tried to convince him that if he established a strict routine he wouldn’t require medication (not true). In fact, it has the opposite effect – making him try to fix things on his own without consulting doctors… =(
Post # 15
@bebero: Why do you say this? Parents have a ~4% chance of passing on epilepsy, and with a mother with so few seizures (and someone who has observed seizures), I don’t see what the problem is, especially if her doctor supports it. You seem to just want to take the easy way out. I have a 5%-ish chance of having a child with epilepsy, thanks to my fiance and my uncle, and while that isn’t the same as me having epilepsy, if I knew that there were ways to lower my likelihood of having seizrures, and it by no means inhibits my ability to have a healthy child.
Post # 16
@kris325: Are there other meds out there that are safe for pregnancy? I am a nicu nurse and we have had babies born to mothers with seizures/on seizure meds perfectly normal and healthy. I guess I’d want to know the % of likelyhood of a deformity and different medication options. Since you are 2 years away from TTC it seems like a good amount of time to be able to switch meds and make sure they work for you before TTC. But I know finding the right medication for you isn’t easy so it may be hard just switching them around. There are a lot of options now a days I would get another opinion and talk to your OB/neurologist more about it.