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Any mums/mums to be with epilepsy? Rss

Hi,

I just want to find out who else out there is pregnant or has been pregnant and also has epilepsy. I am 22 and was diagnosed last year with epilepsy, and started on sodium valproate. I'm only on a low dose as just after I started taking it I found out I was pregnant and the neurologist doesn't want to increase the dose. I'm now 28 1/2 weeks and just been thinking a lot about it, especially since I found out recently I wasn't taking enough folate! But everything with bubs is fine thank god.

Look forward to hearing from anyone, it is a bit of a touchy subject for me and I find other people don't really understand how worrying it has all been.

Aimee

Hi, please don't stress too much - my mum had epilepsy and was on Dilantin in fairly high doses when she was pregnant with my brother and I, they were very concerned that we would suffer issues from the drugs or get it ourselves or if it skipped us then our kids would get it. We are all fine. I believe your body gives what it needs to the baby and does what it takes to protect it (which bums us out eg the iron and folate) but its actually perfect for our little babies as they are safe and happy and healthy and you can catch up on what you need when you know.

Also, my friend has epilepsy - the minor seizures got worse after she had her daughter and it took a long time to work out the medication but I'm pretty sure she's now off all meds or on extremely low doses and has now been seizure free for 18+mths!

Good luck, and Im sure if you are concerned your specialist would be happy to answer any of your questions to ease your mind.

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hey hunny

i'm in the same boat as you, i just found out a few months ago ihave epilepsy and i just tested last night and i'm pregnant. is scary cause i don't know what to expect and am so nervous about this baby cause of the medication. my son was so healthy and the pregnancy went great but i wasn't on meds and didn't even know i was epileptic then.
would be great to know howyou got through it, the steps you had to talk re meds and how youare coping can you still drive? will they let you go to full term?? sorry for all of the questions just need to know lol

Hey JackRube (sorry I should remember your name from July thread but I have forgotten!) thanks for the reply, makes me feel a lot better. Like I said, bubs is fine, I've had 4 scans and blood tests and it's all great but it doesn't stop me from worrying sometimes.

Riley'smummy - I know what you mean! I had a panic when I found out I was pregnant too as the neurologist told me we would have to plan meds around me getting pregnant but I didn't realise I was already pregnant at the time we had that convo. The first thing you should do is call your neurologist and tell them you are pregnant. What medication are you on? The good thing is that you have gotten through one pregnancy fine without any problems with your epilepsy.

With me I just talked to my neurologist, saw the GP and made sure I took folate which is the issue with my medication (Epilim), to prevent any neural tube defects. I am classified as high risk so I have had 4 ultrasounds including the NT scan at 12 weeks.

I did have to stop driving for 3 months after I started the meds but at my 3 months follow up my neurologist was happy with how I was going so she signed the form for the RTA and I was able to get my license back. It's not even restricted now.

I don't know if they will let me go full-term, at my last ob app I had a lovely doctor who said they will just monitor me. But so far there is no indication that there are any problems with my epilepsy so I am wanting to just let everything happen naturally.

Sorry if I have rambled a bit I just wish there had been someone I could have asked all this stuff when I first found out - so I am more than happy to answer all your questions!

Aimee

hey hunny

your not rambling! i'm just so relived that there is someone who is going through the same as me and can give me some advice! your a godsend lol

that happened to me he just asked me a week and a half ago. i would have just been pregnant when he asked me about wether i wanted a baby in the next 6months!
i'm calling them first thing monday. but am flying to nz for my son's 1st birthday on wedswe are going for two weeks lol i'm on lamotrigine. so hopefully it's not too bad for the baby untill i can get to see my specialist.

cool yeah i'm booking a dr's appt for monday or tuesday and have started taking elivit to be on the safe side i justdon't want to risk anything.
are you going through public?? do youhave to pay for the extre scan's?? yay atleast you get to see your baby more grin i hope i get to have 4 ultrasounds.

yeah i'm only just getting mine signed for the first time lol well i don't think that is going to happen now! gah another 3 month's without a lisence is going to suck lol

i'll be crossing my finger's you get to have a natural birth, it is truely amazing.

what part of auz are you from?

Hi,

Lol it's a bit inconvenient when that happens hey, I felt a bit silly ringing my neuro and telling her lol but she was lovely.

I have not heard about that medication you're on so I can't help with that sorry. All I know is that the recommendations to prevent NTD's is to take 5000 micorgrams (ug) of folic acid which is 5mg. I never took that much (I only took the normal recommended levels of 600ug) and normal supplements don't have that much in them. Just ask them how much you should take.

Yeah I am going public and only see the docs & MW's at the antenatal clinic for my care. Also have all my scans there as they are free. My GP is not involved in my care. I am from Newcastle in NSW so I go to John Hunter Hospital if you have heard of it.

I hope you sort your license out, I lost mine for most of the first trimester when I was going through MS and dealing with the big news so I felt really isolated not being able to get out of the house (we live out of town).

Hope all goes well for you this week!

yip i've got to ring him tomorow i'm not looking forward to it :S

ok awesome thanks for that. can't believe my bad timing lol i'm going away for two weeks when i really need to be seeing drs haha

awesome i was worried all the extra scans would cost alot more. do you go monthly or fortnightly?
so i know silly question but i honestly have no idea.
oh!! i'm from the central coast about 45 mins away grin i can't go to wyong though because will be highrisk.. so gosford it is for me lol

yeah i'm just at my 3 months now lol so yeah just going to be a tad guttered i have to do it again. but lucky i have the most amazing friend, shes been so great!

Hi rileysmummy how is it all going? I hope you were able to sort out the travel and dr app things which were clashing before. I have not been on for ages.

I had scans at 5 weeks (confirmation scan - they thought I was further along), 12 weeks (nuchal translucency), 19 weeks (morphology) and 28 weeks (to check growth & fluid). I did remember I paid about $30 for the first and a bit more than that for the second but the other 2 I had at JHH so they were free.

I have a friend at Gosford hosp at the moment, doing a clinical placement (we are student dietitians), she says it is great there.

Anyway hope everythings fine, are you still able to drive?

I saw my neuro a couple weeks ago and don't have to go back until after bubs is born now (unless it's really overdue lol).

Aimee

Hey

Sorry I han't seen that you had replied grin
Everything is going ok, I decided to wait until I heard back from my neuro as to wether I went or not. and luckily he got back to me in time and said I just needed to take folate 5mg, which was amazing!. I have an appt with him on Tuesday, I find out then wether i can drive or not. I'm not sure wether he will want to change my meds now that i'm a bit further along?

My partner is really worried that we are further along and we will miss the window or the 12week scan. He's scared the baby will have something wrong with it and we won't know. But the DR seems adimint that is when we will be 12 weeks then. The 12 week scan is ging to cost us 220. But I guees that is a small price to pay for piece of mind.

That's great to know! I've heard somany mixed stories about Australian public hospitals I was worried lol

That's great! Is alway's a relief when there's one less thing you have to worry about.

Howis everything going with your pregnancy? Have they said anymore about letting you go to term?

Hi there,
I too have epilepsy. I was diagnosed in early 2007 and take 400mg tegretol (carbamazepine) twice a day. I have recently given birth to my first daughter 9 weeks ago. I had been taking 5mg folic acid since I was diagnosed with epilepsy as a precaution.
I'd just like to let you know that I had a reasonably trouble free pregnancy and labour and besides some problems with her hips (I too had this as a child) my daughter is perfectly healthy. She is breasfed and the medication doesn't seem to affect her too much. She was a little sleepy in the first week following birth and not attaching the best which the paed said my medication could be affecting her a little. But don't panic as my daughter is just fine now and continues being breastfed.
I did not need to change dosage at all whilst pregnant. My tegretol drug levels were monitored more frequently whilst pregnant and they did drop a little but nothing too major. I continued with the folic acid throughout the entire pregnancy.
I wish you luck and if you have any further questions please don't hesitate to email me smile

Cheers
Meegan
Rileysmummy I wouldn't worry about the NT scan, I think I had mine at around 13 weeks, there is a bit of leeway with the timing. You should be able to get some of that back from Medicare I think? Thats great that your doc thinks all will be fine, although I doubt he would increase your dosage or change meds while you are pregnant. My neuro was pretty much saying it was a last resort to increase my dosage and she said we couldn't change meds at all.

So I'm seeing the ob this week to talk about the labour and birth. I spoke to the midwife about it at my last app and she said since I haven't had any complications so far that I should be fine to go full term which is great. But she has booked me in to see the ob this time just so I can discuss it with him as well. The only thing I'm concerned about is the breathing as I know hyperventilating is one of my triggers but I'm just going to research some breathing exercises and I'm sure we'll go through that at antenatal classes too.

Meegan - it is great to hear from someone else and I'm happy that everything worked out well for you. I think I will continue taking folate after this bub arrives too, I don't want to feel guilty again if I were to ever fall pregnant unexpectedly again. Although I'm not sure I would want to take 5mg, it's just such a massive dose, have you ever known/had any issues with that?

Hi there...
Please do not worry too much. My mum has been severe epileptic since she was 1 and had 3 children and we have all turned out just fine smile

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