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Epileptic wanting to TTC this year
Experiences with this please

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12 replies to this topic

#1 Whatsername

Posted 21 January 2013 - 11:00 AM

Not to sure if I am in the right place. I am a bit new to this.

My DH and I want to start TTC this year however I am on a lot of anti-epileptics. 2 of which are quiet new on the market and not much research has been done in regards to what impacts these particular drugs have on fetus'.

I am really unsure what to do. The epilepsy has been hard to control which after 8 years I am finally stable enough to start thinking about having a baby and if I stop my medications there is a high chance I could relapse, start having seizures again and that would be horrible if it were to happen while I was pregnant. On the other hand the thought of taking medications that could too put a baby at risk frightens me.

I have a great Neurologist who is  very supportive but will not advise me on what to do, only provide me with all the answers to my questions and concerns, understandably so, because ultimately it is our choice either way.

My DH and I are very frightened about making this decision. Is there anyone out there who has been in a similar circumstance?


Edited by Chelli, 23 January 2013 - 09:31 AM.
Altered thread title

#2 Isolabella

Posted 21 January 2013 - 02:54 PM

My sister is epileptic.

With her Neuro she agreed that the risk of medication was the lower risk when compared to the risk of seizures. As it was PG hormones did impact her and she did have some seizures during PG.

It is a hard decision to make.

Eta my sister has a healthy 15mo and is TTC #2

Edited by lsolaBella, 21 January 2013 - 03:03 PM.

#3 CFMummy

Posted 21 January 2013 - 03:00 PM

Hi im epileptic and have 2 girls. I was told to take a hight strength folic acid for at least 3 months before TTC then all the way through the pregnancy. I did have afew seizures towards the end of the pregnany but both my girls were born healthy

#4 madammuck

Posted 23 January 2013 - 09:24 AM

Hi there,

My sister is epileptic and has two very lovely, healthy little boys, both of which she conceived while on her meds (albeit lower doses than normal).

She's currently TTC #3, falling pregnant is not a problem but she's miscarried twice in a short period of time, which doctors are attributing to her epilepsy medication.

She's been directed to see an OB who specialises in the care of pregnant women with epilepsy, together they're going to map out the best plan for her. She told me the other day she's feeling emotionally much better knowing that she's rallying a support team of experts around her.

As PPs have said, she's also on a higher dose of folate.

Good luck OP original.gif

#5 Chelli

Posted 23 January 2013 - 09:29 AM

Hi there,
When it comes to medication advice, this must only come from your medical practitioner. Responses to this must only be about experiences with TTC. I have edited the title of this thread to reflect that.

All the best with TTC.


#6 Whatsername

Posted 23 January 2013 - 09:41 AM

Thank You all for your responses. It is good to hear other people's stories and thoughts. It is such a hard decision.

We have a wonderful Neurologist onboard but I don't have anyone else who I can talk to about all this.

Thank You original.gif

#7 Whatsername

Posted 23 January 2013 - 09:46 AM

QUOTE (CFMummy @ 21/01/2013, 04:00 PM) <{POST_SNAPBACK}>
Hi im epileptic and have 2 girls. I was told to take a hight strength folic acid for at least 3 months before TTC then all the way through the pregnancy. I did have afew seizures towards the end of the pregnany but both my girls were born healthy

I have been told to start on high strength folic acid just incase of any unexpected surprises however that has not happened.

Do you mind me asking if you were medicated throughout your pregnancy? Also, did you have natural or elective C-sections as I usually have seizures after being tired, forgetting medications and stressful situations. I really want to try a Natural birth but have all these other things to think about.

#8 suline

Posted 23 January 2013 - 09:53 AM

We have a wonderful Neurologist onboard but I don't have anyone else who I can talk to about all this.

Can you ask your GP for a referral to a high risk or feto-maternal specialist obstetrician for a pre-conception and pregnancy planning meeting. I would guess it would be through the largest maternity hospital in your state (sorry, not sure where you are located) Im guessing they will have experience with many women having babies with different forms of epilepsy  and medications, and they should be able to liase with your neurologist.


#9 Isolabella

Posted 23 January 2013 - 10:00 AM

My sisters OB worked closely with her Neuro.

My sister was wanting a natural birth. Her OB was OK with the idea, so long as certain criteria were met. Once again it is about what is the lesser risk.

As it was it was all taken out of her hands as she developed HELLP eclampsia (not related to epilepsy) and she had an emerg full GA cs.

Work with your caregivers about what is best for your situation.

#10 CFMummy

Posted 23 January 2013 - 10:01 AM

I had 2 natural births both very fast labours of 1.5 hours and 1/2 hour. I did have a siezure after my 1st while I was showering afterward but DH was sitting in the bathroom with our DD1 so was able to get the midwife imediatly. I will add that I have never had a siezure while holding either of my babies as I could feel it coming and was able to put baby down and move away

#11 Whatsername

Posted 23 January 2013 - 10:06 AM

QUOTE (suline @ 23/01/2013, 10:53 AM) <{POST_SNAPBACK}>
Can you ask your GP for a referral to a high risk or feto-maternal specialist obstetrician for a pre-conception and pregnancy planning meeting. I would guess it would be through the largest maternity hospital in your state (sorry, not sure where you are located) Im guessing they will have experience with many women having babies with different forms of epilepsy  and medications, and they should be able to liase with your neurologist.


    I live in NSW. I haven't been told of this. I have another appointment with my Neurologist in a few months to discuss all medications etc. I would like my Neurologist involved as much as possible as we have a good relationship. He really has been a rock through all the hard times, he is very understanding. I will have to chat to him about this when I see him next.

Thank you so much original.gif

#12 opethmum

Posted 23 January 2013 - 10:06 AM

Hi there,

I don't have classic epilepsy but do suffer from seizures nonetheless, I think that you should discuss fully with your neuro in how to make that happen. I am luckily on medication that helps me and I did not have to stop during my 2 pregnancies. I hope you can find the medication that allows you to TTC.

Since my seizures are somewhat controlled we had to make some tough decisions regarding the welfare of our bubs. My DH and I made the decision that I was not to bathe the kids and left unattended with them near water. When we swim or are near water I make sure that at least one other adult I know is present so can help me if I have a seizure. I do not drive because of this and you will have to figure out whether your region is well stocked with public transport so you can get around independently with the kids and go to mothers groups etc because being isolated with kids is not fun and to rely on your DH and others can be paralysing.

Sometimes you and your DH will have to make tough calls in regards to your seizures and what arrangements you will have to make to accommodate them in the event of pregnancy and potential motherhood. You are going to be a high risk pregnancy and
you will have to have extra monitoring and you might have to have a controlled birth of your little one e.g c section or have heavy monitoring during your labour and if you do seizure during the birth you may have to be prepared to have an emergency c section.

There are so many things to consider and I think with the right advice and right medical team behind you, you could TTC with no problems but you have to be realistic and honest with yourself. Only you know what you can take and you alone will have to live with your choices and if your condition is not controlled and is serious in that you can not guarantee the safety of yourself and a child then you and your DH may have to make a tough call and be prepared to take the steps necessary to make that happen.

I wish you good luck in your journey and I hope you come to a decision you are happy with.

#13 Isolabella

Posted 23 January 2013 - 10:07 AM

CFMummy you are very lucky to know it is coming. For my sister it happens out of the blue. She was very shaken to realise she had had a seizure while holding my nephew. Luckily she was in bed and he was 15m, so he just happily climbed off the bed. That is why my sister is now looking to move into the back half of my folks place. She can not bathe bubs without an adult there and prefers not to be alone with child.

But she is working on it. Her medication ATM is at lower levels, but she does not want to increase levels as she is TTC. A delicate balance sad.gif .

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