Seizures and having children

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My husband and I are planning our family right now and I have gran mal seizures and am on 4 anti convulsants-carbamazepine, topamax, lamotrigine and epival and the risks the first two carry to the baby are scaring both of us very much. We're just so confused as to what we should do? Does anyone have any experience with these drugs and having children?

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  • Posted

    Have you spoken to your dr or neurologist about drugs pre conception and during pregnancy?
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    • Posted

      I have, yes. Unfortunately because I was having an increase in seizures in the last year he feels it's unwise to reduce my medications. He's weighing the risk of the mother (myself) against the possible birth malformations of the child. I am finding this hard to accept and just looking for some women who have been on these meds and have or have not had healthy pregnancies. I just need more information to make a decision. My husband and I are so confused right now. Confused and scared would be a better way of putting it. 

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    • Posted

      It is very hard in this situation. I understand your fears. Have you done your own research into the drugs you mention?

      Are you under the care of a neurologist? Do you know pf any neurologists specialising in epilepsy and epilepsy and pregnancy?

      ​Have you joined or logged onto any epilepsy groups or societies?

      ​Have you logged onto any websites of well known Neurology and Neurological Hospitals here or in the USA. In this country there is the National Hospital for Neurology and Neurosurgery Queen Square London. The National Society of Epilepsy. Epilepsy Action. They can send you leaflets and lots of info on epilepsy pregnancy and epilepsy etc, etc.

      There are anti epileptic drugs that are known to cause malformations in babies but I think you need to speak to a dr and neurologist  about this and also several pharmacists.

      I can PM you links to NHS Neuro hospitals if you wish .

      Drs do have to weigh up the risks and benefits but that is part of this life and condition and as frustrating as it is what else can drs do. They have to think of you and your proposed pregnancy.

      Please let me know if you wish any links to London Neuro hospital sending to you.

       

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    • Posted

      Thanks so much for all of your information. I very much appreciate it. I just started seeing a neurologist that specializes in pregnant women who have seizures, my regular neurologist referred my care to him while I work through all of this. 

      I've read several studies about the effects of the drugs on babies but I've yet to go to any hospital websites. I didn't actually know they would offer me more than what I've already been told. I was searching and found this platform so I decided to give it a go. 

      I'm not actually in either the U.K. or the US, I live in Canada. I would however appreciate any information you have that I could go through. I'm willing to read anything to make a more informed decision. 

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    • Posted

      Hi Ali

      Can you log onto the National Hospital for Neurology and Neurosurgery Queen Square London.

      There is also The National society for Epilepsy and Epilepsy Action.

      Have u got an epilepsy specialist nurse/midwife ?

      There are lots of groups and info on the internet as well.

      Epilim is definitely a no go drug but thre may be others tht at contraindicated in pregnancy. I am not knowledgeable enough to say which drug is safe and which is not I am afraid. Please also e mail the hospital for info.

       

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    • Posted

      tried to send u a link to London Neuro and neuourgical hospital but it has gone for moderation. I cannot find a way to PM you
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    • Posted

      I checked my settings and it says I can receive pm's. I'm not sure why it's not working. Thanks for trying. All of your information today has been helpful. I'm definitely going to look into some more sites and hospitals for further reading. 

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  • Posted

    Have you asked about the possibilities of Carbitrol and phenobarb? I took those for 35 years with no ceizures and have 4 very healthy children...
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    • Posted

      Unfortunately my Neurologist will not change any of my medications right now because I have been seizure free for four months. He feels it would be dangerous to step in and start mixing them up at a time when I want to conceive. 

      A part of me understands that, a part of me is frustrated by that. To his credit four months is the longest I have gone in over a year. 

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