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Any mums with epilepsy?

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  • Any mums with epilepsy?

    I just found out i am pregnant and i am so nervous to point of not sleeping!!! I have probably 6 seizures a week sometimes none. I'm petrified, what if I hurt my little baby I have tried every medication combo possible but nothing has worked so far with an arrogant specialist (waiting to see a new one). Whenever I mention something she brushes it off. I feel like I'm being selfish having a baby with this condition. My partner says it doesn't matter now or 10 years from now you could still have seizures. (I have petite mal btw) sorry if this is long!!

    Any help or suggestions on how you coped would be great

  • #2
    Epileptic and TTC

    Hi monnie24

    I too have epilepsy and am TTC. Just wondering how your pregnancy has been since this post? How do you plan to deliver?

    Wishing you all the best!!!

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    • #3
      Hi I have epilepsy and have 2 girls. I had a few more seizures towards the end of my pregnacys. I had vaginal births with no pain relief. Both girls have no complications from me taking meds and I breastfed both (1st for 7 weeks 2nd for 9 months).

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      • #4
        Hi sorry I didn't see your posts!!

        I'm at the hoe stretch now.. Few complications my seizures decreased for about 5 months (I had none) then in one week I had 2 grand mal (VERY rare for me!) I. Booked in for a c section delivery this is my choice along with obs etc. I guess everyone's epilepsy has different triggers mine is

        Sleep deprivation/anxiety/stress
        Food
        Missing meds (which I'm terrible for) during the preg I got my meds Webster packed because I figured I don't want to be very tired and going 'ill be okay until tomorrow etc' and then it's all there organized!

        My neuro has given me a plan-
        Breast feed & DP do bottle feeds at night (me express) so I get a full nights sleep etc. change nappies on floor etc and when feeding try and have supervision. I don't have controlled epilepsy Mine is crap! So this is what I have to do I'm hoping I will adjust and make my 'own' plan lol.

        Good luck and let me know if you want know anything else.

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        • #5
          Epilepsy and TTC

          Thanks monnie24 and AliG. Can I ask what meds you guys are on? I know some are considered safer than others.

          Thanks for sharing, AliG it is great to hear of your success with 2 babies!

          fingers I have good luck too

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          • #6
            Im on topamax its the only on I dont have bad reactions to

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            • #7
              I take !

              Keppra
              Topomax
              Zarontin
              Frisium

              All safe during preg I don't know if you have spoken to doctor yet but maybe start taking megafol (stronger doses than in the pregnancy vitamins)

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              • #8
                I have tried to pm you bebe! But I can't seem to!

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                • #9
                  I have epilepsy but very mild. My triggers are photosensitive. I have myoclonic sezuires so I felt I was safe to cease meds altogether during pregnancy and not drive. Good luck. Thery're are heaps of Mummies with epilepsy- I'm sure you'll be fine.

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                  • #10
                    Originally posted by monnie24 View Post
                    I take !

                    Keppra
                    Topomax
                    Zarontin
                    Frisium

                    All safe during preg I don't know if you have spoken to doctor yet but maybe start taking megafol (stronger doses than in the pregnancy vitamins)
                    Hi monnie24,

                    sorry I don't know how to PM - new to this place!!! Already taking megafol and elevit, so hopefully doing all I can to make a healthy strong baby! What dose keppra are you on? You're on quite a cocktail!

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                    • #11
                      1000mg day & night. My seizures improved until I wasn't getting much sleep (being bigger/toilet during night) which was strange I thought.

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                      • #12
                        Originally posted by monnie24 View Post
                        1000mg day & night. My seizures improved until I wasn't getting much sleep (being bigger/toilet during night) which was strange I thought.
                        Hi Monnie, just wondering how you got on with your baby? Hope you are well and those pesky seizures are staying away!!!

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                        • #13
                          Hello!!!

                          Bubs is 6 weeks old now I had her early at 38&4 because my seizures were more frequent (petite mal) I think due lack of sleep. But since then none which is my world record! Bubs has a heart murmur which I of course think is due to my medications.

                          How are you going?!

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                          • #14
                            Originally posted by monnie24 View Post
                            Hello!!!

                            Bubs is 6 weeks old now I had her early at 38&4 because my seizures were more frequent (petite mal) I think due lack of sleep. But since then none which is my world record! Bubs has a heart murmur which I of course think is due to my medications.

                            How are you going?!
                            Congratulations!!! Great news about your seizures, is the heart murmur a minor problem? Does it require treatment? How are you finding the sleepless nights? Are you breastfeeding with the meds?

                            I'm good, we started trying last month, but no luck yet. Fingers crossed for this month!!!

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                            • #15
                              Hello ladies, thank you so much for sharing your experiences and yours and your bubs conditions.

                              Your kind advise, comments or further update with your situation will be very much appreciated as I'm planning to start a family and I've been on keppra for 7yrs. My doc said there is no thorough research on keppra's effect on babies during and post pregnancy. Other than monnie24's bub had heart murmurs (which I hope is getting better), any other bubs had conditions that maybe related to the meds you are taking?

                              I've only had seizures in my sleep (mostly when I miss my meds n lack of sleep).

                              Also, im concern abt breast feeding while on meds... Please share your thoughts and experience?

                              the pharmaceutical companies are not being very helpful at the moment with my enquires...

                              looking forward to to hearing from you!

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