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UPDATED: Fri, 05/01/2009 - 2:20pm

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skyesmom
skyesmom

Keppra Questions for Pregnant Folks...

Hey everyone!  I'm a first timer to this site and this experience.  I am 31 and 14 weeks pregnant with my second child.  Ten years ago, when I had my first child, I had never had a seizure a day in my life.  All the sudden on a hot summer day almost 4 years ago I had my first grand mal seizure, falling down two flights of concrete stairs and being rushed to the ER by paramedics!  Ever since then I have experienced seizures off and on with little to no warning.  My meds changed quite a bit in the beginning.  It got to a point I was having a seizure once a week and knew the ER dr.'s by name!!!  Finally about a yr or so ago I stabilized on Keppra (750mg BID).  I also started folic acid about a year ago just cause it's good for women!  When I found out I was pregnant with this one, I was immediately placed in the high risk category.  Oh yeah did I mention I am hypoglycemic and my sugar likes to drop into the 30's with NO warning (no link to the seizures...I've been tested.  Oh yeah I am NOT diagnosed as an epileptic either??!!)!  What's even scarier is that I can still function with it as low as 38!  Anywho...my nuero doc was tapering me off the Keppra b/c I had been seizure free for awhile she thought we'd give it a whirl!  A week later in the course of 15 hours I had two grand mal seizures!  Luckily the second one I was already in the hospital.  I am now back up to my 750mg BID but scared out of my mind.  Everything I read it seems like a crap shoot.  Some ladies have wonderfully healthy bundles of joy while others aren't so lucky.  I have even gone so far as to make an appt to terminate the pregnancy but couldn't go through with it.  I am having a level 2 ultrasound at 20 weeks and found a place close to where I live that will still terminate at 20 weeks if I so choose but I think the stress of waiting another 6 weeks, gaining weight faster than an olympic swimmer, and having ZERO control over my anxiety and emotions is killin me!  HELP!!  I think I just a friendly ear....I don't mind hearing the good, the bad, and the in between.  I just want the truth....thanks for listening...well reading...

By skyesmom at Fri, 05/01/2009 - 2:20pm | 93 views | 19 comments

Recent Comments on this Discussion

I am on Keppra since the beginning of my seizure a year ago. My Doctor put me on 2000mg per day because I am trying to conceive. All my doctors told me to stay on Keppra. It should not affect the baby. It is better to avoid a seizure. During a seizure you can hurt yourself and hurt the baby. So keep taking your medication, get your folic acid and multivitamin and you should be fine. Eat healthy.

Being a future mum is very emotional, so just be calm and rest a lot. Enjoy your little miracle.

Best of luck and breathe,

 

apavar...

Skyesmom,

I hope you're still hanging in there. I am 27 years old and I've had epilepsy since I was 12 years old. I do not have children yet, but my fiance and I have been family planning, researching our options, and, of course, worrying. It also took me several years to find the right medication. I went through middle and high school trying different medications and suffering their side effects. I had seizures in all kinds of places- the pool, on my bike, at home alone on the stairs. Thankfully, I was stabilized with Depakote ER for several years during college. As I got a bit older, my neurologist recommended that I change to Keppra just in case I ever decided to have children. I was hesitant to make the change, but my doctor is phenomenal. Children were the last thing on my mind at the time, but he was smart enough to plan for me- AND recommend the safest AED for pregnancy. Now that I'm thinking about kids, I've talked with my neurologist and OBGYN about the issue. From everything I've heard from all of my doctors, stay on the Keppra!! You and your child are much safer if you keep taking it. I was shocked to read that your neurologist was going to take you off the Keppra. My seizures have been under control for 8 years and I won't even think of lowering my dosage. The best advice I can give you would be to stay on Keppra and folic acid, get a firm understanding of what triggers your seizures, get as much help from friends and family during and after pregnancy (you need your sleep!), and maybe even wear a MedicAlert bracelet. I hope something I've offered has been helpful. Good luck and stay positive! 

squiresc

Hey everyone! I'm a first thesis | theses | thesis writing timer to this site and this experience. I am 31 and 14 weeks pregnant with my second child.
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abbeys...

I'm on 1000mg/day Keppra XR, nothing else. I have read some of the published data on keppra toxicity and pregnancy, compared to other AEDs. I am so worried that when I finally decide to have children, they will be unhealthy. Am I just a worry wart??

And what about breast feeding? Indications say it passes to the baby through breastmilk, and may be a good idea to not breastfeed... any thoughts on this???

My doctor is clueless when it comes to pregnancy stuff, he really isn't much help at all. 

Thanks and God bless you!

sweett...

I'm also 31 and 14 weeks pregnant with my 1st child. I take 1500mg (BID) of Keppra and 400mg of Carbatrol and just recently diagnosed with TLE in 2007. I consulted with both my Neuro and my OBGYN before trying to conceive. Both Dr.'s ran my blood work and everything was perfect. Once I conceived, My Neuro lowered my Carbatrol from 600mg(BID) to 400mg. (It is the most harmful to the fetus based on studies) One thing I was advised to do was to increase my Folic Acid intake; this protects the baby from many harmful effects from the AED's.  From what I understand you are at greater risk when taking more than 1 AED, but as someone else mentioned the seizures can do more harm than the medication in most cases.  I've also been told by my Neuro, that at this time Keppra is one of the safest drugs to be on while pregnant. I know it's hard not to worry, but I put everything in God's hands. 

So far, I've had a few scares with bleeding, but my baby is perfectly healthy. This child is my little miracle. I was told for years by Gyno's that I would never be able to have a child and I needed a hysterectomy due to Endometriosis and severe PCOS (Polycystic Ovarian Syndrome); Prior to my diagnosis, I had 2 miscarriages. So you can imagine how much I worry on a daily basis about miscarriage, I just try not to think about it:-) For years I gave up hope and just became a workaholic. THEN, after 13 years in the Navy I was diagnosed with Adult Onset Temporal Lobe Epilepsy with an unknown etiology??? Forced to retire and move back home to the "middle of nowhere", Kentucky! What the crap, right? I was devistated! I knew for  sure I would never be a Mom. I thought to myself, "I have so many medical issues and have been on so much medication.. it's just not possible." Epilepsy changed my life, but for the better..it just took me a while to realize that. I was so angry and I thought my life was over, but through prayer and a new found faith I was renewed and blessed. I met the love of my life and now I'm waiting for my little Angel to arrive. Guess what??? The Doctors where wrong, all I needed was a little extra push and someone to have faith in me. My Gyno prescribed Clomid for fertility and I prayed like you wouldn't believe... We got pregnant on the first round. So much much for "NEVER"; There's no limit to what God can do. I'm not trying to push my faith down your throat by any means, only share my story. The fear of the unknown is what always gets us. Try not to worry, just have faith:-) I think of my child each day as a blessing from God. I know in my heart that my baby will be healthy and perfect, born just for me, ok and maybe my husband:-) I'm sorry for writing a book, but I hope my story may help in some small way. I'll pray for you and your family. God Bless you!

Angela

angela...

Thanks for your story. It feels great to know there are other women with the same concerns as me... God bless you and your family.

sweett...

You're welcome! To give you an update; I'm now 22 weeks pregnant with a PERFECT baby boy named Brendan Michael! I was on the fence as to whether or not to have the "special" tests ran because I didn't think I wanted to know. I finally decided it would be for the best because no matter what he will always be perfect in my eyes. Guess what??? He was checked for all diseases and deformaties associated with epilepsy and AED's, along with Down Syndrome and he's a perfectly normal "BIG" little boy. My son is already around 13 inches long from head to toe and probably over a pound by now. He keeps me up all night wiggling around and kicking my bladder..it's worth every single minute!!

 

 

angela...

Thanks for sharing your story Angela!  I try so hard to let go and let God, but when I see this little pouch under my shirt, I get scared all over again.  I'm on 750 bid but Keppra is the only seizure med I'm on.  Lucky for me I inheritied a severe depression disorder from my dad and a crazy anxiety disorder from my mom (I say this dripping with sarcasm!).  My anti-anxiety is a Class C drug but the benies definitely outway not having it and using it PRN.  Im also on Cymbalta which seems to be ok with pregnancy.  Knock on wood, no seizures since the back to back ones I had mid April.  I haven't felt my baby move all that much...sometimes days at a time go by without feeling Jr.....have you felt ur angel move yet?

skyesmom

That is one of the FDA's "conditions Essays | Essay Writing | Essay Help of approval". Also, look up the article printed in The New England Journal of Medicine, a highly respected journal, Volume 356:1604-1607 April 19, 2007, Number 16, Title: Approving the Vagus-Nerve Stimulator for Depression, by:Miriam Shuchman, M.D.
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abbeys...

I've felt the baby move a few times, but not much. The crazy thing is that everytime I have an ultrasound the little munchkin is all over the place! So stinkin cute! I was at the dentist yesterday and it felt like he was doing somer saults on my left side..hehe! I couldn't help but giggle:-) I think once it gets bigger I'll feel it more. My Dr. says he/she is very active. You should see one of my ultrasounds...so cute! At first the baby was trying to sleep, so my Dr. shook my tummy and the little guy starting jumping all over the place and looked none too happy (Like his Dad). Afterward, the last thing you could see was the little arm covering his/her little eyes as if he were just worn out. It's the most precious thing I've ever seen! It sucks being High Risk, but we get way more ultrasounds:-) You should get on I-am-pregnant.com. It's a great website! My username is Navy Mommy 2009 if you decide to sign up..Add me! We all share in our ups, downs, worries, etc... It's helped me so much! Like you, I've struggled with anxiety my WHOLE LIFE, also inherited... It's tough, we have to find our "Happy Place":-) I'm so glad we've had a chance to chat! I love talking to other Mommy's to be and it's even better that we can share in Epilepsy too! Please keep me updated.

Angela

angela...

Hi! I am pregnant with my third child right now-28 weeks and on Keppra. Before the pregnancy I have been switched from Depakote ER to Keppra since my second child was born with the syndrome caused by Depakote (Fetal Valproate Syndrome). I also have grand mal seizures since 12 or 13 years old. I never took medication during my teenage years since my seizures were rare maybe once a year. During my first pregnancy I didn't take any meds either and had one grand mal seizure at 12 weeks. My first son is healthy 14 years old. During my second pregnancy I took Depakote ER since I was told- you are on the very low dosage and taking 4mg of folic acid, your ultrasounds perfectly fine and there is nothing to worry about. The whole pregnancy I stayed seizure free since Depakote controls it very well. My second son was born with the syndrome caused by my medication. Now I am on Keppra and honestly paranoid to since my neuro keeps increasing my dosage.  I started on 1000mg and had 2 seizures in one day when I forgot to take my morning dose. My level was checked and the doc increased it to 2000mg. In the middle of April I had another one and now they want me to take 3000mg a day since my level is 15 only and according to a doc it should be over 20 for me. So far I increased it to 2500mg. I am scared to have another seizure and scared to constantly increase the med. With this pregnancy I am followed by my ob, high risk specialist and neuro. I did amnio to make sure there is no chromosomal abnormalities-everything came back normal and my ultrasounds are fine. I don't know why this pregnancy made me so prone to seizures....My advise to you to do all the screenings necessary and don't rush with the abortion. Reg Keppra there is not much research done but from what they have already it sounds much better and promising. I ordered through the doctor documentations from Keppra Registry and reviewed all cases in there-there is no severe structural abnormalities reported so far and it's very promising. Try to stay calm and positive. There is nothing else we can do. Good Luck to you!!!!!!! 

natalya

Have you come across the ketogenic diet or MCT diet?  They're tough but have great results for many people and won't cause detrimental effects on your baby.  You will need to chat to your doctor and find a dietician who knows a lot about the diet.  However, I would STRONGLY suggest that all pregnant mums, ESPECIALLY epileptic mums take high doses of DHA (a form of Omega 3 essential fats) as good fats help with epilepsy as well as with baby's brain and eye development.  Secondly, get rid of all butter, marg and normal oils and use coconut oil instead as this is brilliant for epileptic mums!  Good luck to you all

DrKatie

So far  I have done all the recommended testing by my OB (also a high risk specialist) and my nuero.  When I reach 20 weeks...5 more weeks till then....I'm getting sent for a level 2 sono since my doctor knows how worried I am and she wants to make sure everything looks ok.  I have thought about an amnio...did it hurt?  At point did you have it done?  I have an appt tomorrow and will probably ask about it then.  At the moment, it's my migraines that are kickin my butt along with my low blood sugar. I get similar symptoms when my sugar drops quickly than I do before I have a seizure.  I'm definitely learning to tell the difference!  My nuero is really working hard with my OB to make sure things stay as "normal" as possible.  I guess I'll know in a few months!  Thank you for your insight :)

skyesmom

i am on depakote and carbamezpine and we are going to be trying for children after July  that when we are married so do u think I should mention it to my dr. to switch before we even try to get prego?

 

lifeon...

If I was you, I would chat to your doc about the ketogenic diet - it helped me control my seizures beautifully - I went from up to 180 per day right down to none in 4 months! It doesn't work for everybody, but some people get to come off meds completely.  It's not very easy, but when you see results like that, determnation prevails.  Also increase your omega 3 fats as well as coconut oil - get rid of all butter, marg and regular vegetable oils and use coconut oil instead.  There's lots of literature on how beneficial this can be for epileptics, so good luck and everything goes smoothly for you!

DrKatie

OMG....YES!!!!  I was started on Folic Acid and Magnesium many monthes prior to conception! It's also imparative you tell ur doc right away in case she/he wants to change meds you can do it without a little life inside you to also worry about!  Good Luck :)

skyesmom

I have had two babies on Keppra.  Both babies born healthy, both times I was taking about 1250-1500mgBID along with Topomax 200mgBID.  I also have grand mall seizures, but as I am sure you were advised the sezure can do more harm than the medication.  I went to great doctors who followed the growth and development of the babies, I probably had a ultrsounds about every 4-6 weeks, and stayed in constant contact with my Neuro.  I am all for pro-choice, and it is hard when there is little to no "real" datta on Keppra.

Good luck.

jenn1

This seems to be the general consensus!  There is not sufficient research on Keppra to really know.  In comparisson, I seem to be on a much smaller dose than other folks and I do not take any other anti-convulsant.  Like said in another reply, I'm on other meds that are somewhat worrysome to my docs...but again the potential harm to the baby is worse than taking me off the meds!  I appreciate your time to respond..thanks!

skyesmom

I'm am trying to conceive right now so I may not be much help, but my neuro said that if she were pregnant and had epilepsy then she would want to be on Keppra. I found great comfort in this. Anyway, I hope that you find ways to relax and enjoy your pregnancy! Congrats!
~Cynthia

Cynthi...

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