Epilepsy/Seizure disorder Moms?

miraclepfGod · October 2015

Hi Moms!
So, I was wondering if there are any moms out there with Epilepsy or seizures and currently taking medication. What is your OBGYN having you do? Seeing a specialist? Etc. debating going of medication? Also, wanted to start a little support group for us as it can well, be a little scary!

Thanks!
Rebecca

mariaalene · October 2015

Yes. I have JME. I took my meds during my first pregnancy. 100mg lamictal 2x daily. Neurologist slowly bumped it up to 200mg 2x. He would have given me more but I was really fighting him. He tested my levels every month. I Have been taking 3mg folic acid daily since August 2013 (6 months before I conceived) My first baby was born with a cleft palate. She also had issues with the lamictal in the breast milk.

This pregnancy I will not be taking my meds till after at least 12 weeks. Hopefully get this baby as fully formed as possible. I'm not seeing my neurologist yet either bc I don't want to hear his crap about it. Maybe I'll see him when I'm farther along

BUT I have not had a seizure in 20 years and I know my trigger (TV) so I wouldn't recommend to anyone that you do like I do. That's just my situation .

New for this pregnancy is ill have to take progesterone shots weekly starting at 16 weeks. And I don't know how that will affect my meds and my body. They have the same effect on each other as birth control does, canceling each other out and stuff. So a little concerned about that....

Also you're supposed to drop your dose to your pre preg dose as soon as you give birth or you can OD. My dumb neurologist didn't know that and 5 days after I gave birth my lamotragine levels DOUBLED. You can't just 1 day decide to double your dose. So that caused a lot of problems too.

It was a long journey last time. And this one is gonna be even longer

amandawk · October 2015

I do and am on Keppra. My neurologist is working with my ob and I will get my medicine levels taken at least once per trimester. I have also seen a high risk ob but I don't think he delivers babies. I am 9+4 and have my first appointment with my ob tomorrow. I decreased my Keppra a little bit before TTC and probably could have a bit more (I haven't had a seizure in almost 12 years), but I didn't want to take the chance. IMO it would be worse for me to have a grand mal seizure than to be on medicine, especially since there is no research that says Keppra causes any problems in the baby. I am also on 2mg folic acid (+400mcg in prenatals).

I like the idea of a support group for us! When are you all due? I'm due May 8th.

mariaalene · October 2015

May 16th

cmeags · October 2015

Hi Ladies!

I have JME too and have been seizure-free for many years. It took about 16 months to get me on the right meds before TTC. Originally I was on Epival (huge no-no - as I'm sure you know of the spinal problem potential) so neurologist switched me to Lamictal but unfortunately caused Steven Johnsons syndrome....severe terrible side effect (it was absolutely awful). Eventually we tried Keppra. Yay Keppra! I have been on Keppra for about 2 years now.

After I had a miscarriage in Dec 2014, I spoke with my first OB and he indicated that no matter what med I was on there is something with us epileptics that studies have shown spinal issues in babies so we need more folic than the regular prenatal. He put me on 5mg daily and I couple that with my prenatal.

I'm going for my first early ultrasound tomorrow (7w6d) and am ridiculously excited!!!

miraclepfGod · October 2015

Thanks Ladies for the resonses! I will have to talk to them about upping my folic then just the prenatals.

I'm kinda a rare situation as I have only had seizures for just over 2 years now as a result of a brain injury from a car accident. I have anywhere from simple/partial to partial/complex with jerking on left side. Medication doesn't control it as I over metabolize my medication. Even on the highest levels of Keppra when I was on that I only reached 1/2 the therapeutic levels and was still having them daily.

They switched me to Clonzopine a year ago and Zonegran (500mg)

We couldn't conceive so I didn't prepare. Now that I am and know the risk it's scary especially clonzopine. I only take 1 mg at night and 1 in am on regular basis in addition to the Zonegran then when I feel one coming I take as needed. Since pregnant I stopped taking and just allow the seizure to happen. I do get auras so I can usually get to a safe place and I know my triggers and take precautions (special glasses bc of light, wear earplugs etc)

I am supposed to see a specialist at 12 weeks but by then most the damage is done too. I have on my own gone down to 400mg Zonagran bc last blood work it showed that I still haven't reached therapeutic levels so I don't see the point in it when they aren't controlling my seizures. I recently, this week cut my clonzopine am dose in half which I can tell the difference.

I have an 8 1/2 month old son to take care of too so I have to weigh it all. It's scary.

I know no one can diagnose or give sound medical advice however would love opinions. I know 2 mom who gave birth to all healthy children while on seizure medication. One was Keppra and the other something else.

I am currently in the middle of week 10. Due May 2nd.

mariaalene · October 2015

The big problem and why they don't want you to have a gran mal seizure is the falling down, you could land on your belly and hurt the baby. SOO if you get the auras that's good (in a way) bc you know to get somewhere safe. You know your body best.

benicode · October 2015

I have partial seizures and also take lamictal and have been on folic acid for years. I'm not controlled though, so it's not as easy to just stop. The risk is worse with a seizure, definitely if you have a grand mal. Not only the falling, but the lack of oxygen in your blood can affect the baby as well. I've had a couple grand mals since I was diagnosed about a decade ago.

I had previously been on topamax and lamictal for years. When I got pregnant last year (ultimately resulting in loss) I was on the topamax and wanted to go off but my doc wouldn't let me b/c of the risks I mentioned above and they didn't want to change my meds post-pregnancy for fear of breakthrough seizures. Two weeks after I got pregnant, they reclassed the med from Class C to Class D, which of course caused me tons of anxiety. This time, I got off topamax before and was about to start Keppra, but I was adamant about being on one seizure drug, because being on more than one also has been linked to increased complications.

mariaalene I've always been fearful of cleft palate b/c of the lamictal (and spina bifida with the topamax last time) but I'm curious how your first born is now doing? It's difficult to still bear this risk given that they say lamictal is the safest medicine for women who are trying to conceive. I luckily have an amazing doctor who is one of the leading in the field and they know all about gradually stepping up your levels and monitoring the dosage and the need to cut your meds in half immediately after birth, and also listen to me and are willing to make adjustments if I have legitimate concerns. My first neurologist was an idiot and an ass. I know that can be frustrating!

Ultimately, this may not matter for me at all this time around b/c unfortunately the doctor does not think this is a viable pregnancy. I have another ultrasound next week to see what's going on, but am preparing for a loss. If by good fortune I am not out this time, I would love to form a support group with other seizure disorder moms!

miraclepfGod · October 2015

I don't get Grand Mals so that's what I am thinking but even today I took half my pill this morning of the clonzopine and had to take the other half bc I felt I could have a seizure anytime and I am alone taking care of my son too.

miraclepfGod · October 2015

I certainly hope your baby is safe and sound!!! Keep us updated please!

miraclepfGod · October 2015

I've been doing some research on clonzopine and usually it's in much higher dosages like 350-600mg even and I am only takin 2mg. I've read cases where babies were born perfectly healthy and one were the babies wasn't but the mother was on another kind of seizure meds too and that was the one the baby was addicting to. I just can't wait to speak to the specialist!!!! Agh!

benicode · October 2015

My doctor has a lot of patients that have had healthy and successful pregnancies so that gives me hope. The risk is always there though.

@mariaalene I have another question for you - did you stop taking your meds all at once or go down on them when you found out you were pregnant? If you just went off of them completely, I'm guessing you didn't experience any breakthrough seizures?

mariaalene · October 2015

Yea I really thought I was in the clear bc lamictal is one of the safest and I'm on a really low dose compared to most ppl. My baby is good in general. She was also born at 28 weeks so we have a combination of problems. She cant nurse or use a normal bottle because she has no suction. Dr Browns makes a special feeder valve for their bottles and we have to use that. When it came time to leave the NICU she still wasn't eating enough so they had to put a gtube in her belly and we were sent home with a feeding pump. Me and her worked really hard at home on using the bottle and after 2 or 3 months we stopped using the pump and only use a bottle. Now we are working on solid foods. It's a little tricky for her. She gets it up her nose and gets really upset. We've been working on solid food for 6 months now and she is doing ok now. She maybe eats 2 jars of baby food a day. So now we are just waiting on surgery. It's supposed to be around feb (1year from her due date). She sees a feeding specialist, dentist, gastroenterologist, and physical therapist each monthly! So that's 1 dr appt every week! After surgery she will also get speech therapy. She just has the cleft palate, not the lip. O and even though she eats with a bottle, they won't remove the gtube till a couple months after surgery. Out of all the things a baby can be born with, this is probably the best case scenario. I mean it's not easy or fun but we are all ok and it could be so much worse. They say she has Pierre robin sequence bc she has a very small chin but idk if I believe that. Small Chins run in my family so it might just be that

O we did have an anatomy scan and no one mentioned cleft palate (I guess sometimes they can see it then) so it was a surprise to us when she was born.

benicode · October 2015

@mariaalene From what I understand, cleft palate is a little more problematic than cleft lip, is that correct? I'm glad to hear she's doing well. I didn't realize that they can sometimes see that abnormality on the anatomy scan - I think I would be worried the whole pregnancy b/c of that. But then again I worry about a lot of stuff.

mariaalene · October 2015

@benicode yea that's what they say, the lip is easier. To me it seems like should be the opposite. but if it's the lip, supposedly they can maneuver their lips to create a seal and get suction. And if it's lip and palate they get 2 separate surgeries. Also with a cleft palate the baby gets more fluid in their ears so they can have hearing problems and need to get tubes. So she'll have tubes put in at the same time as her palate repair. I know my baby is not def but I also noticed she smiles more if we yell at her. They are saying typical hospital stay is like 3 days after surgery and babies only stay longer if they have trouble eating, but she has the tube so even if she has problems we can still take her home and just pump her. Also they are not allowed to have bottles or sippy cups with spouts or straws after surgery bc they don't want anything in the mouth to puncture the roof.so we have to start working on drinking from a regular open cup

So that's everything you need to know about cleft palate babies lol. You've got a pro here. Hopefully none of us will need my experience but if anyone ends up in the same situation it's totally doable. So don't worry too much.

miraclepfGod · October 2015

@mariaalene thanks for all the information! My aunt was adopted and had a cleft pallet and had to go through a lot as a child but no known information on her BP so don't know why. Shes perfectly fine now and as a kid. Really can't tell unles you knew what to look for and even then you can't tell. I don't know all my Grandparentd went through and that was over 50 years ago so things have become much more advance now! I hope we don't need your wisdom but it's good to know you are here and sounds like you are an amazing Mom! Bless you both.

mariaalene · October 2015

@benicode sorry I missed this part of your question. I just stopped taking them. No tapering down. I might pop one here and there. In the 8 weeks I've been pregnant I think I've taken it 8 times. Like if I feel extra crappy. In 2005 I stopped taking it for 2 years bc I went away to college and was too lazy and I was fine (and drank heavily too). But I wouldn't recommend it. Lamictal can be very dangerous especially when stopping or starting. Listen to your Drs advice. You know your body best

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