Just diagnosed with seizure disorder..pregnant and have questions

[deikkena]

Hi everyone. I'm very new to all of this, so please bear with me if I don't know all the lingo and such.

My name is Nicole, I'm 27 years old and currently 29 weeks pregnant with my second child. I was diagnosed just this past Tuesday (10/30/07) as having a seizure disorder. I have partial seizures and have been having them for a good 6 or 7 years, but had never been diagnosed because I didn't realize that's what was happening to me (and therefore never saw a doctor about them).

My neurologist wants me to start taking Lamictal, and because this is all so new to me, and I only know one person who deals with anything similar (except her condition is much more severe), I'm very scared and reluctant to take this medication. I very much wish to breastfeed as it's something very important to me, but I've found little data that shows that taking this medication during pregnancy and breastfeeding is okay.

I am planning on having an at home VBAC (vaginal birth after cesarean), and it was my seizure symptoms that prompted my midwife to require me to see a neurologist in the first place. I had an EEG and MRIs almost two weeks ago. The EEG showed abnormalities, and the neurologist is ordering a second MRI (this time with color contrast) to rule out a "dark area" that showed up the first time around. She thinks this dark area (showed up on 2 different cross-sections of the MRI on the right side) is probably just a venous angioma and nothing to worry about right now, but she just wants to be sure.

I guess I'm just really nervous and confused and frustrated because the timing for all of this is terrible. My neurologist wants me to start taking the meds now to get my body used to it and to prevent a possible grand mal seizure (which I've never experienced before) during labor and delivery. But again, such little data and none of it I've seen says anything about the long-term effects of this on a fetus or child later in life. I suppose this drug is just too new?

I could really use some advice and reassurance and would greatly appreciate all positive comments and suggestions. Thank you.

[brain]

Deikkena

Lamictal 's Homepage

And another place to find more information is
also here too:


Lamotrigine (another name for Lamictal)

Pregnancy Exposure Registry

To facilitate monitoring fetal outcomes of pregnant women exposed to Lamotrigine, physicians should encourage patients, before fetal outcome (e.g., ultrasound, results of amniocentesis, birth, etc.) is known, to register in the North American Antiepileptic Drug Pregnancy Registry by calling ( 888 ) 233-2334 (toll free).

Labor and Delivery

The effect of Lamotrigine on labor and delivery in humans is unknown.

Use in Nursing Mothers

Preliminary data indicate that Lamotrigine passes into human milk. Because the effects on the infant exposed to Lamotrigine by this route are unknown, breastfeeding while taking Lamotrigine is not recommended.

If you scroll about half way down you will see it.
Hope this helps

[Bernard]

Hi Deikkena, congratulations on your baby and welcome to the forum.

There was a period of time where Lamictal/Lamotrigine was considered to the be the "safe" anti-epileptic drug (anti-epileptic drug) for pregnant women. However, it's now known to cause a higher incidence of cleft palate/lip when taken during the first trimester.

I would ask the doc what his estimate is of the chances that you have a tonic clonic (tonic clonic or grand mal) seizure during delivery really are and compare that against the risk of birth defects. Or perhaps wait until the second trimester to start on the drug.

Stacy (my wife) gave birth to our second child while she was taking Depakote/Epilim/sodium valproate. She was uncontrolled (the drug wasn't working effectively) and having tonic clonic seizures once every week or so while the baby was in utero. She did not have a seizure during delivery and #2 came out just fine.

If you do decide to take an anti-epileptic drug, you might consider registering with the AED Pregnancy Registry. They are collecting data on the correlation between anti-epileptic drugs and birth defects.

[deikkena]

Hi Deikkena, congratulations on your baby and welcome to the forum.

There was a period of time where Lamictal/Lamotrigine was considered to the be the "safe" anti-epileptic drug (anti-epileptic drug) for pregnant women. However, it's now known to cause a higher incidence of cleft palate/lip when taken during the first trimester.

I would ask the doc what his estimate is of the chances that you have a tonic clonic (tonic clonic or grand mal) seizure during delivery really are and compare that against the risk of birth defects. Or perhaps wait until the second trimester to start on the drug.

Stacy (my wife) gave birth to our second child while she was taking Depakote/Epilim/sodium valproate. She was uncontrolled (the drug wasn't working effectively) and having tonic clonic seizures once every week or so while the baby was in utero. She did not have a seizure during delivery and #2 came out just fine.

If you do decide to take an anti-epileptic drug, you might consider registering with the AED Pregnancy Registry. They are collecting data on the correlation between anti-epileptic drugs and birth defects.

Hi Bernard, I actually mentioned in my introduction that I'm 29 weeks pregnant (so, third trimester).

I appreciate the information though. I'll take a look at it all!

[Bernard]

lol... that's what I get for skimming.... this forum is getting too busy and I don't have time to read every post as carefully as I'd like.

[deikkena]

lol... that's what I get for skimming.... this forum is getting too busy and I don't have time to read every post as carefully as I'd like.

No worries. I can understand!

[deikkena]

btw, I just realized you are in Friendswood. Small world, eh?

[Bernard]

Yes, it really is.

[brain]

If the world shrinks ... Y'all would be a block
away and we'd have block parties!

[deikkena]

^hehe I actually used to live in Tampa about 5 years ago or so. It was a short-lived stay though.

[brain]

^hehe I actually used to live in Tampa about 5 years ago or so. It was a short-lived stay though.

How short? Did you measure it?



I'm in Countryside/East Lake Area.

[deikkena]

^har har

I actually started off in Winter Haven with a few friends, then moved to Tampa..I was there for such a short period of time I don't even remember what the area was called. I just remember it was very near a university..

btw, after careful consideration, I decided to start the Lamictal last night. I chose to take it at night to help lessen any possible side effects. I'm on the 5 week starter pack, so taking 25 mgs/day for 2 weeks, then up to 50 mgs/day for 2 weeks, then 100 mgs after that.

[jkj1995]

Hi Deikkena,
Just thought I'd say "Hello" This forum is full of friendly people with lots of useful information. I'm glad I found it

[deikkena]

^Thanks! Nice to meet you. So, what's your story?

[RobinN]

Welcome Deikkena -
Congratulations! How very exciting, and I am sure a bit frightening. Hard when it doesn't play out the way you expected it to. I am sure you are watching your nutritional intake, however there are a lot of threads here that will point out that it is much more important now that you are starting the medication. Diet and nutrient level has been shown to play a huge role in this disorder.

Take care of yourself, and see you around CWE

[deikkena]

Thanks for the welcome Robin. I've been trying to read up on stuff in here in my free time (which I have very little of right now, especially without interruptions!). I've learned a lot, but I know there's lots more to learn!

For anyone that's on Lamictal, is decreased appetite common? I've found myself just really not hungry or having a desire to eat much of anything, even though I'm on the starting low dose.

[RobinN]

For what it is worth.. my daughter was on it for a while, building up to therapeutic dose and she was losing weight. Don't take that as research but we both noticed it. She had to stop due to side effects such as severe muscle aches, fever, sore throat.
I have found this site to be helpful to see what others are experiencing with new meds:
http://www.askapatient.com/
It is a lot to take in, but you can get an overview.

[Elisa]

I have found Lamcital to be weight neutral, but I have heard others say they have lost weight on it. Most of the time your system with get used to the med. and any weight loss will stop with time.
Hang in there.

[jkj1995]

I was diagnosed with Epilepsy as a child (had terrible grand-mal seizures) and put on Dilantin for 5 years and eventually grew out of it. When I was 20 I got married and had a beautiful daughter and the E returned but I didn't know that is what it was until a while ago. Now I'm 31 and thru all the reading and research I know that it's been with me since I've had my baby. I've had probably 40 unexplained "events" in my sleep, from cuts to bruises to waking up on the floor but epilespy never crossed my mind until last Feb when I had 2 seizures @ my in-laws. Went to the dr. and they ran tests & said that the E was back. I was put on Depakote but had bad reaction after 2 mos. so switched to Topamax and have had 3 seizures since. I am currently w/o insurance cause hubby took better job so when the new insurance takes effect I'm gonna try to change meds. That's my story! My daughter, thank God, didn't have E, but a mild tic disorder and she takes a daily magnesium supplement and the tics are all but gone

[RobinN]

Have you considered magnesium for yourself?
There is some great information here to read:
Magnesium