lamotrigine, epilepsy drugs and birth defects

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Bernard

Bernard

Your Host
Administrator
Benefactor
Messages
7,622
Reaction score
966
Points
278
Pregnancy for women with epilepsy can be difficult because the drugs they must take to control their seizures have been associated with a three-fold risk for birth defects.

The newer drug, lamotrigine, introduced in the last decade, appears to reduce the risk for birth defects to 2.9 percent, which is similar to the 2-to-3 percent risk for the general population, the study reported.

...

What's more, 22 percent of the children whose mothers had taken valproic acid while pregnant had IQ scores in the extremely low -- or mentally impaired -- range. In the general population, only 2 percent to 3 percent of children would be likely to fall into this category, said the researchers, from the University Department of Neurosciences in the Walton Centre of Neurology and Neurosurgery in Liverpool, England.
Click to expand...

Newer Epilepsy Drug Cuts Risk of Birth Defects - Forbes.com
 
I took Dilantin and Tegretol with my pregnancies. My youngest daughter is dx'd with "Fetal Hydantoin Syndrome." With her, this amounts to profound mental retardation and autism. She's also dx'd with ADHD.

Wish I'd been on a different med when pregnant with her, but......well, hindsite.

Here's a page I have for her: http://www.geocities.com/enchantedforest/Dell/9044/elizabeth
 
I was on Dilantin and phenobarbital when I had my second child and was really lucky that she wasn't harmed. Before I became pregnant with her, I asked my ob and my neuro about birth defects from the drugs and they said that there were none. Wrote to Parke-Davis (doesn't that drug company name date me?) and asked them too. They told me that there were no problems at all. My daughter was born developmentally delayed (speech/language and gross motor skills). She didn't walk or talk until she was almost 2 1/2 but, once she outgrew the drugs or the drugs finally wore out of her system (never knew which), she really took off. When she was 2, Parke-Davis lost a $6 million lawsuit to a couple whose child was born without eyeballs due to Dilantin. Turned out that Parke-Davis had known of the dangers all along and had just kept the information to themselves. After I finished kissing my daughter's beautiful eyes, I called the ob/gyn and had myself sterilized two weeks later.
 
Hi Salsa, welcome to the forums. Elizabeth is adorable. I enjoyed your analogy with the trip to Holland.

Birth defects may be the most devastating side effect from drugs that I can think of. It's good that information is much more accessible these days.
 
I count myself very lucky that I have two very healthly children. My son I was on Dilantin, and very large amounts by the end of the pregnancy. ( I was siezuring two to three times a day by my third trimester) He believe it or not it "gifted" , a straight A student. My daughter was a "surprise", and I was on Dilantin and Felbatol. At the time they new nothing about Felbatol and pregnancy, and I was told to abort. I tried to do it 3 times, just couldn't do it. I took my chances, I knew that I would love her no matter what. She turned out just fine, @ 9lbs 1oz, she does stuggle in school, and I never know if that has to do with the meds or not.
I count my lucky stars every day.
Elisa
 
That's interesting, Elisa. I have two children too. With my first child, I hadn't been diagnosed yet so it was a drug free pregnancy. My son is severely dyslexic with a moderate to severe speech/language learning disorder that he struggled very hard over the years to overcome. My second pregnancy was on Dilantin and phenobarbital with the developmental delays in my daughter that I already spoke of. Like your child, she too is gifted. Although, due to the delays when she was a baby, our school system said that she was severely retarded and probably autistic, once the drugs wore off, she took off like a rocket. Graduated #1 in her high school class of 250. 1600 SATs. Graduated summa cum laude, Phi Beta Kapp, from an Ivy League college. Good thing that I didn't believe it when they said that she was retarded!
 
pregnancy on drugs and outcome

Dear Lindy and Elisa,

Thanks for posting on the forum. Sorry it's taken so long to reply. I also have two sons. Both of whom are very smart. One is 5 and the other is 19 months. I was on Depakote with one and Zorontin ( I think) with the other. Both boys are a bit hyper at times, but I haven't noticed any severe abnormalities. I'll keep my eyes open though. Thanks for the information.
 
Hey Sweetie, you were not taking any meds with the first child. You were 4 years seizure free at that time. You took Zorontin before I met you.
 
Hi I was on Tegretol with my first child now 15 and Tegretol Retard with the 3rd child now 11.Hazel aged 15 has Complex Partial Epilepsy,Aspergers,Learning Difficulties,Asthma & possibly ADHD.Zack aged 11 has Aspergers,Learning Difficulties,Asthma,ADD both had speech problems and delayed development in their early years.My 14 year old daughter Kim has Asthma but has no other problems,my 7 year old son Jake has Asthma & Slight Learning Difficulty but is slowly over coming this.Take care luv Juliexx
 
I admire your courage, girls!

My partner and I decided not to have children. We just didn't want to risk. You can call us selfish but we prefer to have Axa OK than have a child.

My seizures are connected with monthly hormonal changes and we haven't got any strong enough assurance that with the changes during the pregnancy my condition won't get worse. Also, we were afraid that something would be wrong with the child.

Since we haven't had a really strong urge to become a parents we decided against having a child by common consent.

Axa
 
As much as I hate the deceptiveness of the drug companies when it comes to side effects and the possibility of birth defects, I am glad that I didn't know and went ahead with our second child. However, as soon as my eyes were opened, I did have myself sterilized so I can see why you made this choice, Axa. Besides, if you didn't have a strong urge to become a parent, it's better not to do it. I have a friend who was talking about having a child with his wife because they wanted "the experience". I told him that he was crazy - having a baby is an experience that lasts the rest of your life and isn't something that you can just do and then go on to something else.
 
If I were without E and especially without AED therapy, we would decide for a kid. But when we were browsing through the different epilepsy forums, we got an impression that there were just a little to many moms with E who have children with this or that difficulty & illness.

Since we were a little bit scared and wanted some more reassurance from ob/gyn and neurologist then we really got, we just didn't want to risk.

Because all those years it was me who took care about contraception my OH decided to take his part and went to vasectomy. (For all of you who are thinking about some "definite" sort of contraception: he says it's really nothing to be scared!) I think this was really nice gesture on his part.

Best

Axa
 
Looks like Lamictal / Lamotrigine interferes with the pill (oral contraceptive):
Drug maker GlaxoSmithKline has issued a "Dear Doctor" letter advising that its anti-epilepsy drug Lamictal (lamotrigine) can reduce the effectiveness of oral contraceptives.

New data have demonstrated an interaction between combined oral contraceptives and lamotrigine which could lead to reduced effectiveness of hormonal contraceptives, a revised product label states.
Click to expand...

Lamictal cuts effectiveness of the pill
 
Felbatol & Pregnancy

If there is anyone out there who knows of (or can direct me to) any efffects on taking Felbatol during pregnancy I would be immensely grateful. Coming off of or changing my meds is not an option. I was recently married (Nov. 1, 2008) and my husband and I would love to have children. I do know that Felbatol comes out in breastmilk but that's about it. Please help me!!!

Sara
 
Well, from what I found it's a class C drug...which means basically that there is no evidence of it causing birth defects...but then, understand that that was the same for lamictal until just recently when they found that there was a higher chance of cleft palate. If you want children, then talk to your neuro and start taking a folic acid supplement right now. My neuro told me 5 years ago to take folic acid...I take 800 mcg. per day..as well as what's in the prenatal vitamin. Before you start panicing about birth defects, understand that just because you take AED's does not mean you're going to end up with a child with a disability. For example, my med, Dilantin only causes problems in about 10% of pregnancies. That means 90% are perfectly healthy. My smoking (I quit...) probably caused more complications than my meds...If you panic about every med or thing that you eat and drink, you're going to end up stressing out. I'll give you the same talk my neuro and my ob/gyn gave me.

1. There is NO such thing as a 100% safe med. (And that includes aspirin....)

2. The stress of worrying is going to cause more harm than anything...so go home, relax, and enjoy your pregnancy.

I'm not saying play fast and loose. What I'm saying is just make sure that you use common sense when you get pregnant. Do what you can. Take your folic acid (starting now.), eat healthy, avoid smoking and drinking alcohol, have fish 1 to two times a week, and make sure you stay away from too many sweets or caffeine. Avoid stress, and make sure you stay fit. Good luck! :)
 
Actually, I'm not pregnant yet. I've just been told for over 1/2 my life that I can't get pregnant accidentally and that I need to consult a geneticist first. As for Felbatol being a class C drug, that means nothing because they don't know ANYTHING. I'm serious. I called the pregnancy drug people and they'd never even heard of Felbatol, nor was it in their computer system. So far my mom (the women has amazing skills when it comes to ferreting out information) has only found 9 cases of pregnancy in N.America/Canada. 3 were terminated (undisclosed reasons which means it wasn't the medication), 3 were miscarried, and 3 were normal births with no follow-up information. That doesn't give us any long-term effect information though (developmental, etc.). Not to mention that 9 is an extremely small number. And of course the drug company itself has no info.

Basically, it was almost pulled off the market in late 1993-early 1994 right after the FDA approved it because of the aplastic anemia cases and it's been blacklisted as a drug ever since as a last resort. In other words, unlike other AED's there is not the usual 15 years worth of data that has accumulated.

I know there is no such thing as a "safe" drug but I don't have the option of coming off my meds and I want to make sure Felbatol isn't like Accutane (which you are absolutely NOT allowed to get pregnant on because of the gross birth defects it causes).

Otherwise, I've already started the folic acid (Rx from my neuro), don't smoke, and I'm a vegan so I eat pretty healthy already.

Sara
 
Trileptal?

Super Moderator, do you have any information about Trileptal and pregnancy? My last doctor that I had basically made me think I would give birth to a child without arms or legs.

I moved to Sweden about four months ago (the land where they really dislike medication) and the neurologist that I just visited here said that trileptal was actually the best thing to take if I'm pregnant - in low doses and with folate. He said also what you said about no really good studies in women existing. I'm so confused by what I've been told and all I want (as any woman wants) is to give birth to a healthy child when I decide to conceive (if I can). Is there anyone out there who took trileptal in pregnancy?
 
slglaser said:
Actually, I'm not pregnant yet. I've just been told for over 1/2 my life that I can't get pregnant accidentally and that I need to consult a geneticist first. As for Felbatol being a class C drug, that means nothing because they don't know ANYTHING. I'm serious. I called the pregnancy drug people and they'd never even heard of Felbatol, nor was it in their computer system. So far my mom (the women has amazing skills when it comes to ferreting out information) has only found 9 cases of pregnancy in N.America/Canada. 3 were terminated (undisclosed reasons which means it wasn't the medication), 3 were miscarried, and 3 were normal births with no follow-up information. That doesn't give us any long-term effect information though (developmental, etc.). Not to mention that 9 is an extremely small number. And of course the drug company itself has no info.

Basically, it was almost pulled off the market in late 1993-early 1994 right after the FDA approved it because of the aplastic anemia cases and it's been blacklisted as a drug ever since as a last resort. In other words, unlike other AED's there is not the usual 15 years worth of data that has accumulated.
I know there is no such thing as a "safe" drug but I don't have the option of coming off my meds and I want to make sure Felbatol isn't like Accutane (which you are absolutely NOT allowed to get pregnant on because of the gross birth defects it causes).

Otherwise, I've already started the folic acid (Rx from my neuro), don't smoke, and I'm a vegan so I eat pretty healthy already.

Sara
Click to expand...

Felbatol was not taken off the market in 93 or 94 and is still on the market. I was put on it in 93 and took it all throughout my 1st pgncy, along with Depakote.
When my dh and I had decided to have another, we went to my neuro and he took me off the Felbatol and put me on Depakote ER and Lamictal together. He said it was 'safer' that way and that Depakote didn't have too much of a risk to give the baby birth defects. What a joke! My youngest daugher is now almost 5 and has many developmental delays, including speech, gross and fine motor skills and physical delays, (she didn't walk till she was 3.) Now we are having to get her eyes checked out because one of them doesn't track like it's supposed to. It's not a lazy eye, it doesn't ever line up with the other eye like it is supposed to.

My advice to anyone who is thinking or even able to get preg., check out the AED Pregnancy Registry. When you do get pg, contact them and they can take a history of all your meds and any probs during pgncy and after the baby is born. They document all cases and get medical records from neurologists and dr.s that you see. EVERYTHING is confidential and you don't have to participate in anything you don't want to.
 
You must log in or register to reply here.
Back
Top Bottom