Epilepsy Talk

If You’re Thinking Of Getting Pregnant… | November 3, 2019

Years ago, women who had epilepsy were often discouraged from getting pregnant. Today, that’s no longer the case.

Thanks to early and regular prenatal care, more than 90 percent of pregnant women who have epilepsy deliver healthy babies, according to the Epilepsy Foundation.

It’s possible that having epilepsy may make it more difficult for you to get pregnant.  Women with epilepsy have fewer children than women in general. Their fertility rate is between 25% and 33% lower than average. Here are some possible reasons why:

* Women with epilepsy have higher rates of some conditions that can cause infertility. One of these is polycystic ovarian syndrome (PCOS).

* Women with epilepsy are more likely to have irregular menstrual cycles, which can make it more difficult to get pregnant.

* Women with epilepsy are also more likely to have menstrual cycles that do not produce an egg. These are called anovulatory cycles.

* Women with epilepsy are also more likely to have abnormalities in hormones involved in pregnancy.

Despite these risk factors, the large majority of women with epilepsy can become pregnant and carry the baby successfully to term. 

Here are some tips to improve your odds…

Preparing in Advance

Before you try to conceive, you should talk to your neurologist and your obstetrician. Most doctors recommend that women with epilepsy be cared for by a high-risk obstetrician during their pregnancy. Both will want to monitor you and your baby closely.

And starting before you get pregnant, take prenatal vitamins with 0.4 milligrams of folic acid every day, and keep taking them throughout the pregnancy.

Folic acid has been shown to reduce the risk of some birth defects by 60% to 70%.

Also, magnesium sulfate has reportedly been shown to prevent additional seizures. In recent years, doctors have disagreed about whether magnesium sulfate or more traditional anti-seizure medications (diazepam, phenytoin) should be preferred. Obstetricians favored magnesium, while neurologists favored the more traditional approach.

It’s also important to make healthy lifestyle choices. For example:

* Eat a sensible and balanced diet.

* Stay close to your normal weight.

* Exercise regularly.  (Even if it’s just a walk.)

* Try to keep your stress at a minimum.  (I know, easier said than done!).

* Get enough sleep.

* Avoid smoking, alcohol and illicit drugs.  (Duh!)

* And limit the amount of caffeine in your diet.

It’s also a good idea to:

* Plan ahead and optimize medications.

* Try to get on just one medication.

* Recognize possible effects of seizure meds on contraception.

* Do not change AEDs without talking with your doctor first.

Risk Factors

Women who have epilepsy face a higher risk of pregnancy-related complications, including:

* Severe morning sickness  (Welcome to the club!)

* Anemia

* Vaginal bleeding during and after pregnancy

* Premature separation of the placenta from the uterus (placental abruption)

* High blood pressure and excess protein in the urine after 20 weeks of pregnancy (preeclampsia)

* Premature birth

* A low birth weight baby

Medication

According to the Epilepsy Foundation, mothers taking seizure medication, risk birth defects of 4 to 8 percent — compared with 2 to 3 percent for all babies.  

Not much of a difference. 

But the risk seems to be highest when multiple seizure medications are taken.

Yet, without medication, uncontrolled seizures may deprive the baby of oxygen.

Seizures can also increase the risk of miscarriage or stillbirth.  So, it’s important, as you know, to get the right balance.

There are no anti-seizure drugs that are 100 per cent without risk of causing birth defects.

But some anti-seizure medications appear to be more dangerous than others and your doctor may be able to avoid prescribing them.

Here’s what doctors know so far:

* Depakote and Depakene seem to carry the highest risk of damage to the baby, particularly neural tube defects, such as spina bifida.

* Phenobarbital or Depakote during pregnancy may affect future intelligence of the child, but this can occur with other AEDs as well.

*  Dilantin (Phenytoin) and barbiturates can cause cleft lip or palate, or other skull, face, or heart malformations.

*  Depakote (Valproic Acid) and, to a smaller extent Tegretol (Carbamazepine and Carbatrol), are linked to open spine problems.

*  Tegretol can also cause “minor defects,” such as fingernail malformations, or mild facial feature distortions, that often resolve by age five years.

*  Lamictal can also cause  breakthrough seizures during pregnancy. That’s because metabolism of Lamictal — as well as other antiepileptic drugs — increases during pregnancy. This can cause a drop in the level of anti-seizure medication in your system. If that level gets too low, you could have a seizure. But if your doctor prescribes a higher dose of Lamictal to make sure that you don’t have breakthrough seizures, there could be a higher risk of damage to your baby.  So it’s a delicate balance.

The best rule is to use the single medicine that is most effective in treating your seizures, but with some bias toward the newer FDA category C antiepileptic drugs such as: Neurontin, Topamax, Zonegran, Trileptal, Lyrica, Keppra and Vimpat.

But make sure your doc is up to date on all the newest research. Because information about the safety of anti-seizure drugs during pregnancy literally changes from month to month. Which makes managing epilepsy during pregnancy very challenging.

If you have any questions, check with the Epilepsy Foundation.

Pregnancy Registries

Several pregnancy registries track safety of AEDs. Participation is free and the registry will both provide you with information and help the epilepsy community to better understand the safety of AEDs during pregnancy. It’s a good idea to contact one of the registries if you have epilepsy and are pregnant.

A list and links can be found at:

The Antiepilepsy Drug (AED) Pregnancy Registry  http://www.aedpregnancyregistry.org/

North American Pregnancy Registry http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/seizure-medications-and

During Your Pregnancy

You’ll see your doctor often, to check your weight and blood pressure, together with regular blood tests to monitor the levels of your medication. Your obstetrician will, of course, closely monitor your baby’s health. Frequent ultrasounds will track your baby’s growth and development. And depending on the circumstances, other prenatal tests may be recommended.

If you’re taking AEDs, such as Dilantin, Tegretol or Phenobarbital, your obstetrician will probably recommend oral Vitamin K  (5 mg. pills, 2 pills per day) during the last month of pregnancy to help prevent bleeding problems in the baby after birth.  Also, babies usually receive a Vitamin K injection after birth.

And if you have a seizure, don’t panic! Seizures can be dangerous, but many mothers who have seizures during pregnancy deliver perfectly healthy babies.

But be sure to report the seizure promptly to your obstetrician and/or neurologist. He or she may adjust your medication to help prevent other seizures. And, if you have a seizure in the last few months of your pregnancy, your doctor may monitor your baby at the hospital or clinic.

Labor and Delivery

Most pregnant women who have epilepsy deliver their babies without complications.

Women who have epilepsy may use the same methods of pain relief during labor and deliver as provided to others. If you have a seizure during labor, it may be stopped with intravenous medication. If the seizure is prolonged or your labor doesn’t progress normally, your obstetrician  may deliver the baby by C-section.

All of these concerns can seem overwhelming. Yet, although you have to be aware of the risks, the vast majority of women with epilepsy get through pregnancy just fine. Your chances of having a healthy child are excellent, especially if you talk with your doctor early and often, follow the advice you are given, and take good care of yourself.

Breastfeeding

Breastfeeding is good for you and your baby and the benefits usually outweigh the risks from trace amounts of seizure medicine present in the breast milk. Recognize that your baby has been exposed for nine months to the medicine in the placental bloodstream.

AEDs that are highly bound to blood proteins, including Dilantin, Phenobarbital, Tegretol and Depakote don’t have a significant effect on breast milk.  But others, like Keppra, Mysoline and Zonegran, do have measurable concentrations in breast milk.

Rarely, a child may have side effects such as drowsiness or failure to thrive from seizure medications in breast milk and then should be switched to formula feedings.

Caring for Your Baby

If your seizures are not in control, take special care to avoid injury to the baby. Most of this is just plain common sense:

* Try changing the baby’s diaper on the floor.

* Don’t leave a baby in bathwater, on heights, near heat or other dangerous objects or chemicals.

* Find a safe way to carry the baby.  (Lots of moms use Snugglies or baby slings.)

The bottom line is: you can become pregnant, carry a child successfully through pregnancy, breastfeed and be a terrific mother.

Planning is key, since medication changes during pregnancy can be risky.

Keep in close touch with your doctor(s) and do not change medications on your own.

Best of luck to you!

Other Articles of Interest:

DNA Blood Test Gives Women A New Option For Prenatal Screening  http://www.npr.org/blogs/health/2015/01/26/368449371/dna-blood-test-gives-women-a-new-option-for-prenatal-screening?utm_source=npr_newsletter&utm_medium=email&utm_content=20150126&utm_campaign=dailydigest&utm_term=nprnews

Striking a Nerve: Epilepsy Drugs in Pregnancy http://www.medpagetoday.com/Neurology/Seizures/43719

Children born to mothers who took the antiepileptic drug sodium valproate during pregnancy are at significantly increased risk of autism and other neuro developmental disorders.
http://www.pharmacytimes.com/news/Antiepileptic-Drug-Linked-to-Increased-Autism-Risk

New Findings On Women, Pregnancy, Epilepsy http://www.sciencedaily.com/releases/2013/12/131209132444.htm?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+sciencedaily%2Fhealth_medicine%2Fepilepsy+%28ScienceDaily%3A+Health+%26+Medicine+News+–+Epilepsy+Research%29

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Resources:

https://www.mayoclinic.org/healthy-lifestyle/pregnancy-week-by-week/in-depth/pregnancy/art-20048417

https://www.webmd.com/epilepsy/guide/women-pregnancy-epilepsy#1

http://www.uptodate.com/patients/content/topic.do?topicKey=~JqqkRi44op3f4Y

http://highbloodpressure.about.com/od/eclampsia/f/eclampsia-treat.htm

https://utswmed.org/medblog/epilepsy-pregnancy/

https://www.stanfordchildrens.org/en/topic/default?id=epilepsy-and-pregnancy-90-P02474


3 Comments »

  1. This is still a very difficult topic, for me. You seek, I WANTED a child. And I had every right.
    First, having a very mild form of epilepsy, it didn’t matter to the immediate family. I was told *Negative comments ALL My Childhood and adult “life.” Hey. What is family for? *SUPPORT. Not *discouragement. All the adults told me I could NOT have children. I never did anything “wrong.” Didn’t cause trouble. Definitely didn’t use a gun. Only the boys did that when going hunting. Besides. I was a nice child–and daughter. But ALWAYS put down. “Don’t get in the water! You ‘might’ have a ‘blackout!'” Off, my brother goes into the water! Enjoying his self. Not me. I was guarded.

    My mother died when I was 14. “The old man” became “woman crazy” and wanted to move to his larger farm. Sell where I lived, which was supposed to have been *My family inheritance. Not after Momma died! Everything changed. I was told to leave home when graduating high school. So I did. In with my mother’s mom, who favored my brother, J.P. The *First Born–and *A Boy! He moved out to the farm with *his dad and *his dad’s other live-in woman, who was later Willed the entire 196 acre farm, house and all in it! I was disinherited. Left out of The Will.

    EVERY time I went out, Grandma accused me of “having gotten pregnant!” Just like that! Wow. Fast work. So one day, this guy asked me to marry him. I accepted. First, I rode with him to meet his family, in another state: Athens, Alabama. I lived in Richmond, Virginia. I heard Jerry’s dad talking to him about “the other times,” the night before we left. Jerry carried me to Detroit, took my virginity and *Did Not Marry Me! I got pregnant. Well, Grandma’s words finally came to pass. She always kept saying negative words. Though I meant to marry, Jerry “had second thoughts.” But he still got what he wanted. And he refused to marry me! Grandma said: “You have something done or get out of my house! I’m not going to be ashamed by you!” ***To start with, it was an apartment. She was a “Control Freak.” I see this, now. Such a Spirit of Pride.

    Has anyone ever been to the hospital on I Street, in Washington, D. C., where all the Presidents go? I was carried there on August 14, 1972, by Jerry. A day I will never forget. Grandma would not be embarrassed by me. Though she still gossiped about me. And Jerry? He didn’t have to pay child support! Nor did he pay for “The Procedure.” I ***BORROWED that money from my step-grandfather, paying back every *Red Penny! Jerry didn’t even pay for that!

    Oh, how I wish I had known more! But I was always around people who *Put Me Down!
    Now, I am married to a man who refused to have children by “somebody like me.” Little did I know that someone could have been as evil as those from my childhood and young adult life. So–I have no children. “Excuse” given: I have epilepsy. Ladies. Take this from me. NEVER let ANYONE tell you that you CANNOT have a child! If they do, run from them as fast as you can! They are much worse off than one with epilepsy ever will be. We are EACH created in the image of The Most High God. If anyone wants to argue with someone, tell them to do it with The Almighty. You Are A *Winner!

    Liked by 1 person

    Comment by Effie Erhardt — November 4, 2019 @ 2:52 PM

    • What a sad, heart-breaking story.

      And how brave you were not to buckle under such never-ending abuse.

      I admire you and feel sad that you never had a baby.

      I’m sure he/she would have shown the world as much strength and courage as you.

      Like

      Comment by Phylis Feiner Johnson — November 4, 2019 @ 5:05 PM

    • Effie, You’re a very strong woman to have carried on with your life, while endless cruel people kept tormenting you for medical disorder many of us has been forced to live with.
      I admire your resilience to have come a long way to advice & empower victims of Epilepsy from ignorant people robbing them the very basic simple rights & opportunities any women should take for grant, the opportunity for pregnancy & raise their own family.
      My heart goes out for you for all the cruelty you managed to survive.
      I hope many other wonen come to learn strong lessons from your experience & message, standing up for their rights, refusing to be manipulated by cruel people.
      May God provide you the peace of mind you have been deprived for too long.
      Regards,
      Gerrie

      Liked by 1 person

      Comment by BahreNegash Eritrea — November 5, 2019 @ 12:09 PM


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    About the author

    Phylis Feiner Johnson

    Phylis Feiner Johnson

    I've been a professional copywriter for over 35 years. I also had epilepsy for decades. My mission is advocacy; to increase education, awareness and funding for epilepsy research. Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.

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