Epilepsy Ontario :: Pre-Pregnancy Councelling Checklist

Pre-Pregnancy Councelling Checklist

More than 90% of women with epilepsy have normal, healthy babies. Optimal care requires pre-pregnancy counselling.

Many women living with epilepsy are still erroneously being advised not to have children or are being rejected by health care providers who simply do not want to care for them. It still not well-accepted in our society that women with epilepsy can bear healthy children and be capable parents. Nothing could be farther from the truth.

The key to a successful pregnancy term and postpartum adjustment relies on strong communication and a supportive link between the mother and her health care provider(s). If you are pregnant or considering pregnancy, it is necessary to consult your physician or health-care provider about the key issues listed below. Keep in mind when discussing the issues below that you should make the decision that is best for you.

Access to Care and Support

The misunderstanding of epilepsy and the social stigma of those living with the disorder often leads to feelings of isolation, low self-esteem and sometimes violation. Many women with epilepsy or seizure disorders become exposed to acts of violence or sexual assault. Unfortunately, the frequency and intensity of the abuse often escalates when a woman is pregnant.

Many studies have shown that education and counselling involving the entire family structure help to alleviate some of the negative attitudes towards women with epilepsy or seizure disorders. During this time in a woman's life (pre-pregnancy, pregnancy and postpartum periods), a support network would be extremely helpful. For some who do not have the choice to attempt an involvement of her family in these counselling services, try to find at least one understanding relative, or friend, or someone you trust who is willing to advocate for you.

Find an appropriate health-care team, including a combination of the following:
Determine how often you should see your primary health care provider/advisor prior, during and after your pregnancy term.
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Create a support network involving your family, friends, any local support groups for women living with epilepsy, cultural groups and any other important services, such as translation and interpretation.
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Find or be aware of prenatal diagnosis/screening (ultrasound, alpha-fetoprotein test, acetylcholinesterase test via amniocentesis) and pregnancy termination services in your area. Extensive counselling services in this area are important. If a severely malformed fetus is detected, your attitude and beliefs with respect to prenatal diagnosis and options for termination of your pregnancy must also be considered.
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Locate and contact support services for abused women if needed, and disability services to aid in transportation and advocacy issues. Your local epilepsy chapter can help direct you to many of these services.

Pre-Conception and Fertility Issues

Women with epilepsy have fewer children than women in the general population. Their fertility rate is up to 33% lower than average. Furthermore, marriage rates are also lower. Social and familial pressures on women with epilepsy to refrain from having children is a main factor in their lower rate of childbearing. Biological factors may play a small role in the higher rates of infertility in women with epilepsy. The effects of epilepsy, seizures and antiepileptic drugs on fertility are not entirely understood.

FACT: Women with epilepsy show a higher incidence of reproductive and endocrine disorders such as polycystic ovaries, irregular or no ovulation, abnormal menstrual cycle length, early menopause and reduction in fertility compared to women in the general population. This can affect their ability to conceive or carry a child to term.

Note that other factors, including seizure type, seizure frequency and the location in the brain where the seizures originate, may also contribute to infertility. In addition, some antiepileptic drugs (AEDs) may reduce fertility or sexual interest.

FACT: The incidence of miscarriages (spontaneous abortions) is the same for both women living with or without epilepsy; miscarriages are not significantly associated with maternal epilepsy or with use of AEDs.

Chart your menstural cycle. If your periods occur at intervals of 21 days or less, or if they are greater than 35 days apart, discuss this finding with your gynecologist or your primary women's health care worker.
If intermenstrual bleeding occurs (spotting or bleeding between your periods), or if bleeding lasts more than 7 days, consult your gynecoloist or primary women's health care provider.

Fertility rates have improved over recent decades, reflecting better treatment of epilepsy and changing attitudes. Despite the higher incidence of ovulatory dysfunction in women with epilepsy, most are able to conceive.

Lifestyle concerns

Keep an accurate record or calendar of your seizure frequency and medication intake: it can be helpful to both you and your physician. Not only will such a record help you remember to take your antiepileptic drugs, it can also help your physician better evaluate and anticipate the AED levels in your blood.

Discuss any use of other medications (prescription or non-prescription) for other conditions. Understand drug interaction between AEDs and other over-the-counter medications. Do not take any new medication unless it is approved by your health care provider.
Avoid alcohol, other narcotics and tobacco.
Discuss ways to optimize your nutritional status. The diet of the mother prior to conception should contain adequate amounts of folate.
Discuss any poor sleeping habits or problems with your health care provider.

FACT: Certain lifestyle factors can trigger seizures even when a person is taking medication. It is important to try to take control of your life and health in these matters.

Issues Regarding Use of Antiepileptic Drugs

Discuss your currently prescribed type of antiepileptic drugs (AEDs), dosage and treatment regime.

FACT: If you are thinking of having a baby, or if you find out you are pregnant, NEVER discontinue your medication without consulting your health care provider first, even if you have been seizure-free for some time. You will increase the risk for seizure recurrence, which is a greater threat to you and your baby's health.

Discontinue or optimize your drug therapy in relation to your seizure and drug therapy history. Monotherapy (using one AED) is preferred, because the risk for fetal malformations increase with use of several medications. Your physician should try to prescribe the lowest effective dosage.

FACT: If there is a family history of neural tube defects, women taking carbamazepine (Tegretol�) or valproate (Depakene�, Depakote�, Epival�) are advised to find an alternative AED when pregnant. We know little about the safety during pregnancy of some newer medications, such as gabapentin (Neurontin�), lamotrigine (Lamictal�), tiagabine (Gabitril�), topiramate (Topamax�) and vigabatrin (Sabril�). Do not take felbamate when pregnant.

Ask your health care provider of the risk of major malformations, minor anomalies and developmental disturbances in your fetus or infant, taking into account the family history, type and severity of your epilepsy and/or intrauterine AED exposure.

FACT: Malformations develop early in the pregnancy. By the time most women realize they are pregnant, malformations may have already developed. Discontinuing treatment at this point would only increase the possibility of the woman having seizures without reducing the risk of the baby developing a fetal or congenital malformation. At this point, controlling maternal seizures is the first priority. You can monitor the development of your baby through fetal diagnostic techniques.

Know your risk for pregnancy complications such as bleeding, toxemia and prematurity due to AED therapy.
Organize a medical check-up schedule with your health care team in order to monitor your antiepileptic drug levels and routinely discuss any drug compliance issues during pregnancy and after delivery.
Understand that there may be changes in the metabolism of AEDs (phenytoin, phenobarbital, carbamazepine, valproic acid and perhaps lamotrigine) caused by your pregnant state. Your physician or health care provider may periodically adjust your AED dose to prevent seizures as your pregnancy advances.

Supplements to Ensure a Healthy Pregnancy Term and Baby

Folic Acid – ideally, folic acid therapy should begin prior to pregnancy. This will decrease the risk of neural tube defects (severe brain and spine abnormalities) in infants.
Oral Vitamin K should be given at the start of the last trimester of your pregnancy and be given to your baby after delivery. This is to prevent a hemorrhagic (a chronic bleeding) condition for your baby.

Seizures

The most important step toward reducing your risk of increased seizures is to work with your physician to get your seizures under control before you become pregnant. Part of this step will be to take your medication regularly – something you need to do before, during and after your pregnancy. Seizure control should be a top priority for you and your developing baby. The 4-8% risk for major birth defects in infants born to women taking AEDs is small compared to the reported up to 50% risk of fetal death, and maternal illness and death due to maternal seizures.

Discuss your possible risk of increased seizure frequency and the risk of seizure reoccurrence during pregnancy. Seizure complications during pregnancy can lead to maternal injury, fetal injury, infant distress and status epilepticus.

FACT: The mother's seizures during pregnancy, while hazardous for other reasons, do not appear to increase the risk of defects in the baby.

The inheritance risk of someone with epilepsy or a seizure disorder having a child with epilepsy is small.
Understand that seizures during delivery seldomly occur and are usually not dangerous, but they can make your delivery more difficult.

FACT: During labour, a woman's breathing increases. This hyperventilation, coupled with the pain and anxiety of giving birth, can occasionally lead to a seizure. Sometimes seizures during labour may not be related to epilepsy but might be associated with the pregnancy itself. This condition is called eclampsia and symptoms leading up to the seizure are called preeclampsia.

Promptly report all seizures to your neurologist or physician at any point of your pre-pregnancy, pregnancy and postpartum terms.
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Generalized tonic-clonic (grand mal) seizures can be hazardous in pregnancy. They can cause miscarriages and the trauma from falling is a major cause of obstetrical injury. Tonic-clonic seizures place both the mother and the fetus at risk for hypoxia (oxygen deficiency) and acidosis (a blood disorder), both of which can affect the mother's and baby's central nervous systems. Also, generalized seizures occurring during labour can affect the baby's heart rate.

Potential Fetal and Congenital Malformations

Be aware of the risk of major malformations, minor anomalies and developmental disturbances in the fetus or infant, taking into account the family history, type and severity of your epilepsy and/or intrauterine AED exposure.
Be aware of pregnancy complications:

FACT: Whatever the cause of any malformations, they do not occur often enough to support avoiding or terminating a pregnancy. However, if a 6% risk of having a child with a malformation is unacceptable to you, it is important that you make the decision that is best for you.

Defects in the developing child have been reported with the use of all AEDs.

Dysmorphic features (minor anomalies), such as a cleft lip. Children tend to outgrow these features.
Minor malformations:
Major malformations:

The actual cause for the increased risk of defects has not been determined, but there are three strong possibilities:

Breastfeeding and Other Postpartum Issues

When a mother has been taking antiepileptic medication during pregnancy, there is a possibility that her baby will appear sedated during the first few hours or days after birth. The medication most commonly linked to this effect is phenobarbital. After the sedation wears off, some babies will develop withdrawal symptoms. These can consist of irritability (excessive crying, not feeding well, etc.), involuntary trembling, vomiting, poor sucking, fast breathing, and sleep disturbances. One or more of these symptoms may last from a few days to about three months. Valproate (Depakene�, Depakote�, Epival�) used during pregnancy has led to manifestations of withdrawal symptoms as well. Often these small side effects are transient. Psychomotor retardation (slowed activity of the mind and body) is also associated with AED use and it is generally transitory.

FACT: The health benefits of breastfeeding your baby include protection from respiratory and gastrointestinal infections. It is advised by many experts that breastfeeding is quite safe for women with epilepsy.

Your decision whether or not to breastfeed should be based on the consideration of various factors:
There are a few medications that can attain higher levels in human breast milk:
If you're taking just one of these medications, you can still breast feed as long as you watch your baby carefully for any signs of sedation. Certainly if your baby fails to gain weight because it is too sedated to eat, you'll need to stop breast feeding.

FACT: If you are taking both phenobarbital and primidone (Mysoline�) together, you should not breast feed your baby.