Inheritance

Is epilepsy inherited?


Possibly, there are a few types of epilepsy that run in families and are inherited. However, there are many cases of epilepsy that occur due to mutations in the individual occurring in their lifetime. In addition, many different life experiences could cause epilepsy, such as a head injury.




What are the chances my child will have epilepsy?


For the average population, only 2 out of 100 people develop epilepsy. If the father is the one with epilepsy, then the chance is only slightly higher. If the mother is diagnosed with epilepsy, then the risk is no greater than 5 out of 100. However, if both parents have it, the chances are still only slightly greater than 5 out of 100.




What types of epilepsy are most likely to be inherited?


People who have generalized epilepsy (one where the EEG pattern shows both sides of the brain involved at the beginning of a seizure) seem somewhat more likely to have other family members with seizures than those with localization-related epilepsy (also called partial or focal, where the EEG pattern shows seizures beginning in a single area of the brain). Parents with a history of generalized absence (childhood petit mal) seizures are more likely to have children with the same condition than those with other generalized seizures or focal seizures.




What are some of the other factors that seem to be involved in inheritance?


1.Age when epilepsy begins — Children of people whose seizures started early in life (for example, before 20 years of age) have a greater risk of developing epilepsy than children of people whose seizures started later in life. 2. Mothers and fathers with epilepsy — Studies have shown that the risk of epilepsy is about twice as high in children of women with epilepsy than in children of men with epilepsy. Research has shown that this is not related to pregnancy or birth complications, maternal seizures during pregnancy, or maternal anti-epileptic drugs during pregnancy. More research is needed to explain this difference. 3. Cause of epilepsy — The risk for developing epilepsy does not seem to be increased, compared with the general population, in relatives of people who have epilepsy caused by serious brain injury that occurs after birth due to conditions such as strokes, brain tumors, severe head trauma or brain infections.




Can epilepsy skip a generation?


Yes, it can. As discussed earlier, most types of epilepsy are caused by multiple genes and environmental influences. Not everyone who carries genes that make him or her more likely to develop epilepsy will, in fact, do so. Therefore, even if the genes are passed on, not every generation in a family will have seizures.




How can I find out what the risk is for my baby to inherit my type of epilepsy?


Ask your physician to refer you for genetic counseling. Specially trained physicians or nurses, genetic counselors, and other health care professionals can help you study your medical history, find out facts about your family history and, if possible, calculate the risk for you and your baby. They may recommend certain laboratory tests to get more information. It’s important to remember that although there is a lot of evidence that genes play an important role in causing epilepsy, exactly which genes are involved has not been identified for most people who have seizures. Studying the families of people who have epilepsy will help increase our knowledge and perhaps, in the future, will lead to new treatments for epilepsy or even measures to prevent epilepsy.





Genetic Testing

Is genetic testing helpful when one is trying to get pregnant?


Yes, genetic testing can help you learn about the risks of your child having epilepsy.




What is genetic testing?


Several different tests can determine the cause of a person’s genetic epilepsy and may help the doctor treat it. These tests focus on either individual genes, groups of genes, or chromosomes.




What are some examples of these tests?


Epilepsy Gene Panel: Analyzes the genes that are most known for causing epilepsy Chromosome Microarray: Studies chromosomes and checks for imbalances that can lead to epilepsy Whole Exome sequencing: Examines your entire genetic code to see if there have been any changes to your genetic structure associated with epilepsy. Targeted testing: Looks for an already known cause in your family of epilepsy




How do they obtain your DNA for genetic testing?


They can use a cheek swab, saliva, blood, or in rare cases a skin sample.





Male Reproduction

Can having epilepsy as a man diminish your chances of having a child?


Yes, in men with epilepsy, the anti-epileptic meds and the seizures themselves can cause low testosterone, affecting the motility of the sperm and the volume of the semen and sperm produced. However, some men with epilepsy have more trouble than others. The most disadvantaged men seem to be men with either partial-onset and early-onset epilepsy. In addition, there is a link between specific drugs Valproate, Carbamazepine, and oxcarbazepine and fertility issues.




Who can I speak to about this issue?


Be sure to talk to your primary care doctor or neurologist if you have any concerns about your sexual functioning or plans for fatherhood. Don’t stop your seizure (or other) medications if you think they are making problems worse! You will need to work with your doctor to plan a careful change if that is recommended.




In what different ways does epilepsy impact male sexual function?


The following possible explanations continue to be investigated and can impact men who are trying to become fathers, as well as those who are not. -Sexual dysfunction in men with epilepsy, including decreased interest in sex (desire/libido), decreased physical arousal (erectile dysfunction), and decreased ability to achieve orgasm *All of these may be impacted by changes in circulating hormones (testosterone and others) due to altered brain function related to epilepsy. This is especially true in focal (partial) epilepsy. *Some medications used to treat epilepsy may also decrease levels of circulating testosterone, especially the older, “enzyme-inducing” medications: phenobarbital, phenytoin, carbamazepine, and primidone. -Decreased fertility in men with epilepsy due to lower sperm count or impaired sperm motility -Comorbid depression, anxiety, and lower self-esteem in men with epilepsy -Also, medications used to treat depression and anxiety, such as selective serotonin reuptake inhibitors (SSRIs), can decrease sexual functioning.





Female Reproduction

Does having epilepsy affect my fertility?


There appears to be no evidence that having epilepsy affects your fertility as a woman.




My doctor told me that because I need to take anti-epileptic medication, I should never get pregnant. Now that I am pregnant he recommends an abortion, but I want my baby. Am I wrong to think that my baby will be okay?


Any woman, whether she has epilepsy or not, has a two to three percent chance of having a baby with a birth defect. For women with epilepsy, the risk is four to eight percent. Even so, mothers with seizures have a better than 90 percent chance of having a normal, healthy baby. The actual cause of the increased risk of malformations has not been determined, but there are three strong possibilities: The birth defects are genetically related to whatever causes their epilepsy. -The birth defects are related to anti-epileptic medications needed to control seizures. -The birth defects occur because the baby may have a genetic susceptibility to possible harmful effects of medications. Stillbirths or miscarriages are also more common for women who have epilepsy, occurring in 1.7 percent of pregnancies, which is about three times the amount in the general population. There is also a small increase in mortality rates during the first year of life for children of mothers with epilepsy. That risk is only about 0.6 percent but is higher if the mother’s seizures are not well controlled.




What can a woman do to decrease the chances of her baby having a physical or mental disability?


Women should take folate acid when they are pregnant. But, because women often do not know when they first become pregnant, women should start taking folate acid as soon as they start trying to conceive.




What are some other things I can do to decrease my child’s chances of having a mental or physical disability?


Discuss possible medicine changes with your doctor, but do not change your medicines on your own. Check your anti-epileptic levels because your pregnancy lowers those levels. Use maternal serum-alpha-fetoprotein testing and a high resolution or level II ultrasound to ensure the baby is doing all right. Make sure you are sleeping, eating enough, and taking care of your nutrition. Avoid the usual suspects of caffeine, alcohol, and cigarettes.





General Caring for the Baby

How do I keep my baby safe during bathing, changing, washing my baby?


Wash the baby with a bowl of water and keep it out of the baby’s reach. Change the baby on the floor. Keep supplies you need for changing the baby on each floor of the house.




What changes should I make when I feed my baby or young child?


When you feed your baby, sit on the floor, making sure you are sitting on a thick rug and that you have supported your back. If you experience confusion due to your AED, make notes of when you feed the baby and how much you feed him. There are also apps for this. You can write dates on food and milk so you will know the date you prepared them. When you feed your young child, we suggest putting them into a low chair rather than a high chair. If you frequently fall to one side, make sure you place the child on your other side. In case you have a seizure and are unable to make food, keep food already made.




How do I make sure my baby is safe during and after my seizures?


We suggest asking another person to carry them up and down the stairs or using a car seat if you cannot find someone else. If your house has hard floors, you can use a pushchair to protect your baby. Ensure that someone else can take care of your baby if you need rest after the seizure, or at least make sure your room is hazard-free. If you frequently fall asleep after you have experienced a seizure, make plans for a friend to call you to make sure everything is alright. It is a good idea not to leave your keys in the door when it is locked or use bolts and chains. You want your keys close but not in the reach of the child. It is a good idea to lend a key to a neighbor or buy a key safe. You can let someone nearby and who you trust know to watch the house for any strange occurrences. Avoid irons, hair straighteners, or curling tongs when it is just you and the baby.




How can I keep my child safe when using a pram or pushchair?


You should make sure the pram you use is well padded or use a pram/car seat combination. You can get a safety brake for the pram.




What precautions do I need to take when I take my baby outside?


Let someone know where you plan to go. Do not go near unguarded water, such as rivers. Avoid steep slopes, railway lines, roads. Make sure the child has an identification card with a number to call. You can always make plans for another adult to go with you.




Stress and lack of sleep make my seizures worse. I’m worried about taking care of my baby.





What special considerations do I need to keep in mind as a parent?


If your epilepsy is well controlled, you face very few restrictions on caring for a child. However, if your epilepsy causes impaired awareness and limited control of movement, you need to take special precautions when caring for a baby or a young child. Sleep deprivation and new parenthood often go hand-in-hand. Not getting enough sleep is a common seizure trigger. Stress that is induced by sleep deprivation and the excitement and life changes of a new baby can aggravate seizures. Sleep deprivation and family schedule changes may also lead to missed medications. Be aware of these potential problems and work with your health care team to develop a plan to reduce their impact.





Women Caring for the Baby

Am I allowed to breastfeed?


For most women with epilepsy, breastfeeding is a safe option. All seizure medications will be found in breast milk, but this usually does not affect the baby who has been exposed already to the mother’s medication during pregnancy. Talk with your doctor about your medications and breastfeeding, particularly if you are taking phenobarbital (Luminal), primidone (Mysoline), or benzodiazepines (valium, lorazepam, and clonazepam). Women who breastfeed while taking these medications will need to watch their baby carefully for any signs of excessive sleepiness or irritability. If your baby fails to gain weight because it is too sleepy to eat, you will need to follow up with your child’s pediatrician, the nurse, or a lactation (breastfeeding) consultant recommended by the doctor about switching to formula. A combination of breast and bottle may be an option depending on your baby’s symptoms. If you consult a breastfeeding specialist, this individual will work with your child’s pediatrician, the nurse, and you to determine the best approach. You may be asked to keep careful records of the time of each feeding and the number of minutes your baby breast-feeds, as well as voidings and stoolings so the doctor can evaluate how much nourishment your baby is getting. Continuing to take your prenatal vitamins is important if you breastfeed and if you plan on having another baby. While you are pregnant, it’s a good idea to learn as much as you can about breastfeeding and about resources in your community so you’ll know what to expect and what supports are available to you.




What if I have a seizure while I’m holding the baby?


There is no way to ensure that you won’t have a seizure while you are caring for your new baby. But you can always have a plan to protect the baby if a seizure occurs. If you have a warning before you have a seizure, you can maintain a secure area in each room of your house where you can safely lay the baby down if you feel a seizure coming on. Some women don’t experience an immediate warning before a seizure, but they may feel a bit strange for several hours earlier. If this describes you, you may want to have a friend or family member stay with you during a day when such a feeling occurs. Whether or not you have one of these warnings, you can minimize the risk of potential harm to your baby by taking the following precautions whenever the two of you are alone: -If you use a changing table, make sure your baby is always strapped in. Or you may want to change your baby’s diapers and clothing on the floor. -Always fasten the safety straps whenever you put your baby in an infant seat, even if you intend to be right there. -If you do not have grand mal or other falling-type of seizures, you may want to use a cloth-front baby carrier whenever you are walking or standing and holding your baby. -When feeding your baby, you may want to use an infant seat, or use pillows to make a comfortable seat on the floor. -Never hold your baby while cooking, ironing, or carrying hot liquids. Taking your medication as prescribed by your physician is the most important factor in reducing the chances of having a seizure while holding the baby. It is also very important to get enough sleep. Try to sleep when the baby sleeps, although this can be difficult if you have other small children and no one to help you. During the period when you first bring the baby home, you may need to enlist the help of family and friends to ensure that you get enough rest. Family members may also be able to help you during the night, by taking turns with feedings. Some mothers who breastfeed extend their sleeping time by pumping breast milk into bottles and then refrigerating it, so another family member can feed the baby at night. At least one study has shown that seizures are more likely to occur in the period following birth, known as the postpartum period. The processes of labor and delivery have stressed your body. It’s hard to find time to rest. You may be excited and anxious. Your hormones are changing. All of this contributes to stress, and sometimes to sleep difficulties as well. During this period your neurologist will want to check your anti-epileptic drug levels to make certain they’re within a range to protect you from having seizures. You will also want to make sure that those levels are not too high. Your doctor or nurse will be able to explain the symptoms of high drug levels. Even though you are taking the same amount of medication as you were before your delivery, those levels can rise during the postpartum period. This is why it is so important to continue to see your neurologist regularly.




Will my seizure pattern change after I have my baby?


That’s unpredictable. Some women with epilepsy have changes in their seizures while they are pregnant. During pregnancy, concentrations of your anti-epileptic drug (AED) may change or decrease, putting you at greater risk for seizures. Your physician may increase your seizure medication for better seizure protection. After your baby is born, your hormones change and medication levels in your bloodstream tend to rise, increasing the possibility of side effects. These factors may make it necessary for your physician to check medication blood levels more frequently in the first few months after delivery. Keep in close contact with your physician during this time until your body returns to its pre-pregnancy state.




Stress and lack of sleep make my seizures worse. I’m worried about taking care of my baby.


Every parent has to think about this. Women who have just had a baby will have disturbed sleep, extra work and stress, and hormonal changes — and for a woman with epilepsy these factors can increase the risk of seizures. Include other family members and friends in the care of your baby, to give you a chance to rest. As a parent, during pregnancy and after delivery, the best thing you can do for your baby is to take good care of yourself. Get enough sleep, eat well, exercise regularly and take your prescribed seizure medication. Talk over any problems with your neurologist and your primary health care provider, and get their advice about any necessary adjustments in your lifestyle.




How will nighttime feedings affect my seizures?


If possible, let your spouse do the nighttime feedings so that you can get some sleep. If you are still breastfeeding, then you can pump beforehand into bottles that your partner may use, or you can alternate with formula. You can also keep the crib in your room so that you can lie down in your bed to feed them.




I have heard a lot recently about postpartum depression. Is that something I need to think about?


Women with epilepsy experience the same emotional adjustments as other women after having a baby. Ensure that you discuss any changes in your mood with your doctor, especially if they are recurring and affecting your ability to perform your day-to-day tasks. You will want to discuss your risks with your doctor, especially if you have a history of depression. If you do experience a period of depression, talk about it with either your family or a health professional. You will want to keep your appointments with your psychiatrist and counselor. If you do not already have a psychiatrist or counselor, research highly suggests that you obtain one. Do not adjust your medicines that stabilize your mood without discussing them with your doctor.




I’m concerned about getting pregnant too soon after I have my baby. What can I do to prevent an unexpected pregnancy?


This is a valid concern. Breast-feeding and the expected hormonal changes in the months right after having a baby can make birth control complicated for any woman. Work with your neurologist and your gynecologist/obstetrician to choose the birth control method that is most appropriate for you. If you are using hormonal contraception (birth control pills, hormone implants or hormone injections), you may need to consider using barrier birth control methods instead of, or in addition to your hormonal contraception. Barriers are diaphragms, spermicidal vaginal creams, intrauterine devices (IUDs) and condoms. Together, you and your health care providers can make the decision that will work best for you.





Talking to My Child About Epilepsy

How do I tell my child about my epilepsy?


How do I tell my child about my epilepsy? Children are more aware than you know. They understand that something is going on. When they are old enough to understand, it is good to tell them what is occurring. Below are listed some tips for having a conversation about your epilepsy with your children. Use language they can understand. It is good to encourage your child to ask questions. Attempt to stay positive. Explain that the seizures won’t hurt you, but you may need some help during or after the seizures. When you feel comfortable, you can add more details about your condition. Above all else, center the idea that people who have epilepsy can live whole, happy lives.




As my children age, what other things about my epilepsy should I discuss with them?


When your children get older, you can teach them some first aid techniques that might help you or what to watch out for during or after your seizures. You can also teach them to call 911.