If you are pregnant or planning to have a baby in the future, the health of your baby has probably been a topic, especially if you have epilepsy. There are many things to consider when planning a family, and people who have epilepsy have valid concerns about whether their condition will affect the pregnancy, or be passed onto the baby. Epilepsy is often caused by genes or genetic diseases, but that doesn’t necessarily mean that it will be passed on to the child.
- What is epilepsy?
- Is epilepsy genetic?
- Is it safe to have a baby?
- How to tell if my child is born with epilepsy
- Caring for a child with epilepsy
What is epilepsy?
Epilepsy is a condition in which a person has recurrent seizures. These seizures cause the brain to stop functioning properly for transient periods of time. A person who has recurrent (2 or more) seizures will generally be diagnosed with some form of epilepsy.
There are different types of seizures a person with epilepsy may have. Many people believe all seizures are motor seizures. The symptoms of this type of seizure include twitching, jerking, stiffening and/or repetitive movements such as licking.
Due to the severity of some motor seizures, like tonic-clonic seizures, these are the seizures people imagine when they think about epilepsy. There are some people with epilepsy who suffer frequent and severe events, but most don’t suffer seizures that cause convulsive movements.
Non-motor seizures may present as episodes of staring, losing awareness, or mild repetitive movements. They look very different from motor seizures, and as with all seizures, the person may not be aware the event is happening and suffer loss of awareness.
Seizures can begin on one side of the brain and spread to the other side, remain one-sided, or start on both sides in a generalised fashion. Where a seizure starts determines its classification and they are classified as having “unknown onset” until testing can determine where the seizure originates and whether or not it spreads.
The myths and facts of epilepsy have caused fear for people who suspect an epilepsy diagnosis. However, approximately 65 million people in the world have epilepsy, and 70% of people have control their seizures with medication. In addition, people can “outgrow” some forms of epilepsy that resolve on their own over time.
Epilepsy is a serious and complex condition, but we understand it now more than ever. Most people can live normal lives with appropriate management and treatment, and a correct understanding of their condition.
Is epilepsy genetic?
People who are diagnosed with epilepsy often wonder how they developed it and if they’ll pass it on to their offspring.
There are multiple causes of epilepsy, some of which include:
- Genetic inheritance
- Genetic changes that are not inherited
- Damage to the brain that may have been caused during development or by injury
- Concurrent genetic conditions such as neurofibromatosis
If you want to know if you are going to pass epilepsy to your child, there is no clear answer. If both parents have epilepsy the risk is a bit higher. Most children will not inherit epilepsy from a parent but the chance of inheriting some types of epilepsy is higher. Similarly, a person with epilepsy may not have parents who have epilepsy at all.
There are some inherited genes that can cause epilepsy and are prone to run in families. A family can also have genetic predispositions (an increased chance of developing a particular disease due to the presence of one or more gene mutations and/or family history of the condition) that can lead to developing epilepsy.
Studies have shown that there is an increased risk of epilepsy developing in children whose parents have epilepsy, but this risk should be discussed with your doctor. The type of epilepsy and other factors can greatly affect that risk.
If you have epilepsy, you may be afraid that your children will have epilepsy too. Therefore it’s important to seek information from your doctor. The risk of passing epilepsy on to your children is usually low and it shouldn’t be a reason not to have children. Medical testing may help people who have a known genetic form of epilepsy understand their risks.
Is it safe to have a baby?
Your doctor is in the best position to advise whether it is safe to have children. People with epilepsy often have healthy babies and suffer no additional health issues after childbirth.
You will have to coordinate your epilepsy treatment with your prenatal needs as well as manage risks if your seizures cause falling. Anti-seizure medication during pregnancy will be something you and your doctor will have to manage to ensure the health of you and your baby.
Safest epilepsy medication
Pregnancy is more likely to cause the frequency of seizures to increase due to stress and hormonal changes in the body, but many women experience no change in their seizure activity while they are pregnant. Anti-seizure medication prescription may be adjusted to limit harm to the mother and limit the risk of any adverse side effects to the developing fetus.
Valproic acid (Valproate) is said to have some of the highest risks of developmental issues for children whose mothers take this medication during pregnancy. The risk can be decreased with a lowered dose. This risk and alternative treatment options must be discussed with a medical provider.
Only a prescribing physician can advise you of the safest medication. Generally speaking, the safest medication is the lowest dose that can safely control seizures while pregnant.
In the general population, there is a 2% to 3% occurrence of congenital malformations that cannot always be predicted or prevented. In women with epilepsy, the risk is doubled to about 4% to 6% but overall remains low.
Possible side effects reported in the developing fetus include:
- Congenital heart disease
- Urogenital effects
- Neural tube defects
- Facial dysmorphism
- Poor dental development
This list can be frightening to expecting parents, but concerns should be discussed with a doctor. There are risks in any pregnancy, and your specific medication will present a very different risk from other medications. The risk of pregnancy complications with anti-seizure drugs may be lower than the risk without taking them.
How to tell if my child is born with epilepsy
Recognising the symptoms of epilepsy is the first step in detecting it in your child.
The most common symptoms of seizures are:
- Staring into space
- Strange perceptions or mood changes
- Repetitive actions that are abnormal
- Stiffening of the body or limbs
- Jerking movements or convulsions
Especially during the early ages, it can be difficult to tell what is normal or abnormal behaviour. If you suspect that your child may be experiencing any symptoms of a seizure, you should take notes and record video to discuss with their doctor.
The doctor diagnosing your child will likely order an electroencephalogram (EEG) test. An EEG test records the electrical activity of the brain and can be done in the comfort of home over several days.
Caring for a child with epilepsy
Understandably, it can be a worry If your child does develop epilepsy. However, we understand so much more about epilepsy now, and many of the fears can be alleviated with proper treatment.
After proper medical care, the other thing that parents can do when caring for a child with epilepsy is to keep their lives as normal as possible. Of course, there might be some restrictions on their daily activities but children can adapt well. Restrictions don’t mean that there aren’t alternative activities that they can do.
For parents, learning first aid, developing a seizure management plan, and educating friends and family about your child’s condition will make a big difference. Not only will you be prepared during an event, but your friends and family will understand and be empowered to help as well when a seizure occurs.
Commitment to daily medication administration is critical to managing seizures and should become a routine part of life, similar to regularly brushing teeth.
At the end of the day, don’t focus too much on what your child can or cannot do as epilepsy is only a small part of what they will experience in life.
Are you concerned your child could have epilepsy?
If you’re concerned that your child is experiencing seizures, speak to their doctor. Use the Seer app to keep a record of their seizures, including notes and duration, so you can go to the appointment prepared.
To diagnose the events, their doctor may refer your child to a long-term video-EEG test with Seer Medical.