Q: Does the fact that a child has epilepsy mean that he or she is no longer a normal person? A: In general, children with epilepsy are neither deaf nor dumb, mysterious nor dangerous, just like normal people. As they get older, they can do what they like, play soccer, basketball, or ride a bike, but they need more attention or protection. The actual fact is that most people with epilepsy have good control of their seizures through medication and surgery, and a significant portion of epilepsy is self-limiting, meaning that it can stop naturally after a certain age. They are able to integrate into modern society, study, work and play, and even make great contributions to society. In history, there are many famous people who also have epilepsy, including the great emperors of ancient Rome, Napoleon of France, composer Handel, and the great painter Van Gogh. Therefore, even if a child has epilepsy, he or she may become a painter, poet, literary scholar, musician and leader in the future. People with epilepsy should not give up their studies, and parents and teachers should not use any excuse to lower the requirements and expectations for the growth of the patient. Patients should be helped to overcome low self-esteem combined with a sense of shame and be freed from psychological shadows. For patients with poorly controlled seizures, it is also important to make them understand that they should treat their disease objectively and do what they can to make appropriate lifestyle choices in the future. Q: Should I tell my child about my condition if he/she has epilepsy? A: You should tell your child the truth. Psychologists and sociologists have found that hiding the truth about an illness often increases a child’s fears and leads to more confusion. How to explain to the child and how much to tell depends on the child’s age and maturity level. Q: How should parents communicate with their children about their epilepsy? A: First, parents are advised not to hide the condition and should tell their child the truth about the disease. Otherwise, the child may no longer trust his or her parents when they receive the truth in the future. Second, use appropriate language and methods to explain to the child according to the child’s age, and avoid using complicated words and terms that the child does not understand. Try to communicate with your child in the same way that you would normally talk to him or her. Also, encourage the child to ask more questions and give reasonable answers. If the parent cannot answer at the moment, tell the child that you will find the answer as soon as possible. Usually, the answer can be found by consulting a doctor, reading relevant books, visiting the Internet, etc. Through effective communication, strive to make your child feel that, despite their epilepsy, seizures are likely to be controlled by taking medication and that epilepsy will be only a small part of their life. More importantly, they can live their lives like everyone else and deserve to be treated with the same respect and understanding, rather than being the subject of ridicule or isolation. Q: What should parents of children with epilepsy be aware of when communicating with each other? A: First of all, communication between parents of affected children should be encouraged, which is helpful for both parties. Imagine how encouraging it would be for other families, especially those whose children have just been diagnosed with epilepsy, when one parent tells the other parents that their child who has had the disease for 10 years has been accepted to some college. Parents can get together regularly to share problems, approaches, feelings and insights, share worries and joys, and also to communicate with each other about various aspects of epilepsy such as hospitals, doctors, educational materials and activities. It should also be noted that the information exchanged between parents often comes from personal experience and has its limitations. Some approaches may be appropriate for her child, but not necessarily for yours. Similarly, because of the different types of epilepsy, her child may not have seizures with carbamazepine and your child may have worsened seizures with carbamazepine. Therefore, parents should keep a clear mind and look at all kinds of information scientifically, i.e., listen and think, and not accept all kinds of information, let alone practice it blindly. For problems that are difficult to distinguish by yourself, it is recommended to consult a specialist at a regular hospital. Q: One of my children has epilepsy, how should I handle the relationship with other children? A: If there are multiple children in a family, the illness of one of the children will inevitably affect the relationship between the members, especially if the illness is severe and requires special care. Parents should be aware of the need to care for the sick child while not neglecting the other children. As soon as the other children are old enough or have learned to understand, parents should tell them about their sibling’s condition in an appropriate way, explain the basics of epilepsy in words they can understand, and encourage them to ask their own questions and express their inner thoughts. For example, there is often a sense of fear in other children when they see their sibling with the disease, a sense of imbalance when they see their sibling receiving special care, and so on. Parents should take these situations into consideration and spend some time with their non-ill children, and communicate with them to understand their true feelings, which will help them avoid misunderstanding and resentment toward their parents and their sick siblings later. Q: What should parents do if their child in adolescence is diagnosed with epilepsy? A: Adolescence is a special time in life when children transform into adults and undergo great changes and fluctuations, both physically and psychologically. This period is associated with a lot of rebellion, independence, increased self-awareness, dating the opposite sex, and worrying about the future, and is also the period when parents and children are most likely to have conflicts. Obviously, parents and children are bound to face this special period together, and adequate and effective communication between them is a strong guarantee for smooth passage through adolescence. Parents must be patient and understanding when dealing with adolescents with epilepsy. It is important to understand that children during this period are undergoing a huge transformation in their physical, mental, psychological, and social roles. With increased self-awareness, children are more sensitive to their external and social images. An epilepsy diagnosis will undoubtedly have an impact on children during this period. Even if seizures are well controlled, a condition like epilepsy can cause internal distress in children, and distress can produce fear and worry, fear of isolation from classmates, fear of ridicule, and even feelings of humiliation. The fact that certain activities are restricted due to fear of seizures, such as climbing mountains and swimming can add to the child’s feeling of being different from others. The specific effects of the disease vary from person to person and may be less severe for more mature children. Regardless, parents should be aware that epilepsy does have an impact on a child’s self-esteem, independence, state of mind very and behavior. When a child has epilepsy, it is unwise for parents to be overly protective of their child out of concern, not allowing the child to face reality, and not encouraging or even discouraging the child’s willingness to take care of him or herself. It is important to understand that for children to grow up healthy, parents must make them realize that they are the ones with epilepsy, not the parents. Children need to understand what their epilepsy is so that they can adjust their lifestyle, take their own medication, and cooperate with long-term treatment, with only appropriate parental supervision. Of course, children with more severe conditions, especially disorders, face different situations, and parents should make realistic plans for their child’s future life, school and employment. Q: How can parents face the challenges of a child with severe epilepsy? A: The severity of epilepsy may vary from child to child. In general, if the severity is mild, the impact on the family will be relatively small. Conversely, it can be significant, especially in children with severe disease that is associated with other neurological disorders. Severe epilepsy often means recurrent seizures that are difficult to control, taking multiple medications, being more prone to medication side effects, taking up more parental time and energy, and having a child with mental retardation, among other various issues, which do make being a parent more challenging in the face of these conditions. At times, parents may feel that a return to a normal life may seem out of reach, but this may not actually be the case. It is true that it can be difficult for families with a child with particularly severe epilepsy to fully resume their lives as they once did, but that is not to say that parents cannot take time out to spend alone and enjoy their own lives, only that they need to plan and manage their lives better and more diligently. There are two ways parents can try to get back to their old lives. First, it is important to have an objective and correct attitude. Parents must face the facts, accept epilepsy and the possible accompanying disorders, understand the nature of the disorder and what it really means for the child, and understand what the child with the disorder and other children without the disorder really need. At the same time, the needs of the parents themselves and their spouses must not be overlooked. Parents must seek the best way to care for their children and must decide how to live their lives. In the early days, some parents may understandably feel helpless and may even lose direction in their lives, and indeed many people who have been through it have felt similarly. But the important thing is that as parents, you can’t remain passive and face reality; parents must take ownership of the direction of their lives. Secondly, parents must be responsible for taking concrete action to restore a satisfying life. The needs of the parents, the affected child and other family members must be balanced. Stability and harmony in the family can have a positive impact on the affected child. If disagreements and stresses arise within the family, it is important to give early attention and communicate openly and honestly, listening more to each other’s feelings and clarifying one’s responsibilities. For problems that are difficult to solve within the family, sometimes help from other relatives, society, units and the community can be sought as appropriate. Q: What should I do if my child has epilepsy? A: The impact of epilepsy on a child’s behavior, intelligence and social life varies widely. Most children with epilepsy can lead a normal life with little or no restriction on social life and physical activity. Still, the diagnosis of epilepsy and the experience of repeated visits can be frightening and worrisome for the child, especially when seizures are not well controlled. In some children, seizures and the effects of medications may cause problems, and some children may also have other disorders that can have adverse effects. However, regardless of the condition, special attention should be given to children with epilepsy to ensure that they have a positive attitude and good self-esteem. How children view epilepsy is heavily influenced by their parents. Therefore, it can be said that the impact of epilepsy on the child depends to a large extent on the impact of epilepsy on the parents. If the parents have a positive attitude when faced with the disease, the child’s attitude will also become positive and will gain courage from the parents to overcome the disease and live happily. Understandably, upon hearing a diagnosis of epilepsy, parents may have a range of reactions: shock, panic, frustration, despair, guilt, anger and sadness, etc. There is then a period of adjustment in which parents gradually face the reality that life goes on and realize that their child and family can still continue to enjoy life. Q: My doctor recommended that my child undergo a lumbar puncture, is this dangerous? A: First, it is important to understand what a lumbar puncture is. It is a common neurological test designed to remove cerebrospinal fluid for laboratory testing and is useful in the diagnosis of certain neurological disorders, such as intracranial infectious diseases (encephalitis, meningitis). In clinical practice, we often encounter many parents who mistakenly believe that they are taking the spinal cord for testing. Like human saliva and blood, cerebrospinal fluid is produced all the time and it is harmless to remove it in small amounts. In general, lumbar puncture is safe and only mildly painful, provided that the indications are understood. The child may cry while under local sterilization or local anesthesia, and the doctor will usually administer some sedative medication beforehand.