Watching your child have a seizure for the first time was probably one of the most frightening moments of your life. My parents told me that is most terrifying experiences of their life. Their bedroom was next to mine. One night they heard some funny noise coming from my room. They both went into my room to find me with my eyes rolled back twitching, lips blue, mouth chattering and body shaking.
Finding out that your child has epilepsy is a painful experience. When you have a child, you only want the best for your child. When your child gets a cold or a fever your stomach drops and you feel their pain. Can you imagine if you find out your child has epilepsy?
There are overwhelming feelings of sadness or depression, as parents grieve for what they perceive as the loss of their healthy child. They grieve for the life changes that their child will experience having epilepsy and they worry that their child will be unable to carry out their dreams that lie in their child’s future destiny. Feelings of grief are typical.
Many parents as ask themselves “Why did my child develop epilepsy?” Some parents blame themselves and feel that it is somehow their fault or wonder if they could have done something differently to prevent the seizures their child is currently experiencing. Let me tell you now that you cannot blame yourself. Your child developing epilepsy is not your fault. There are so many causes of developing epilepsy that it is impossible to pinpoint. Parents may feel resentful about the new challenges and demands they will be facing, and then experience guilt for feeling this way. These feeling are completely normal and all parents go through these emotions. Anxiety is the most common feeling because parents will have a number of overwhelming worries.
Some of them are:
- Will my child die?
- Are they going to have brain damage?
- Is my child going to experience problems with developmental skills?
- Can I let children play by themselves? Do I have to supervise them all the time?
- Can I send my child to after-school activities?
- How do I explain to my child that they have epilepsy? What do I say to him or her?
Along with these worries, parents also struggle with the fact they do not know when their child’s next seizure will occur. You will probably feel angry, scared, and resentful that you have no control over what will happen. You may worry about whether your child is safe while away from home, that teachers or other adults will mishandle seizures, or make the situation worse by overacting. Parents will also worry about the potential side effects of their child’s medications or the impact of missing school due to seizures and medical appointments.
The future may suddenly seem terrifying and uncertain for both your child and your whole family. Your child having epilepsy is not as bad as it sounds. Medical research has found that most children who have a seizure do not have another one. The medical community has also found out that a majority of children who have epilepsy (which means that they have had more than one seizure) will outgrow their seizure disorder. Mostly all children with epilepsy are perfectly healthy and normal. Their intelligence level is not affected. They can take part in after-school activities and any other activities that your child may enjoy.
Currently, medical research tells us that 70 to 80 percent of children can control their seizures with medication. There is no a cure for epilepsy. Many doctors feel medication is the answer for children. Many doctors say all children need is medication because their seizures not as severe as adults are and with medication, the seizures may go away on their own.
Once your child experiences seizures or epilepsy, it will probably change your family for life. A parent who has a child with epilepsy will have to obtain new responsibilities. You will need to make sure that your child is getting good medical care. You need to make sure that your child is seeing a doctor who knows a lot about epilepsy and is up to date with all the recent medical research and medications. The best doctors to see are epileptologist. These doctors focus only on the study of epilepsy. You can find a good epileptologist in your area by contacting an epilepsy clinic or your states epilepsy foundation. The main epilepsy foundation is in Maryland. They could probably direct you to the people you need to speak with.
You will have to make sure that your child takes their medication. Skipping a dose can cause a seizure. You can buy weekly medication organizers, so your child does not miss a dosage. You should do your own research and find out as much as you can about epilepsy. Do not rely just on the doctors. Doctors are human. They can make mistakes too. You need to find out as much as you can about epilepsy and make sure you, your family and your doctors are doing everything possible to help your child. You may also have to become an advocate for your child, explaining epilepsy to family, friends, and teachers (you will have to tell the school. In case, your child has a seizure in school).
It is not going to be easy in the beginning. You will probably feel overwhelmed, stressed, and extremely upset. While it is tough being the parent of a child with epilepsy sometimes, just remember that treatment works. Epilepsy is not nearly as scary as it sounds. Using the medical treatment of epilepsy will help your child, so they can live a healthy, productive life with few limitations.
Do your research
A child developing epilepsy is a shock to everyone. It places new demands on the family. When one member of the family has epilepsy, everyone in the family is affected by the disorder. There are different ways to help cope with your child’s disorder read and find out as much as you can about epilepsy.
- What is epilepsy?
- Is medication is available?
- Which medication is used mostly for children?
- Are their side effects?
- What tests should I take my child take?
- Keep a journal
- Figure out how many seizures your child is having monthly
- Write done what do they do during their seizures
- Report each seizure to your doctor
- Find out the lasted medical techniques available
- Join support groups
- It may be hard at first to reach out for help but talk to other parents who have gone through similar experiences. This helps you feel that you are not alone and that you have other parents that understand what you are going through.
- Do not be in denial. Accept that your child has epilepsy. Pretending that your child does not have epilepsy will only make matters worse. Sometimes, one parent will cope with their child’s epilepsy by learning everything there is to know about epilepsy, while the other parent remains motionless. Holding all their emotions inside and make believe nothing is wrong.
Find out about the ketogenic diet – The ketogenic diet can help control some children with epilepsy and stop seizures without any medication. It works very well for many children. It is strict diet and difficult to follow. In fact, it is so difficult to follow that most doctors recommend it only for children who have not been able to control their seizures. The ketogenic diet is an extremely high-fat diet. Your child would have to eat four times as many fat calories as calories from protein or carbohydrate. A meal might include a small portion of chicken, a little bit of fruit, and a lot of fat, mostly butter or cream.
Your child may start the diet in a hospital, so nurses and doctors can observe the first few days. Your child will probably need to go without any food for 36 to 48 hours before beginning the diet. After that, your child’s food is increased slowly over a few days. This diet does not provide all the vitamins a body needs, so your child will probably have to take sugar-free vitamin supplements. This diet is not for everyone. This is something you would have to discuss with your doctor. This diet is not for everyone.
Every parent goes through a period (It is usually right after your child develops epilepsy) that you want to find someone to blame when your child is diagnosed with epilepsy. Some people blame themselves or someone around them that they see frequently to blame. This is very common.
Every parent has different ways of dealing with their child’s disorder. Eventually, they will learn to accept the child’s disorder. However long it takes, most parents stop asking why and move forward. You need to realize we cannot change the past. The past is gone. The present is now and what we do in the present will affect our child’s future. We need to help your child adjust and get on with their lives.
The best ways of dealing with the challenges of having a child with epilepsy are keeping the lines of communication open. Listen to your child. Show your child that you are interested in what he has to say. You do not need to understand, relate, or like what they are saying.
- Speak to your spouse and close relatives about how you are feeling
- Talk to your children about epilepsy and seizures
- Take their concerns seriously and get outside help if necessary
- Call the Epilepsy Foundation and tell them about your child’s concerns and yours and ask them to direct them to the people who can help
- Let your child know that it is okay to feel frustrated or angry and that he or she can talk to you about their feelings.
- Do not let them feel different. Make them feel like they are just like everybody else
- How you deal with their disorder now will affect how they grow up
Children go through many similar feelings as their parents. When I was a child, I use to cry after a seizure because I wanted them to stop. Depending on the age of the child and. the type of seizures they are having, they may experience fear, anger, worry, or an overwhelming amount of emotion. They may feel afraid of having a seizure in public, in front of their friends or in school. They may feel confused or anxious about having to attend medical appointments, undergo tests, take medications, or miss school or other activities when a seizure has occurred. Children may feel angry if they have an aura (a feeling before a seizure.) They may get upset if they feel epilepsy is preventing them from taking part in activities with their friends.
Some children with epilepsy feel very isolated or different from their friends; being accepted by your friends is a crucial time in their development. It may be difficult in making close friends or they may not want to tell their friends about their seizures.
It is good to explain to your child that if someone wants to be your good friend that they are going to like you for whom you are and they are going to like everything about you. If they do not then they are not a true friend and you do not want them as a friend.
Usually, children with epilepsy develop low self-esteem because they feel different or not as good as the other kids do. It may become worse if schoolmates think of them as weak or if they feel, overprotective by their families. It is very important to make sure your child feels good about them and has high self-esteem. I cannot even begin to stress the importance of having high self-esteem; it is the key to having a healthy, productive life for your child.
Make sure children love themselves and accept themselves and their disorder. Make your child understand that they need to be grateful for what they have and others may have it worse. Give them some examples. You need to help them let go of all those angry emotions inside. If your child holds anger inside it will not help them, it will only hurt them. You need to show them how to think positively and focus on their accomplishments. Also, help them focus on the goals and dreams. You need to help your child believe in itself. Help them develop a sense of pride in themselves. Tell them it does not matter what others think about them, what matters is how you think about yourself.
Tell your child not to feel sorry for them. No one is perfect. Studies have shown that people who have negative attitudes are more like to live chaotic lives. Many people have a hard time focusing on the positive because they allow their negative sides to consume them… I firmly believe that focusing on the negatives will cause seizures. When you help, your child feels a sense of accomplishment and self-worth. You are helping your child to overlook the negative.
Confidence comes from our self-esteem. To have high self-esteem you need to help your child develop simple short and long-term goals. You need to help your child create direction in their life. This will help them developed a greater sense of pride, inner strength, and self-worth in themselves.
When your child has fears about seizures should address them right away and your child should feel that he or she could talk to mom or dad about any questions, concerns, or worries. It is important to not to focus completely on your child’s disorder and focus more on other positive characteristics of your child. Most children with epilepsy have the same concerns, desires, and dreams as other children. They want to be like everyone else. They do not want to be treated any differently. Most important do not forget to tell your child that you love them and how special they are to you. Hearing those words from mommy or daddy means everything to them. It gives them the strength to know that mommy and daddy love them just the way they are can help a child and give that child the strength and ambition to lead a productive and wonderful life.
Tell your child that they brighten your day. Let your child know how much joy they bring into your life. Show them how special they are to you and make sure you point out all their good qualities. The words I Love You, helps your child know that you love them unconditionally. You will love them even though they have epilepsy. Explain to them that their seizures make them no different from anyone else. They want you to love them no matter what.