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Notes for Parents/Caregivers

this list is by no means non-exhaustive. 

more questions are welcome and may be added with time.

 

Table of Contents

  1. How to recognize a possible seizure?

  2. How can I tell of a child is having problems with epilepsy?

  3. How can I help the child?

  4. What points to consider when explaining about epilepsy to a child who has it?

  5. What to tell other children who will have contact with people with epilepsy?

  6. Why is self-esteem often low in a child with epilepsy?

  7. What is needed for self-esteem?

  8. How to build up self-esteem?

  9. When to seek help?

  10. How to improve medication compliance/help your child takes the medication more easily?

  11. How to achieve good communication with doctors?

  12. What are the likely triggering factors to avoid?

  13. What is required in a babysitter for a child with epilepsy?

  14. When is a seizure considered an emergency?

  15. What are the safety precautions in daily living?

 

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How to recognize a possible seizure?

The following are the most common signs of possible seizure activity:

Observing a single instance of any of the these actions is no proof a child has a seizure disorder. It could be caused by other things. But if a pattern of this behavior is observed, diagnosis by specialized professionals should be followed up as epilepsy is suspected.

What has been observed must be mentioned in detail the doctor. 

How do I know a child is troubled over having epilepsy?

Possible signs of a troubled child may include a few of the followings: 

How can I help the child?

Epilepsy can be frightening and confusing for a child because they are unable to understand why the sickness has occurred or may even assume it is a punishment for being "bad." Talking and explaining about epilepsy can help children begin to cope, ask questions and reduce some of the myths and fantasies surrounding the condition. This can alleviate children's fears and encourage them to understand exactly what epilepsy is, why it occurs and how to manage it. For this, you need to give them honest, accurate, and age appropriate information to help them understand better. Therefore, gaining a thorough understanding of epilepsy yourself will enable you to explain the condition clearly to children as well as other family members. This will help the whole family come to terms with the epilepsy and be prepared in the event of a seizure. This is also the reason why this website is setup to help you. :)

What are the points to consider when explaining epilepsy to a child?

Establish a child's understanding and take it from there. Try to show understanding and willingness to discuss anything or prepare to answer any questions. Do it in an open and positive way. 

Get the child involved in managing their own conditions and encourage them to take responsibility for their medication as well as to explore epilepsy for themselves by using libraries or the Internet. This can help them come to terms with their epilepsy from an early age.

Be prepared for variety of responses from different children and be flexible in your approach in explaining. Some children will be satisfied with a brief explanation; others will want more detail. In some cases, children may require several explanations before they totally understand epilepsy so you have to show patience and concern at all times.

Take into account such factors as when and where you will be able to talk to them, how much you intend to explain and whether it is a private or a family discussion. These factors can influence the way the child reacts to the information.

Using diagrams and models showing the brain and seizure activity can help. Many resources are tailored to meet the needs of specific audiences including children. If you encounter problems, you can ask the doctor or a counselor to explain epilepsy too or to be present while you explain it.

Remember that a child with epilepsy may never have seen a seizure. Give him or her a realistic and matter of fact description of what a person may look like during a seizure. It is also important to reassure children that it is very rare for a person to die or experience pain during a seizure.

More: Talking to a child on Epilepsy

What to tell other children who will have contact with child having epilepsy?

When a child saw a seizure attack with convulsion ( e.g. jerking of arms ad legs), they may be frightened and likely to be upset at the sight of apparently serious illness in someone who had seemed as healthy as they only a few moments before. They may feel vulnerable themselves. When this happens, children need reassurance that what has happened poses no danger to them or to the child who had the seizure even though he looked as if he was. If the seizure produced unusual behavior, it should be emphasized that what happened does not mean the child has a mental illness or is "crazy." 

They need to be explained and their doubts answered with information related to their age. To reduce likelihood of teasing or isolation of the affected child. Children should be given a chance to voice their feeling about about happened and any misunderstandings be tried to resolve via discussion which should take place soon after the seizure. The child who had the seizure should be told such a discussion is planned and be allowed to decide whether he wants to be included in it. The child should be told what was said if he was not present. 

The discussion should include: 

Why is self-esteem often low in a child with epilepsy?

For children with epilepsy, high self esteem is especially important and it can sometimes be hard to attain. Self-esteem is especially important in life journey and the achieving of personal goals.

Epilepsy for some is an ongoing condition and the child must cope with knowing that the disease is here to stay and may even get worse. Almost all of these children initially refuse to believe they are ill, and later feel guilt and anger with parents and doctors for not being able to cure the illness. The young child, unable to understand may assume epilepsy as a punishment for being "bad." Often, children meet with ignorance and misunderstanding about their condition from peers, teachers, the community and even family members. The youngster may react strongly against pampering, teasing, or other attention. Uncomfortable treatments, and restrictions in diet and activity such as overprotection or isolation may make the child bitter, withdrawn, and frustrated because of having no control over daily living.

Seizures in epilepsy being unpredictable and irregular, presents for the child situations that can lead to feelings of embarrassment, rejection and guilt. As a consequence, difficulties can arise (at school, socially with their friends, and within the family) which make it hard for a child to have a positive attitude with relationships. School problems including avoidance of school and bullying can arise. This can increase the child's loneliness and feeling of being different from other youngsters.

What is needed for self-esteem?

One criteria in having good self-esteem involved good relationships which are based upon affection, inclusion and control. These psychological needs continue throughout life and enable us to become self-loving and confident people.

Remember each person is unique - even for identical twins ... So it is especially important for parents/caregivers and family members to relate to the child who has epilepsy so they do feel unique, loved and capable

How to build up self-esteem?

Show understanding and include the child in discussion of his or her condition.

Avoid comparisons between siblings or friends.

Find out, encourage, recognize and develop talents in the child to help build a positive self-image. Praise their achievement to increase self worth in child.

Attitude to behavioral problems in child should be tolerance and understanding seeking to emphasize on positives in behaviors instead.

Avoid restrictions or overprotection of the child as these can be very detrimental to their personal and social development because the child may not learn to socialize or may have difficulty separating from parents when it is time to be involved in school or other activities outside the home. 

Listening patiently to and make compromises with the child decisions or ideas make the child feel that they have the ownership of the decision.

Encourage self-management in epilepsy and responsibility of own safety e.g. to avoid triggering factors like alcohol and to take their medication as scheduled. The child should also feel free to ask questions and talk about their epilepsy. 

When to seek help?

Parents are usually the first to recognize that their child has a problem with emotions or behavior. Still, the decision to seek professional help from a child psychiatrist can be difficult and painful for a parent. The first step is to gently try to talk to the child. An honest open talk about feelings can often help. Parents may choose to consult with the child's physicians, teachers or other adults who know the child well. These steps may resolve the problems for the child and family. However if there are signs of troubled feelings or behaviors as what is mentioned above for more than 6 months, a child should be brought to see a child psychiatrist for appropriate treatment. 

How to improve medication compliance (correct drug taking)?

Make sure that the child fully understand the reasons for medication use, what benefits the medication should provide, as well as unwanted side-effects ranging from just annoying to very serious and the dangers involved when not following the instructions closely. 

Make known that if taken as prescribed, medication may reduce or control the frequency of seizures or possible side effects with drugs and improve the daily functioning of child. 

Include children and adolescents in the discussion about medications, using words they understand. Parents and children/adolescents need to be fully informed about medications.

Sometime a child may refuse to take the medications because of its taste or odor. If it's possible take medications with/in food to try mask the taste or smell. 

Many people with epilepsy notice that they have short-term memory problems which can make it difficult remembering to take medication regularly. Using a doset box can help. It may also be helpful to ask the child to carry a daily dose of medication in case he or she could not be at home in time to take the next dose.

Examples of questions to be addressed for better compliance with medications in children and adolescents:

  1. What is the name of the medication? Is it known by other names?
  2. What is known about its helpfulness with other children who have a similar condition to my child?
  3. How does the medication works? How long to see any improvement?
  4. What are the side effects which commonly occur with this medication?
  5. What are the rare or serious side effects, if any, to be reported when occur?
  6. Is this medication addictive? Can it be abused?
  7. What is the recommended dosage? How often will the medication be taken?
  8. Will any tests need to be done when taking the medication?
  9. Will there be monitoring of response to medication and make dosage changes if necessary? How often will progress be checked and by whom?
  10. Are there any other medications or foods which my child should avoid while taking the medication?
  11. Are there any activities that my child should avoid while taking the medication? Are any precautions recommended for other activities?
  12. How long does medication need to be taken? How will the decision be made to stop this medication?
  13. What do I do if a problem develops (e.g. if my child becomes ill, doses are missed, or side effects develop)?
If, after asking these questions, parents still have serious questions or doubts about medication treatment, they should feel free to ask for a second opinion by a child and adolescent neurologist.

How to achieve good communication with doctors?

Good communication is essential for a good medical treatment outcome. It enables the child to achieve the optimum effects form drug therapy with minimal experiences of undesirable side effects. It helps to save time and money as well since doctor can more easily achieve the most appropriate medication/s for the child condition. 

Preparing for the appointment enables one to find out more about epilepsy, how one can best manage it, how to improve medications compliance, how to avoid unnecessary side effects and if the medications are working as desired. 

Remember to keep and present a summarized record of the date and time of seizures, how long each lasted and the types and descriptions of the seizures which has occurred in between appointments. This will aid the doctor in monitoring the child response to the drug therapy.

Write down your questions beforehand and take notes of the answers so that you can keep track of all the information the doctor tells you. There may be long gaps between appointments with a specialist so notes will remind you of unresolved questions or problems. 

To avoid any misunderstanding, try repeating back to the doctor what they have said.

Ask your doctor what to do if you need to discuss your treatment or management between appointments. It's important to find a doctor who is understanding toward the child condition. If you are having trouble communicating with your doctor and feel that the problem cannot be resolved, consider changing your doctor.

You may want to consult with another doctor in order to obtain a second opinion. Most doctors do not object to a patient seeking a second opinion and it is your right to do so. However it is not likely to be in your best interest to receive continuing treatment from two doctors at the same time.

What are the likely triggering factors to avoid?

There are other possible triggers. Some of these are unique to certain people, others may be a little more common. For example some unusual stimuli which has been known to trigger seizures include the rubbing of the skin, colour yellow, the smell of glue and sounds such as the telephone ringing or a siren.

What is required of a babysitter for a child with epilepsy?

It is important for the babysitter to know what the seizures look like and know exactly what to do to help if one does occur. Learning how to keep the child safe until the seizure comes to an end as well as what to do thereafter is part of the essential as well. The basic first aids for seizures must be always kept in mind and made clear of when it is an emergency that requires calling for an ambulance. For usually, most seizures are not emergencies and do not need emergency care. Babysitter should also be aware that children with epilepsy are at risk of drowning if a seizure occurs in water. They require close supervision and it might be necessary to avoid baths or swimming altogether.

Babysitter should be given a report with the following details:

When is a seizure considered an emergency?

Immediate medical attention is required when:

Difficulty in rousing after twenty minutes.

Vomiting.

Complaints of difficulty with vision.

Persistent headache after a short rest period.

Unconsciousness with failure to respond.

Dilation of the pupils of the eye, or if the pupils are unequal in size.

What are the safety precautions in daily living?

 

Copyright 2001  [Epilepsy-4-AlL]. All rights reserved.
Revised: May 22, 2001

 

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