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Telling your child
Other family members
School
Getting on with life
Seizures during sleep
Swimming
Cycling
Computer games and TV
Once the diagnosis of epilepsy is confirmed, the process of living with the condition begins. Most children and parents adapt very well after the initial period of anxiety and confusion.
An issue that concerns many parents is who they should tell about their child’s condition. They may be concerned that people will react negatively when they hear that the child has epilepsy. It is felt that being open and honest about your child’s condition is the best approach, even though you and your child may come across people who may have a negative and stereotypical image of epilepsy.
While encountering negative attitudes can be distressing, it can also be an opportunity to inform people and educate and change things for your child.
Telling your child
How much information a child requires about their condition will depend on their age. Being open with your child is particularly important. A child will need to be reassured and if not, given an appropriate explanation. Many come to the conclusion that things are far worse than they actually are and as a result children may become isolated with their fears, have no one to talk to or to ask questions about their condition and may become anxious or even depressed.
Older children and teenagers will need to know exactly why they have to take their medication and take it as prescribed. They will eventually have to learn to take responsibility for their own medication as if they do not fully understand why they take it, they may decide not to bother and seizures may recur.
Other family members
Other children in the family will also need an explanation appropriate to their age. If they have seen their brother or sister having a seizure they will need to know what has happened and to be reassured and helped to cope with it should it happen again. In most families, grandparents, aunts and uncles can be a great help and support but they too will need the situation explained to them.
School
It is important to tell anyone who cares for your child if the child is likely to have a seizure. Even if your child does not have seizures, his teacher probably should know that he is on medication and why.
Often parents’ greatest fear is that when the teacher has been told of their child’s condition it will change the attitude to the child and less will be expected of them. The level of knowledge among teachers about epilepsy can vary and it is important to give as much information as possible to the teacher about the condition, dispelling any myths etc and providing information literature if possible.
If your child is likely to have a seizure in school it is a good idea to work out in advance with the teacher what should bee done. The teacher should know how long the seizure normally lasts, what she can do and what happened afterwards.
With some of the rarer and more severe forms of epilepsy, or where the condition is part of a complex range of disabilities, the child may need special help or may need to attend a special school. However, the vast majority of children with epilepsy attend and do well in ordinary schools.
Getting on with life
All parents have to allow children to explore their environment, do things by themselves and occasionally even have mishaps in the process of learning. The child with epilepsy, no less than any other child, needs to be allowed to do this if he is to be given the chance to develop into an independent and self-confident adult.
The child with epilepsy is no more or less special than any other child in the family and should be treated, as far as possible, in the same way as the other children in the family. They need the same discipline and the security of set boundaries as any other child. They will have to learn to cope with the ordinary frustrations of life like everyone else.
Your child should be taught to avoid using epilepsy as a crutch or an excuse for not doing the best she can.
At the same time, parents have to try to minimise the risks as much as possible and find ways to making everyday hazards less dangerous. Each child’s situation is different and risks will need to be assessed on an individual basis. Obviously, difficulties will be greatly reduced if the child’s seizures are controlled quickly and easily;in such a case there may be no need to impose any restrictions on the child’s activities.
If precautions have to be taken, they should be sensible and realistic. Remember to review them periodically to make sure then are still necessary.
Seizures during sleep
Many parents worry about the possibility of their child having a seizure at night. Because of this, sometimes parents start allowing the child to sleep with them in the room. This is not a good idea and the temptation to do it should be resisted.
Children may have seizures while asleep but they rarely come to any harm.
If you are concerned, it may help to ensure that your child has a firm mattress and a safety pillow. For added reassurance, a plug-in intercom can be used until you feel more relaxed.
Swimming
All children should be encouraged to learn to swim and the child with epilepsy is no exception. If a child wants to swim and is continuing to have seizures, some special precautions should be taken. The child should never swim alone and should be supervised by someone who can recognise a seizure starting and who can support the child, keeping their head above water until a seizure is over.
Cycling
Cycling in busy traffic is not a good idea if a child is likely to have a seizure, so it may be necessary to stop the child cycling for a time. You should let the child know, however, that this is likely to be temporary and once seizure control is established, they should be able to resume cycling.
Obviously, the frequency and the severity of the child’s seizures will be an important factor in deciding on restrictions, if any, which may be required. Remember to insist on a cycle helmet for all children and not just those who have epilepsy.
Computer games and TV
One to three per cent of people with epilepsy are photosensitive, which means that their seizures may be triggered by flashing lights or strong geometric patterns. This type of epilepsy affects children more than adults and is usually very easily treated.
Children who are photosensitive or who are prone to have seizures triggered by flickering lights, are usually well advised to watch TV in a well-lit room, to sit well back from the TV screen, to use a remote control or if it is necessary to approach the screen to cover one eye to reduce photic stimulation.
Some computer games, especially those incorporating flashing lights or strong geometric patterns, could conceivably trigger seizures in children who are photosensitive; however, the number of people who could be affected in this way is very small.
Most people who are likely to have seizures triggered by computer and video games will be aware of the precautions they should take. The general rules include:
- Do not sit too close to the screen
- Reduce the brightness of the screen
- Avoid continuous exposure to the same pattern
- Don’t allow a child to play when he is excessively tired.
(Further advice is contained in ‘Epilepsy - a Parent’s Guide’, written by Dr Joe Mc Menamin and Mary O’Connor Bird, and available from Brainwave at: http://www.epilepsy.ie)
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