Questions parents often ask

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What Caused my Child's Epilepsy?

For many children no cause is identified. Where causes are known they range from genetic and inherited conditions, head injury, brain infections (meningitis/encephalitis), developmental brain disorders, birth injuries, cerebral palsy, hydrocephalus and more rarely tumours. It is important to distinguish between causes of epilepsy such as brain injury and triggers for seizures such as high temperature.

What Tests and Investigations can we expect to have?

EEG and Sleep EEG:

EEG -(electroencephalogram) or brainwave test is designed to pick up brainwave patterns using electrodes placed on the scalp. The person must lie still. These are attached to the EEG which gives a printout graph of the patterns detected from the selected areas. It is a painless procedure and takes about 30 minutes. Any abnormality that occurs during the recording can be read from the graph and this gives important information about the focus (location) and spread of seizures. However, many people (60%) are not having abnormal brain activity or indeed clinical seizures whilst the test is being performed and may have a normal reading. A normal EEG result does not exclude a diagnosis of epilepsy. A sleep deprived EEG means the doctor may request the child to stay awake for longer the previous night or be woken earlier on the morning of the test so as to enhance the likelihood of obtaining abnormal rhythms connected with sleep deprivation.

CT or Computerised Tomography

CT is a brain scan. The child must lie still again and the head area is scanned by a machine that is like a revolving drum. It is painless. The purpose of the scan is to rule out for structural abnormaities such as tumours, malformed veins, areas of calcification. Over 90% of people with epilepsy will have no such structural abnormalities which is good news.

How does the doctor decide that my child has epilepsy?

When a child has seizures their GP will discuss referral options with parents whereby children may be seen by a Paediatric Neurologist. As there are a small number of  these specialists this may involve a waiting period. Whether the child is started on treatment in advance of seeing the Neurologist is a matter for the GP and parents. Many parents express concern about putting a child on medication at this stage whilst others are concerned about ongoing seizures. A detailed history is important when diagnosing epilepsy and there are many ways parents can be prepared to provide as much information as they can to the clinician.

What is the Outlook for my Child? Will They Grow Out of Epilepsy?

For the majority of children the outlook is favourable as epilepsy is a treatable condition. Most childhood epilepsy is controllable with treatment and therefore may not persist beyond childhood. Whether a child is likely to "grow out" of having epilepsy depends on the kind of epilepsy they have. For most children it is more realistic to talk about controlling their epilepsy rather than curing it. Once a child is well controlled on medication for 2-3 years the doctor may discuss with parents the option of withdrawing medication.

How can I help my child live with epilepsy?

Having an upbeat approach will help you and your child cope best. Make sure you get the right information about your child’s epilepsy. Talking about epilepsy openly with your child will help them understand it better. Using child friendly resources like Epilepsy Ireland’s children’s books will help you explain to even quite young children.

How do I explain epilepsy to my child?

Your child’s questions need to be answered honestly. This helps them to become more confident and understand their epilepsy better. There are a range of child friendly resources available from Epilepsy Ireland which may help explain epilepsy to children. See also our section on discussing epilepsy with children and with teenagers. Your Epilepsy Ireland Community Resource Officer can discuss how best to approach telling children about their epilepsy.

Who needs to know about my child’s epilepsy?

Anyone who takes responsibility for your child at any stage needs to know. This includes teachers, childminders, close family, sports coaches and anyone taking your child for extra-curricular activities or camps. Other parents who might be supervising your child on playdates, parties and sleepovers may need to know. The more information they have the better prepared they are to handle any seizures. Even if seizures are controlled teachers should know that the child is on medication for epilepsy. The teacher needs to be made aware of any side possible effects of medication on concentration or behaviour.

What about school and learning?

Most children with epilepsy are as academically capable as their peers. Those attending mainstream school can often fulfil their potential as much as any child. If a child has concentration or memory problems they may need some extra support. Teachers will need to know about the child’s needs so they can offer school based supports. In state exams like the Junior or Leaving Certificate a student can apply to the State Examinations Commission to have Reasonable Accommodations in Certificate Examinations made for them. This may mean a separate room or maybe the chance to complete the exam later that day if they have a seizure during it. Career guidance teachers can support a student with epilepsy make a college choice or career choice that is suitable for them.

Can they go to college?

Epilepsy is not a barrier to going to college. Many young people with epilepsy go on to third level study. Students with ongoing epilepsy may be eligible to apply for the Disability Access Route to Education (DARE) scheme as part of their CAO application. This scheme has a percentage of places in the major colleges which can be accessed on a reduced points basis. The scheme is for students with disabilities whose condition has impacted on their learning or attendance at school. See www.accesscollege.ie for more information. When a student with epilepsy enrols in college they should also register with the Disability Officer to see what supports the college can offer. Epilepsy Ireland runs a FETAC Level 5 one year full time Access course for people with epilepsy. The course is called Training For Success and graduates can also progress to college from this course.

Can they take part in sports and leisure activities?

Most children with epilepsy can take part in most sports and hobbies as long as safety guidelines are followed. It is important to encourage the child to continue with activities that are safe or can be made safe for them. The doctor or specialist nurse can advise on what is safe for a child to do.

What is the best way to record my child's seizures?

Keep a diary of all witnessed and suspected episodes. Describe what happened in as much detail as possible. Divide your account into before during and after. The Epilepsy Ireland app can assist you in this.

Before (for the previous hours or day):

  • What was the child doing just prior?(playing, sleeping, awake, watching TV etc), record any behavioural or mood changes that were notable prior to the seizure, had the child been unwell prior to this infections, fever, tiredness, on medication
  • Were they stressed or excited or "out of sorts" in some way?
  • Had their pattern of sleep or meals been disrupted lately?
  • Other factors to consider - recent travel, any changes and disruptions to routine

During:

  • Did the episode begin promptly or develop more gradually?
  • Did their behaviour indicate getting a warning? (eg. seeking comfort from parent)
  • Was consciousness lost or otherwise affected ? (confusion/ disorientation)
  • What happened to the child? - e.g. jerking movements of limbs, automatic behaviours such as wandering chewing, staring, blinking, eye movements, tremor, sounds.
  • Were both sides of body affected or one side?
  • Was bladder or bowel control lost?
  • Were they pale or flushed, agitated or unresponsive?
  • How long did this stage of the episode last? - try to time it as accurately as possible.

After:

  • Was the child sleepy?
  • How long did they need to sleep for?
  • Were they confused or disorientated?
  • Did they have any memory of the event?
  • Did they sustain injury?
  • Were they able to describe any part of the experience?

Video recording of seizures is a very useful method of capturing the episode. When we observe a seizure we are often emotionally affected by what we see and parents frequently recount feeling very distressed witnessing their child have a seizure. This can mean it is difficult to fully recall accurately what happened . Where seizures are likely to recur it is a good idea to try to record it on a 'phone. Perhaps one parent can record the seizure this way whilst the other tends to the child. Rarely will the child have a seizure when they attend the clinic so having it on video gives the doctor an exact idea of what happened.

Do's and Don't's for Parents and Guardians

Do accept your child for themselves. They are a unique person who happens to have epilepsy.

Do encourage them to think of themselves this way.

Do focus on what they can do rather than what they can’t do.

Don’t encourage them to see epilepsy as a barrier to doing something or to see themselves as “less able”.

Don’t restrict your family life unduly because of your child’s epilepsy.

To find out more download our 'Talking About Epilepsy' booklet here

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