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Information on epilepsy: Medication for children |
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Table
of currently available drugs for children
Treatment for children aged 12 and underMost people with epilepsy, including children, take anti-epileptic drugs (AEDs) to control their seizures. You or your child may have questions about taking medication for seizures. This page hopes to answer some of these questions. There are lots of different types of epilepsy and epilepsy can vary from one person to another, so the information here is quite general. If you have any questions or concerns about your child’s epilepsy or treatment, their paediatrician or your pharmacist may be able to help. How does the medication work?Epileptic seizures
happen when ordinary brain activity is interrupted for a short time. Antiepileptic
drugs (AEDs) act on the brain to stop seizures from happening. AEDs do
not treat the underlying cause of epilepsy and so do not “cure” epilepsy. Some guidelines for drug treatment
Generic and brand names.Most AEDs have at least two names: a generic (or chemical) name and a brand (or trade) name given by the manufacturer of the drug. For example, carbamazepine is a generic name and Tegretol is its most common brand name. Some AEDs have several different brand names, because different companies make the drug, but they all have the same generic name. Although drugs that share the same generic name all contain the same active ingredient (the part of the drug that works on the seizures) they might vary slightly. Even slight variations in the drug could affect seizure control or side effects. For this reason, it is recommended that the same AED preparation is taken all the time. This means always taking either the same generic-named drug or the same brand-named drug. Some AEDs are made abroad and are brought into this country. These are called parallel imports. If your child’s AEDs are parallel imports, the packaging may look slightly different but there should be a label on the package in English to tell you what the AED is. The patient information leaflet should also be in English. |
Will my child always have to take medication? Will AEDs affect my child's learning? Will the drugs affect my child's behaviour? My child has learning difficulties; does this make any difference to treatment?
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Will my child always have to take medication?Around two-thirds of children can get total seizure control with AEDs. If a child is seizure-free for two years it may be possible to slowly stop their medication (called withdrawal). This depends on the type of epilepsy or syndrome a child has. With some syndromes, seizures are likely to start again if the AEDs are withdrawn. Withdrawal is a gradual process, which can take several months. If seizures begin again then the AED may need to be started again. Because seizures could start again if AEDs are withdrawn, the possible impact on the child if this happens can be talked through with their specialist. For some children, their seizures may stop happening of their own accord. This is called spontaneous remission. This only occurs in certain types of epilepsy and it may not be possible to predict if this will happen. Some types of epilepsy continue into adulthood, even if medication is controlling the seizures. This means that if medication is withdrawn, seizures start again. If your child’s epilepsy continues, the management of their epilepsy will transfer from a paediatrician to a neurologist. The age when this happens varies but is usually around 16 - 18 years old. This can be a useful time for you and your child to discuss with the specialist how their epilepsy care is going to continue. Do AEDs have side effects?All drugs, including AEDs, can cause side effects. Because AEDs act on the brain, side effects such as drowsiness and unsteadiness may happen. Whether side effects happen or not depends on each child’s individual reaction to the drug. Sometimes side effects happen when the drug is taken for the first time, or as the dose is increased, and this usually wears off after a few days. Some side effects can be avoided by starting AEDs at a low dose and increasing the dose slowly, so the body can get used to it. Some side effects happen if the dose is too high, and usually stop if the dose is lowered. Some children have allergic reactions to an AED which can be serious. A common sign of an allergic reaction is a skin rash, which usually occurs within the first few weeks of starting the drug. If your child develops a rash, it is recommended that they see their GP or paediatrician straight away. Long-term side effects may happen if drugs are taken for a long time (often many years). These are rare and not everyone who takes AEDs for a long time will have these side effects. The risk of having these side effects can be reduced by keeping the drug plan as simple as possible. How can side effects be seen and what can be done?Recognising side effects in babies and young children can be difficult as they are unable to say how they are feeling. If your child feels unwell and is not able to tell you, their behaviour might change. If you notice any changes or unusual behaviour, it may be helpful to tell their specialist. For teenagers, some
side effects can be more important than others. For example, AEDs that
cause weight gain or acne, can affect selfesteem. Some AEDs can affect
concentration, which could cause difficulties at school. Side effects
or the possibility of them, may mean some teenagers do not want to take
their medication. If you or your child are concerned about side effects, you could discuss this with their GP or specialist. If side effects happen, another AED might be tried instead.
Are there any special issues for girls?Yes, there are several issues that might be important. Some drugs can affect a girl’s periods and some can affect certain methods of contraception. It might be helpful to talk about these issues with the specialist, including your child in the discussions whenever possible. Some AEDs can affect
an unborn baby, so discussing medication before becoming pregnant (or
as early on in a pregnancy as possible) is also important. Will AEDs affect my child's learning?Will AEDs affect my
child’s learning? There is no evidence to say that AEDs have long-term
effects on development. Problems with learning or development could be
due to the underlying cause of seizures or because of having seizures.
If you have any concerns about your child’s learning, you can discuss
this with their specialist. Will the drugs affect my child's behaviour?Most children taking AEDs do not have side effects or changes in behaviour. However, some children’s behaviour is affected by short-term side effects of AEDs, which usually disappear within a few weeks. Also, if medication is not stopping their seizures, the seizures themselves could affect their behaviour. Some changes in a child’s behaviour could be due to other factors such as:
More information on children and education Taking medicationDo AEDs have to be taken at exactly the same time every day? For the best chance of stopping seizures, drugs need to be taken regularly (usually once or twice a day) as this helps to keep the level of AED in the body stable. The exact timing of doses is not crucial but it is helpful to take the same dose at roughly the same time each day; for example:
Taking AEDs either just before or just after a meal can help the AED to be absorbed into the body. What if my child misses a dose? Missing a dose on a rare occasion is unlikely to cause a seizure. If a dose is missed and the AED is usually taken:
The P.I.L. may have further information. A drug wallet or pillbox
may help remind your child to take their medication. Drug wallets are
plastic boxes with compartments for different times of day, each day of
the week. Dispersible AEDs, that dissolve in water, cannot be put in drug
wallets because they react to air. The specialist or pharmacist will be
able to tell you which drugs these are. Drug wallets are available from
NSE. How can I help my child to take the medication? This may depend on how old your child is, and what help you think they need. Younger children may need help to remember when to take their medication - for example setting a routine of taking the medication at meal times or when they are brushing their teeth. Encouraging older children to be responsible for their medication might help them to feel more in control of their epilepsy. Do AEDs come in different forms?Most AEDs come in various forms:
The specialist or pharmacist will know what forms of AEDs are available. For babies, medication which can be dissolved in water can be given in a feeding bottle or with a special oral syringe. It may be better to give medication after a meal, not in the food itself, as your baby may not eat all their food. Medications need to be carefully prepared by your pharmacist and you can talk to them about how to give it. What should I do if my child is sick? If your child is sick or has diarrhoea, this could affect how their medication is absorbed (how it gets into their body). General guidelines are that if your child is sick:
If your child is ill for a long time, or you are concerned about their medication, it may help to talk to their GP or specialist. The P.I.L. may have more information. Is it OK to take other types of medication with AEDs? Some other medications interact with AEDs. Although there is usually no problem with paracetemol, Calpol, Duprol or Nurofen, it is often best to check with your child’s GP or pharmacist before giving them any other medication. This includes both prescribed and over-the-counter treatments, such as painkillers or cough medicines. Monitoring and testsHow are AEDs monitored? Medication needs to be closely checked or monitored to see how well it is working. This is usually done by checking if your child is having any seizures and whether they have any side effects. Keeping a diary of when seizures happen can help your child’s specialist to see if their medication is working or if seizures happen at any particular time. Blood tests are used to check the amount of AEDs in the blood stream. They are only needed in certain situations, for example:
An alternative to blood level testing is to test saliva levels. This can be useful for children and people with learning disabilities because it is easier that taking blood and is painless. How often should tests take place? If blood and liver function tests are necessary they should be carried out before drug treatment starts and then every one to two years. This may happen more frequently if there is concern that a side effect may be occurring. Are other tests needed? Some AEDs can affect how the liver works, and liver-function tests are needed. This test is usually done before starting the AED and then every one to two years afterwards, or more often if there is concern that the liver is being affected. My child has learning difficulties; does this make any difference to treatment?Epilepsy is treated and monitored in the same way for child with learning disabilities as for other children, but seizures can be more difficult to control in children with learning disabilities. Because of this, more than one drug may be needed. If more than one drug is taken, it is more likely that side effects, especially drowsiness, will happen. In children with learning disabilities, it can also be hard to tell if side effects are happening, or to tell the difference between side effects and the learning disability itself. This may be difficult if your child is not able to communicate or explain how they are feeling. If you have any concerns, you could talk these through with your child’s specialist or GP. Status epilepticusWhen a seizure lasts for more than 30 minutes, or when one seizure happens after another without recovery in between, it is known as status epilepticus - or status for short. 17 Status can happen in any type of seizure. When status happens in a tonic clonic (convulsive) seizure, this is a medical emergency and needs urgent treatment.
Having longer or more
frequent tonic clonic seizures often happens before status. Emergency medication for status epilepticus A supply of the emergency medication diazepam may be prescribed for children who have status epilepticus. Diazepam is given rectally (into the child’s bottom) to stop the seizure continuing. The dose of diazepam given depends on the child’s weight (see table of drugs for children). If your child has status and needs a prescription for diazepam, written instructions (called a protocol) should be written. This is done on an individual basis and so will be specific to your child. The protocol covers what dose to give, when to give it and what to do if this does not stop the seizure. The protocol should be updated as your child grows or if their epilepsy changes. You need to have training to be able to give the diazepam, either from a specialist, epilepsy nurse, GP or from NSE. Because diazepam can cause sedation or breathing difficulties, your child will need to be watched closely as they recover. More information about
training to give diazepam from NSE’s
training department. A medication called midazolam is sometimes used as an alternative to rectal diazepam. Midazolam is given into the mouth (called ‘buccal midazolam’). However, midazolam is not licensed for this use and so is not widely available. Like diazepam, if buccal midazolam is prescribed, a special protocol and training is needed to give it. Is there anything my child can carry that says they have epilepsy? ID cards, which can
be carried in a bag or pocket, are available from NSE. These have space
on them so that the details of the person’s epilepsy can be written on
it. Some people with epilepsy wear medical jewellery (bracelets, watches
and pendants), which say they have epilepsy on the back. This means if
a person has a seizure, someone can see from their jewellery that they
have epilepsy. This is also useful for medical staff if the person is
taken to hospital. Epilepsy is a very individual condition and children can respond differently to their treatment. The aim of treatment is to stop seizures from happening so children can carry on with their lives, and most children become seizure-free with AEDs. As epilepsy can change over time, it is useful for them to continue seeing their specialist regularly. Table of currently available drugs for children GlossaryAED - anti-epileptic drug, the medication taken for epilepsy. Dose - the amount of medication that is taken. Monotherapy - when a drug is taken on its own. Neurologist - a doctor who specialises in conditions that affect the brain. Paediatrician - a doctor who specialises in treating children. Parallel imports - when a drug is made abroad and then brought back into the UK. Patient information leaflet (P.I.L) - the small information leaflet that comes with each prescription of medication. Polytherapy - when more than one drug is taken. Protocol - written instructions about when and how to give a drug. Seizure control - this is when seizures stop happening (usually by taking medication). Also called seizure-free. Specialist - the paediatrician or neurologist, depending on the age of the person. Spontaneous remission - where seizures stop of their own accord. Syndrome - a type of epilepsy that has particular characteristics such as seizure type and pattern, a typical age when seizures start, and whether seizures are likely to stop. Treatment plan - a record of the number and types of AEDs taken, when to take them and what to do if they do not work or need adjusting or changing. (Also called a drug plan). Withdrawal - slowly stopping medication. UK
Epilepsy Helpline: 01494 601400 NSE gratefully acknowledges the contribution of the Institute of Child Health & Great Ormond Street Hospital for Children NHS Trust in producing this information. ©
The National Society for Epilepsy |
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