Medicines

Stiripentol for preventing seizures

This leaflet is for parents and carers about how to use this medicine in children. Our information may differ from that provided by the manufacturers, because their information usually relates to adults. Read this leaflet carefully. Keep it somewhere safe so that you can read it again.

Do not stop giving Stiripentol suddenly, as your child may have more seizures.

Name of medicine

Stiripentol

Brand name: Diacomit

Why is it important for my child to take Stiripentol?

It is important that your child takes stiripentol regularly so that they have fewer seizures.

What is Stiripentol available as?

  • Capsules: 250 mg, 500 mg
  • Sachets: 250 mg or 500 mg per sachet

When should I give Stiripentol

The Stiripentol is usually given twice each day. Give one dose in the morning and one in the evening. Ideally these times are 10–12 hours apart. For example, this could be between 7am and 8am and between 7pm and 8pm.

How much should I give?

Your doctor will work out the amount of Stiripentol (the dose) that is right for your child. The dose will be shown on the medicine label.

When you first start giving Stiripentol to your child, you will probably give them a low dose, which may be increased bit by bit over a few days or weeks. This helps your child to get used to the medicine. Your doctor will explain what to do.

It is important that you follow your doctor’s instructions about how much to give.

How should I give Stiripentol?

Capsules

  • Capsules should be swallowed whole with a glass of water. Your child should not chew the capsule. You can open the capsule and mix the contents into a teaspoonful of soft food (e.g. honey or jam). Make sure your child swallows it straight away, without chewing.

Granules

  • Dissolve the granules in a small glass of water or mix them with a small amount of soft food (e.g. honey or jam). Make sure your child swallows it all straight away, without chewing.

You need to give your child something to eat with Stiripentol, otherwise it may not work properly.
Do not give your child milk or dairy products (e.g. yogurt, cheese), fizzy drinks, fruit juice or foods/drinks that contain caffeine (cola, tea, coffee, hot chocolate) at the same time as Stiripentol.

When should the medicine start working?

It may take a few weeks for Stiripentol to work properly, so your child may still have their symptoms for a while. Continue to give the medicine as you have been told to by your doctor.

What if my child is sick (vomits)?

  • If your child is sick less than 30 minutes after having a dose of Stiripentol, give them the same dose again.
  • If your child is sick more than 30 minutes after having a dose of Stiripentol, do not give them another dose. Wait until the next normal dose.

If your child is sick again, seek advice from your family doctor, nurse, pharmacist, or hospital. They will decide what to do based on your child’s condition and the specific medicine involved.

What if I forget to give it?

If you usually give it twice a day: If you remember up to 4 hours after you should have given a dose, give your child the missed dose. For example, if you usually give a dose at about 7am, you can give the missed dose at any time up to 11am. If you remember after that time, do not give the missed dose. Give the next dose as usual.

Are there any possible side effects?

We use medicines to make our children better, but sometimes they have other effects that we don’t want (side effects).

Side effects you must do something about

Your child may lose their appetite and lose weight, and they may feel sick (nausea). Your child may feel drowsy (sleepy), or they may become irritable or aggressive and have difficulty sleeping. These effects should get better as your child’s body gets used to the medicine. If they don’t get better after 2–3 weeks, contact your doctor for advice.

Other side-effects you need to know about

  • Your child may also have problems falling asleep at night. This may or may not get better. If it causes problems, or if your child is losing a lot of sleep, contact your doctor for advice.

There may sometimes be other side effects that are not listed above. If you notice anything unusual and are concerned, contact your doctor. You can report any suspected side effects to a UK safety scheme at www.mhra.gov.uk/yellowcard

Can other medicines be given at the same time as Stiripentol?

  • You can give your child medicines that contain paracetamol or ibuprofen, unless your doctor has told you not to.
  • Check with your doctor or pharmacist before giving any other medicines to your child. This includes herbal and complementary medicines.

Epilepsy and pregnancy

  • Pregnancy presents a risk to both the mother with epilepsy and her unborn baby. If your daughter has sex, it is essential that she uses adequate contraception to prevent an unplanned pregnancy.
  • If your daughter is worried that she may be pregnant, it is important that she sees your family doctor as early as possible. Your daughter should keep taking her medication until she sees her doctor.

Stiripentol and pregnancy

  • Stiripentol may harm an unborn baby.
  • The oral contraeptive pill can be used safely by women or girls who are taking stiripentol.

Is there anything else I need to know about this medicine?

  • Stiripentol is used mainly for a particular epilepsy syndrome known as severe myoclonic epilepsy in infancy (also called Dravet’s syndrome).
  • Your doctor may decrease the dose of other medicines that your child is taking for epilepsy when they start taking stiripentol.

General advice about medicines

Advice about medicines for seizures

  • If your doctor decides to stop a particular medicine, they will discuss this with you. They will usually reduce the dose bit by bit.
  • It is best that your child always has the same brand of each medicine, as there may be differences between brands. Keep a record of which medicines your child has.
  • Try to give medicines at about the same times each day, to help you remember.
  • Do not give extra doses, as you may do harm.
  • Only give this medicine to your child. Never give it to anyone else, even if their condition appears to be the same, as this could do harm.
  • Make sure that you always have enough medicine. Order a new prescription at least 2 weeks before you will run out.
  • Make sure that the medicines you have at home have not reached the ‘best before’ or ‘use by’ date on the packaging. Give old medicines to your pharmacist to dispose of.

Do not suddenly stop giving any medicines for seizures to your child. If you are worried, contact your doctor but carry on giving the medicine to your child as usual.

If your child seems to have more seizures than usual, contact your doctor or epilepsy nurse.

Do not change the dose of any medicine without talking to your doctor first.

If you think someone else may have taken the medicine by accident, contact your doctor straight away.

Where should I keep this medicine?

  • Keep the medicine in a cupboard, away from heat and direct sunlight.
  • It does not need to be kept in the fridge.
  • Make sure that children cannot see or reach the medicine.
  • Keep the medicine in the container it came in.

Who to contact for more information?

Your child’s doctor, pharmacist or nurse will be able to give you more information about Stiripentol and about other medicines used to treat epilepsy.

England: NHS 111

Tel 111

www.nhs.uk

Scotland: NHS 24

Northern Ireland: NI Direct

Wales: NHS Direct

Tel 111 (free) or 0845 46 47 (2p per minute)

111.wales.nhs.uk/

Epilepsy Action

0808 800 5050

www.epilepsy.org.uk

Epilepsy Society

Young Epilepsy

Copyright disclaimer

Version [2]. © NPPG, RCPCH and WellChild, all rights reserved. Review by December 2016.

The primary source for the information in this leaflet is the British National Formulary for Children. For details on any other sources used for this leaflet, please contact us through our website, www.medicinesforchildren.org.uk.

We take great care to make sure that the information in this leaflet is correct and up-to-date. However, medicines can be used in different ways for different patients. It is important that you ask the advice of your doctor or pharmacist if you are not sure about something. This leaflet is about the use of these medicines in the UK, and may not apply to other countries. The Royal College of Paediatrics and Child Health (RCPCH), the Neonatal and Paediatric Pharmacists Group (NPPG), WellChild and the contributors and editors cannot be held responsible for the accuracy of information, omissions of information, or any actions that may be taken as a consequence of reading this leaflet.