Medicines

Sodium benzoate for urea cycle disorders

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.

Name of medicine

Sodium benzoate

Why is it important for my child to take Sodium benzoate?

When protein from food is digested, it is broken down into small molecules called amino acids, which are needed by all the cells in the body. If there is too much amino acid in the blood, it is turned to ammonia in the liver, and then into uric acid, which the body gets rid of in urine (wee).

Urea cycle disorders are inherited disorders where ammonia is not turned into uric acid properly and so it builds up in the blood. Your child needs to take sodium benzoate regularly to help reduce the levels of ammonia in their body.

What is Sodium benzoate available as?

  • Tablets: 500 mg
  • Capsules: 50 mg, 250 mg, 400 mg, 500 mg
  • Liquid medicine: 500 mg in 5 mL, 1 g in 5 mL, 1.5 g in 5 mL
  • Powder

All the above products have to be ordered specially by your pharmacist.

When should I give Sodium benzoate

Sodium benzoate is usually given three or four times a day.

  • Three times a day: This should be in the morning, early afternoon and at bedtime. Ideally, these times are at least 6 hours apart, for example 8am, 2pm and 8pm.
  • Four times a day: This is usually first thing in the morning, at about midday, late in the afternoon and at bedtime. Ideally, these times should be at least 4 hours apart, for example 8am, midday, 4pm and 8pm.

Give the medicine at about the same time(s) each day so that this becomes part of your child’s daily routine, which will help you to remember.

How much should I give?

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

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

How should I give Sodium benzoate?

Tablets

  • Tablets should be swallowed with a glass of water, squash or juice. Your child should not chew the tablet.

Capsules

  • Capsules should be swallowed with a glass of water, squash or juice. Your child should not chew the capsule.

Liquid medicine

  • Shake the medicine well. Measure out the right amount using an oral syringe or a medicine spoon. You can get these from your pharmacist. Do not use a kitchen teaspoon as it will not give the right amount.
  • The liquid can be mixed with a fruit drink, feed or milk.

Powder

  • Sprinkle or stir the powder into a small amount of soft food (e.g. yoghurt or feed) or a small drink of water or milk. Do not use acidic or fizzy drinks such as fruit juice or lemonade. Your child should then swallow the food or drink straight away, without chewing. Make sure they take it all.

When should the medicine start working?

This medicine should start to work straight away. You may not see an obvious difference but your child should start to feel better as the amount of ammonia in their body falls.

What if my child is sick (vomits)?

  • If your child is sick less than 30 minutes after having a dose of Sodium benzoate, give them the same dose again.
  • If your child is sick more than 30 minutes after having a dose of Sodium benzoate, 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 miss a dose, wait until the next normal dose. Do not give the missed dose.

What if I give too much?

You are unlikely to cause harm if you give an extra dose of Sodium benzoate by mistake. If you are concerned that you may have given too much, contact your doctor or local NHS services (details at end of leaflet). Have the medicine or packaging with you if you telephone for advice.

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).

The following side-effects should decrease with time; if you are worried, or any of them are still a problem after one week, contact your doctor, but continue to give sodium benzoate:

  • Your child may feel sick (nausea) or be sick (vomit) when they first start to take sodium benzoate. Giving the medicine with some food or milk may help
  • Your child may feel less hungry (lose their appetite). Encourage them to eat small meals often
  • Your child may feel sleepy, tired or weak, or irritable.

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 Sodium benzoate?

  • 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.

General advice about medicines

  • Try to give medicines at about the same times each day, to help you remember.
  • 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.
  • If you think someone else may have taken the medicine by accident, contact your doctor for advice.
  • Make sure that you always have enough medicine. It may take up to 3 weeks for your pharmacist to order Sodium benzoate powder or medicine, so make sure you order a new prescription at least 3 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.
  • If you are not sure a medicine is working, contact your doctor but continue to give the medicine as usual in the meantime. Do not give extra doses, as you may do harm.

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?

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/

Metabolic Support UK

Copyright disclaimer

Version [1]. © NPPG, RCPCH and WellChild, all rights reserved. Review by March 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.