All medicines can cause side-effects. The side-effects caused by the anti-HIV drugs used today are generally mild and lessen or go away completely over time. Children tend to cope with HIV treatment very well and have few side-effects.

Before your child starts treatment with a new drug, the doctor or pharmacist will provide information about possible side-effects and some tips on how to cope with them.

Common side-effects of the drugs used to treat HIV are diarrhoea, feeling or being sick, and headache.

Many of these side-effects will only last for a week or two, so try to encourage your child to keep taking their medication until they notice the side-effects reducing.  The clinic may give you anti-sickness or anti-diarrhoea medication when starting HIV treatment so you can give them to your child if needed.

If your child vomits within an hour of taking his or her medication, there will not have been enough time for the pill/liquid to be absorbed into the body, so the dose should be repeated.

If you have any concerns when your child is starting medication, call your clinic and speak to a specialist nurse or your child’s doctor at your clinic for advice; don’t wait or worry. Do not stop giving your child their HIV medication without talking to the clinic team.

Before starting treatment with abacavir (Ziagen, also in the combination pills Kivexa and Trizivir) your child should have the HLA B*5701 test to see if he or she has the gene associated with reactions to the drug. If the test is positive, then abacavir should definitely not be taken. If the test is negative it’s probably safe to use abacavir, but you should still watch your child closely to see if they develop symptoms of hypersensitivity.

Symptoms of hypersensitivity include:

• Rash
• Fever
• Diarrhoea and stomach pain
• Feeling generally unwell
• Cough
• Muscle pain
• Headache
• Feeling or being sick
• Sore throat

Symptoms of reaction to abacavir usually develop within the first two to three weeks of treatment with the drug. The symptoms steadily get worse. If you think your child is reacting to abacavir, contact the HIV clinic immediately, or go to casualty (A&E) if your clinic is closed. Don’t stop treatment with abacavir until the doctor advises you to.

If your doctor advises you to stop giving your child abacavir, make sure you never give it to your child again as this can be very dangerous.

Rash is also a symptom of reaction to nevirapine (Viramune). In most cases this goes away over time and isn’t anything to worry about. But in rarer cases it can cause serious health problems. It’s important that you mention this to your child’s doctor if it develops so it is properly monitored.

A third drug, etravirine (Intelence) has also been linked to rare, but very serious, allergic reactions, which also involve a severe rash. Etravirine is not currently licensed for use in children.

Some anti-HIV drugs can cause longer-term side-effects. These include increases in blood fats, and liver and kidney problems. Although these may not be an issue yet, factors such as family history may affect which treatment is most suitable for your child.

Part of your child’s HIV care will involve regular blood tests to see if these problems are developing. It’s usually possible to do something about them.

Treatment with some anti-HIV drugs such as AZT (zidovudine, Retrovir) or ritonavir (Norvir) have been linked to body fat changes including gradual fat loss from the face, limbs and buttocks (this is called lipodystrophy). This isn’t dangerous, but it can affect the way a person looks and can affect their self-confidence.

Body fat changes can be very distressing in young people who are often very conscious of their body image. If your child needs to take drugs which may cause lipodystrophy, he or she will be closely monitored to see if they are experiencing fat loss.

Treatment is available to help restore fat loss from the face. It’s been widely used in adults and has been shown to be safe and effective. Your clinic will be able to tell you if it’s a suitable option for your child.

Talking to a child psychologist or a counsellor about this may also be helpful for your child.

HIV treatment is meant to make people better, so side-effects aren’t something that have to be endured if they are quite severe or if they don’t reduce after the first few weeks. If your child isn’t coping with a side-effect you should mention this at the clinic. Something can usually be done about side-effects.

Changing treatment might be appropriate in some cases. You’ll need to consider the pro’s and con’s of this - for example, the side-effects of new treatments and how easy they are to take.

The NAM booklet Side-effects provides more information on the range of side-effects that anti-HIV drugs can cause and how to cope with them. Although it’s been written with adults in mind, much of its content also applies to children.