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Anti-HIV treatment for babies and children
   Last updated: 08.03.05
 
Anti-HIV drugs are available for the treatment of babies and children. Although the use of anti-HIV drugs has been studied less in babies and children than in adults, there is now a lot of evidence that it works well. However, as in adults it can cause unpleasant side-effects and needs to be taken at the right time and in the right way to work properly.

There are fewer drugs available for the treatment of HIV in babies and children than for adults. Details of the drugs that can be used in babies and children are provided in table.

The use of combinations of three or more anti-HIV drugs, often called highly active antiretroviral therapy, or HAART for short, in babies has been shown to prevent illness and death in the first 18 months of life.

HAART has also been shown to be effective in older infants and children, many of whom are living longer, healthier lives thanks to anti-HIV treatment.

The reduction in illness and death in babies and children with HIV in the UK since treatments became available was recently confirmed by a large study that found that rates of illness and death fell by over 80%.

As with adults a decision on when is the best time to start treatment in babies and infants is made on an individual basis. However, if an infant or child is ill because of HIV, or has a rapidly falling CD4 count and high and rising viral load, then anti-HIV treatment should be started. Using the PENTA calculator mentioned earlier, it’s recommended that a baby or child start anti-HIV treatment if he or she has a risk of developing AIDS of 10% or more in the next year.

Anti-HIV treatment should be started in children before their immune system is damaged to such an extent that they are vulnerable to serious, potentially life-threatening illnesses. In adults this is when the CD4 cell count falls to about 200. In children the numbers are different. In infants aged under 12 months, a CD4 count of 750 is equivalent to an adult count of 200. The figure is 500 for children aged one to five. After the age of six, as in adults, a CD4 cell count of about 200 indicates severe immune damage and treatment should be started. Some centres use the CD4 count percentage as a guide.

The doses of anti-HIV drugs that babies and children receive are different to those given to adults. The dose may increase over-time as doses are often calculated either according to a child’s weight or to their surface area (which is looked up on a special chart). Children might also need to take larger doses of a drug than an adult – this is because babies and children’s bodies process, or metabolise drugs, more quickly than adults.

In some children it may be necessary to use four drugs rather than three when starting treatment because children have very high viral loads. Three NRTIs plus an NNRTI is the usual combination. This means that protease inhibitors can be used if the first treatment fails. NNRTIs are preferable for children because they have liquid formulas that taste okay and don’t upset the stomach and cause diarrhoea.

Side-effects
Anti-HIV treatment can cause unpleasant side-effects in babies and children, including lipodystrophy — changes in blood fats and body shape. Lipodystrophy tends to be more common in older children, probably because of the amount of time they have been taking treatment. For more information see the booklet Lipodystrophy in this series.

Side-effects, such as feeling or being sick, generally feeling unwell, and diarrhoea can cause problems in children. As with adults, if HAART is causing severe side-effects, then consideration should be given to changing the drug or drugs which are causing the problems, if other treatment options are available.

But on the plus side there is also some evidence that side-effects may be less likely to occur in children, and when they do happen children cope better with them than adults. This could be because children are less likely to have lifestyle factors such as drinking or smoking that make side-effects worse.

Table 1 — Anti-HIV drugs available for the treatment of HIV-positive children
Nucleoside analogues (NRTIs)
Drug name: AZT, zidovudine, Retrovir
Approved for: Infants and children aged three months and over (but also given to babies to prevent mother-to-baby transmission of HIV)
Liquid formula: Yes


Drug name: ddI, didanosine, Videx
Approved for: Infants and children
Liquid formula: Yes


Drug name: 3TC, lamivudine, Epivir
Approved for: Infants and children aged three months and over
Liquid formula: Yes


Drug name: d4T, stavudine, Zerit
Approved for: Infants and children aged three months and over
Liquid formula: Yes


Drug name: abacavir, Ziagen
Approved for: Infants and children aged three months and over
Liquid formula: Yes


Drug name: FTC, emtricitabine, Emtriva
Approved for: Infants and children aged four months and over
Liquid formula: Available from late spring 2005.

Drug name: 3TC/AZT combined, CombivirTM
Approved for: Adults and children aged over 12 years.
Liquid formula: No

Drug name: 3TC/abacavir combined, KivexaTM
Approved for: Adults and adolescents who weigh over 40kg
Liquid formula: No



Non-nucleoside analogues (NNRTIs)
Drug name: nevirapine, Viramune
Approved for: Infants and children aged two months and over
Liquid formula: Yes


Drug name: efavirenz, Sustiva
Approved for: Children three years or older or weighing over 10kg
Liquid formula: Yes


Protease inhibitors (PIs)
Drug name: amprenavir, Agenerase
Approved for: Children over four years old
Liquid formula: Yes


Drug name: indinavir, Crixivan
Approved for: Children aged four years and over
Liquid formula: No


Drug name: lopinavir/ritonavir, Kaletra
Approved for: Children aged two years and over
Liquid formula: Yes


Drug name: nelfinavir, Viracept
Approved for: Infants and children over three years old
Liquid formula: Powder to make into a drink, or tablets can be crushed but high rate of diarrhoea reported.


Drug name: ritonavir, Norvir
Approved for: Children aged two years and over
Liquid formula: Yes, but unpleasant taste

Fusion inhibitor
Drug name: T20, enfuvirtide, FuzeonTM
Approved for: Children aged six years and over
Liquid formula: Administered by injection

Adherence
To work properly, anti-HIV drugs need to be taken at the right time and in the right way at least 95% of the time. Many adults with HIV find this difficult to achieve, and it can be even more difficult in children, who for example might not want to take unpleasant tasting medicines, or who might find it difficult to follow the restrictions on food which some drugs demand.

Essentially, a child will rely on its parents or other adult care-giver to make sure it receives and takes its medicines. To ensure that this happens, it is important to consider how the treatment needs of your child will affect you and your other family members and come up with plans to manage this. Don’t forget that your own health also matters, and if you are also taking anti-HIV drugs, make a plan to ensure that you are able to do so.

There is no single adherence tip that will work for all children. Instead, there may be some strategies that are particularly useful depending on the age of the child.

For children having great difficulty swallowing medicines, it is possible to fit a special tube (gastrostomy tube) into the stomach into which medicines can be directly injected. This means the child does not have to swallow medications with unpleasant tastes and can be especially helpful for toddlers who cannot understand why they have to take something which does not taste pleasant.

Teaching children to swallow pills is another way to avoid the taste of medicines. Children as young as five can learn a good technique for pill swallowing, and the team at the HIV clinic can help to teach them.

Pills are also much easier to carry than liquid if you are travelling, or if you do not want others to see you are on mediciations. Children on sleepovers or school trips can carry them discreetly in a little box in their wash bag and swallow them in the bathroom unobserved.

Once daily treatment may be a way of boosting adherence in older children. Seeing other children taking medicine is also likely to be helpful for older children.

Issues regarding adherence can change over time. For example, your child may want to go around to friends for meals or on school trips meaning overnight stays. Making sure that your child takes medicines at these times could be very difficult or impossible. In addition, if your child takes medication in front of friends, then he or she could be asked questions about why they are doing so.

Making plans to deal with these situations can also present problems. For example, you might ask an adult to make sure your child takes its medicines, but this could lead to pressure to disclose your child’s health status.

Your clinic should be able to provide advice on how to deal with problems that you will face in getting your child to take medicines at the right time and in the right way.

To find out more about adherence, see the Adherence booklet in this series.

Clinical trials
Trials into the safety and effectiveness of anti-HIV drugs need to include babies and children. If a trial is recommended as being possibly suitable for your baby or child, you should be given written information to take away and read, and should have the opportunity to talk through the pros and cons of the study with a doctor or nurse involved in the study.

Wherever possible you should involve older children in discussions about whether or not they want to join the trial.

Remember, it is entirely up to you if you want to join a trial. It’s perfectly okay to say no. The standard of treatment and care your child (or you) receive will not be affected.

To find out more about trials, see the booklet, Clinical Trials in this series.