3 Management of children with HIV infection

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When you have completed this chapter you should be able to:

  1. Describe family-centred care.
  2. Plan routine clinical care.
  3. Provide immunisation.
  4. Provide cotrimoxazole prophylaxis.
  5. Monitor and support growth and nutrition.
  6. Monitor neurodevelopment.
  7. Screen for HIV-associated infections.
  8. Monitor clinical and immunological staging.
  9. Manage adolescents with HIV infection.
  10. Advise on disclosing HIV status to children.
  11. Decide when to start antiretroviral treatment.

Family-centred care

3-1 What is the management of children with HIV infection?

All aspects of the health and emotional wellbeing of an HIV-positive child must be addressed, whether or not the child is receiving antiretroviral treatment. An enormous amount can be done for an HIV-infected child even if antiretroviral treatment is not available. The general management of all HIV-infected children is the same.

If HIV infection is excluded in an HIV-exposed child, the child should be referred to a well-child clinic and requires no further follow up for HIV infection. With the use of antiretroviral prophylaxis perinatally, most HIV-exposed infants will not be infected.

3-2 Where should children with HIV infection be managed?

Every effort must be made to keep HIV-infected children at home with their family and to manage them at a local primary-care clinic. They should only be referred to a special HIV clinic or hospital if there are clear indications.

HIV-infected children should be managed at home if at all possible.

Ideally the community-based primary-care clinic should meet the needs of most HIV-positive children. This requires the integration of many different services (a ‘one-stop shop’). Care at a primary health clinic is usually provided by nurses and not doctors.

3-3 What is family-centred care?

Children should always be seen as a member of a ‘family’ and not simply as an individual. Many of the health problems of children are a direct result of problems within the family (poverty, neglect, abuse, poor education). Therefore the management of any child must take into consideration the family and home environment. Family-centred care (or family-oriented care) is the care of a child as a member of a family. ‘Do not forget the family!’

Ideally the whole family should be cared for by the same staff at the same clinic.

Routine clinical care

3-4 What are the main steps in managing children with HIV infection?

3-5 What routine clinical care is needed?

Both HIV-positive and negative children should receive routine clinical care. This is provided at a local primary-care clinic. The ‘well-baby clinics’ and ‘under-5 clinics’ must be integrated into other health services such as maternal care, immunisation and managing sick children.

Routine care includes:

3-6 What special care is needed by HIV-exposed infants?

All infants born to HIV-positive mothers are at risk of being infected themselves with HIV. It is important to determine whether these HIV-exposed infants are HIV infected or not as soon as possible after birth. This is possible with PCR testing before the age of 18 months:

A positive PCR test should always be confirmed with a second PCR test before HIV infection is diagnosed in a child less than 18 months of age. At 18 months of age all HIV-exposed infants who have previously had negative PCR tests should be tested with a rapid HIV antibody test.

Once HIV infection has been excluded, these infants require only routine care at a well-baby clinic. However, until HIV infection has been excluded, HIV-exposed infants should be followed-up together with the HIV-infected infants.

If a PCR test result is reported as indeterminate then the result must immediately be discussed with an experienced clinician or laboratory specialist as further more advanced testing is required.
Discordant test results occur when the first PCR result is positive but the confirmatory PCR test is negative. All discordant results must immediately be discussed with an experienced clinician or laboratory specialist as further testing is required to finalise the child’s HIV status.

3-7 When should HIV-exposed infants be followed up?

Until HIV infection has been excluded, HIV-exposed infants must be closely followed:


3-8 Is it safe to give routine immunisations to infants who may be infected with HIV?

It is safe to give most routine immunisations (Expanded Programme on Immunisation) to well HIV-exposed infants in the first months of life. Ideally, BCG should not be given to children known to be HIV infected. However, giving BCG to all infants after delivery, irrespective of their HIV status, is still recommended in countries where tuberculosis is common.

Other routine immunisations should be given to all HIV-infected children even if they have signs of HIV disease.

HIV-exposed newborn infants should receive routine immunisations.

The incidence of disseminated BCG in HIV-infected children, if immunised, is approximately 1000 per 100 000 live births. Therefore some HIV experts feel that HIV-exposed infants should not receive BCG unless a PCR screen at birth is negative, however this recommendation does not apply to South Africa.

3-9 What additional immunisation may be useful?

Routine pneumococcal and rotavirus immunisation has been introduced in many countries where HIV infection is common, to reduce the frequency and severity of pneumonia and gastroenteritis in HIV-infected children.

Annual influenza immunization is recommended for all HIV infected children.

Primary prophylaxis

3-10 What is primary prophylaxis?

Most of the morbidity and mortality in HIV-infected children are due to HIV-associated infections. Primary prophylaxis is the use of antibiotics to prevent some of these infections. Therefore primary prophylaxis is an important part of healthcare during the asymptomatic phase of HIV infection.

Secondary prophylaxis is the use of antibiotics to prevent recurrences of HIV-associated infections, i.e. in children who have previously had that HIV-associated infection.

Primary prophylaxis is the use of antibiotics to prevent HIV-associated infections.

3-11 What primary prophylaxis should be provided?

  1. Cotrimoxazole. This broad-spectrum antibiotic helps prevent:
    • Pneumocystis jiroveci pneumonia (PJP – previously known as PCP)
    • Common bacterial infections such as pneumococcal pneumonia
    • Infection with non-typhoid Salmonella
    • Diarrhoeal disease due to Isospora and Cyclospora
    • Cotrimoxazole also reduces the risk of infection with falciparum malaria and Toxoplasmosis.
  2. All HIV-infected children irrespective of age with a close or household TB contact should be given post-exposure isoniazid (INH) prophylaxis for 6 months. Pre-exposure INH prophylaxis is not recommended for HIV-infected children in South Africa. Always exclude active tuberculosis before starting TB prophylaxis.
Cotrimoxazole consists of a combination of sulfamethoxazole and trimethoprim.
Post-exposure prophylaxis is defined as giving patients prophylaxis after they have been exposed to an infected contact. Pre-exposure prophylaxis is giving prophylaxis before exposure to an infection.

3-12 How effective is primary prophylaxis with cotrimoxazole?

It is very effective in reducing illness and deaths due to Pneumocystis pneumonia and common bacterial infections. Pneumocystis pneumonia is the main cause of death in HIV-infected infants, especially infants under six months of age. Pneumocystis infection is particularly common in Africa.

The prophylactic use of cotrimoxazole is simple, cheap, well tolerated and lifesaving. It forms a very important part of the management of HIV-infected children and can halve the mortality from HIV-associated infections.

Cotrimoxazole prophylaxis forms a very important part of the management of HIV-infected children.

3-13 Which children should receive cotrimoxazole prophylaxis?

3-14 When should cotrimoxazole prophylaxis be stopped?

HIV exposed infants should have cotrimoxazole prophylaxis from six weeks until HIV infection is excluded.

3-15 How should cotrimoxazole prophylaxis be given?

Infants should be given cotrimoxazole syrup. Older children may be given single-strength tablets. WHO recommends a daily dose. The daily dose depends on the child’s weight.

Table 3-1: Daily dose of cotrimoxazole by weight band

Weight Daily dose
3-5.9 kg 2.5 ml paediatric suspension
6-13.9 kg 5 ml paediatric suspension or ½ regular strength tablet
14-24.9 kg 10 ml (or 1 regular strength tablet)
25 kg and above 2 regular strength tablets
Several alternative cotrimoxazole regimens are effective. However, the above regimen is preferred.

3-16 How common are side effects to cotrimoxazole?

Side effects are uncommon in children. The commonest side effects are skin rashes, which usually occur in the first few weeks of treatment. These are usually mild erythematous rashes. However, they can be serious. Parents must stop the cotrimoxazole and bring the child to the clinic if the child develops a generalised, maculopapular rash, skin blisters or mouth ulcers, as these are the signs of serious hypersensitivity to the drug.

Cotrimoxazole may rarely cause hepatotoxicity, bone marrow suppression and anaphylaxis. Children with G6PD deficiency should not be given cotrimoxazole or dapsone as these drugs can cause acute haemolysis.

3-17 Should children receiving cotrimoxazole be routinely monitored for side effects?

A careful watch should be made for a rash. Routine laboratory tests are not needed.

3-18 What can be done if children cannot receive cotrimoxazole?

Children who have developed side effects to cotrimoxazole should be given dapsone instead. The dose of oral dapsone is 2 mg/kg daily up to an adult dose of 100 mg daily. A solution of crushed tablets is used. Unfortunately dapsone is not as effective as cotrimoxazole in preventing Pneumocystis pneumonia and it does not provide prophylaxis against other organisms.

If the side effects to cotrimoxazole are only moderate or severe (grade 2 or 3) the child can be referred to an antiretroviral centre for desensitisation with low doses of cotrimoxazole. Cotrimoxazole should never be given again after a potentially fatal (grade 4) reaction.

Nutrition and growth

3-19 Why is good nutrition so important in children with HIV infection?

In all children, good nutrition plays an important role in helping to maintain the normal functioning of the immune system. In contrast, malnutrition (undernutrition) weakens the immune system. Therefore, poor nutrition is especially dangerous in HIV-infected children, placing them at even greater risk of HIV-associated infections. Unfortunately, children with HIV infection are often undernourished.

Good nutrition is an important part of managing children with HIV infection.

3-20 Why is undernutrition common in children with HIV?

3-21 How is the nutritional state routinely monitored?

Always look carefully for missed infections in undernourished children (especially tuberculosis). Infections often lead to a rapid deterioration in the child’s nutritional state.

3-22 How can parents improve their child’s nutrition?

It is important that parents are aware of the importance of good nutrition and have the knowledge to give their children the correct foods. The nutritional value of meals can be improved by:

A balanced, mixed diet need not be expensive.

3-23 What vitamin supplements are necessary?

Vitamin A is important in maintaining a healthy immune system. All children with HIV infection should be given oral vitamin A supplements.

Although a standard paediatric multivitamin supplement 5 ml daily is often recommended, this has not been shown to be necessary unless the child is undernourished.

Zinc supplements (10 mg elemental zinc as zinc sulphate daily) from 6 months of age reduces morbidity from diarrhoea.

3-24 Is regular deworming important?

Yes. It is important to regularly deworm all young children, but especially children with HIV. Deworming every 6 months is recommended for children between the ages of 1 and 5 years in communities with poor hygiene and inadequate sanitation (poor toilet facilities). This should be done even if there is no history of roundworms in the stool. Medication is usually given at the local primary-care clinic or in schools. Deworming has been found to improve the learning capacity and growth of school children.

Mebendazole is the drug of choice. Albendazole is more expensive. Both these drugs are highly effective for roundworms. The dose for deworming is:

3-25 What is the importance of teeth care?

Dental care is important as dental caries are very common in children with HIV. Bad teeth may also reduce nutrition intake. Daily brushing of the teeth and restriction of sweetened food and drinks helps to keep the teeth healthy. Most children cannot brush their own teeth adequately until the age of seven years. Therefore, the caregiver should do the brushing with a gentle action, using a soft toothbrush. If the caregiver cannot afford toothpaste, salt may be used. Children with dental caries should be referred to a dentist for treatment.

3-26 What should be done if a child is failing to thrive?

3-27 How can nutrition be supported?

Children who fail to thrive despite optimal medical treatment may require additional nutritional support. Ideally they should be assessed by a dietician. Additional protein and calorie intake should be considered up to 150% of the daily recommended allowance.

3-28 Why is regular exercise important?

Although rest is important, children also need regular exercise to grow and develop normally. Most well HIV children can play sport normally. Play is important for all children.

It is essential that children with HIV mix with other children in play groups and at school. They should attend normal schools as they are not a risk to HIV-negative children.

Monitoring neurodevelopment

3-29 How should neurodevelopment be monitored?

Neurodevelopment as well as physical growth should be routinely monitored in all children, but especially children with HIV infection. Developmental milestones are used for the routine monitoring of neurodevelopment. The development screening guideline in the child’s Road-to-Health booklet should be used to monitor neurodevelopment and identify children with clinically significant neurodevelopmental delay who require referral.

3-30 Why are delayed milestones important to detect?

One of the first and most important clinical features of symptomatic HIV infection in children is a delay in developmental milestones. Children with advanced HIV disease may also have a slowing of head growth (head circumference).

3-31 Why do children with HIV infection often have delayed milestones?

3-32 When should neurodevelopmental screening be done?

Neurodevelopmental screening of all children including HIV exposed and HIV infected children should be performed at 14 weeks, 6 months, 9 months, 18 months, 3 years and 5 to 6 years of age.

Screening for HIV-associated infections

3-33 Why is it so important to screen for HIV-associated infections?

Because HIV-infected children usually present clinically with an HIV-associated infection. These infections are often the final cause of death. Therefore it is vitally important that HIV-associated infections are detected and diagnosed as soon as possible so that early treatment can be started.

3-34 How should you screen for HIV-associated infections?

By taking a careful history and performing a good clinical examination at every follow-up visit. Important questions to ask (‘red flags’) are:

Important clinical signs are:

Any child with a suspected or obvious HIV-associated infection may require appropriate investigation and treatment, or be referred immediately.

Care of adolescents with HIV infection

3-35 What is an adolescent?

The WHO defines adolescence as young people between the ages of 10 and 19 years. Adolescence is the time of physical, emotional and psychosocial change from childhood to adulthood. Adolescents require special care as their needs are different from those of both children and adults. The first signs of puberty (breast buds, testicular enlargement and pubic hair) usually indicate that the child should be regarded as an adolescent.

Adolescence is the time of physical, emotional and psychosocial change from childhood to adulthood.

3-36 Why are the needs of adolescents different?

Because they are growing rapidly, becoming sexually mature, and undergoing major emotional, psychological and social changes.

The WHO recommends the use of paediatric clinical staging charts and criteria for starting antiretroviral treatment for adolescents younger than 15 years of age and adult clinical staging charts and starting criteria for adolescents who are 15 years of age or older. Paediatric doses of antiretroviral drugs are usually recommended for adolescents in early puberty (Tanner stages 1 to 3) and adult doses for adolescents in late puberty with full physical maturation (Tanner stage 4 and 5).

Tanner stages 1 to 3 includes growth spurt, but only early signs of breast and genital development, while stages 4 and 5 are almost complete sexual maturation.

3-37 Why do adolescents have greater health risks?

3-38 Which adolescents may have HIV infection?

3-39 Which adolescents are most sexually vulnerable?

Boys usually have an earlier sexual debut (first experience) than girls. However, the prevalence of HIV infection is much higher in adolescent girls than boys, as young girls usually have older male partners. Girls, especially homeless or orphaned girls, may also be sexually abused or sell/swap sex for financial or other favours. The immature cervix is easily infected by HIV.

During adolescence girls are at higher risk of HIV infection than boys.

3-40 What is a youth-centred approach to HIV counselling?

Every effort should be made to meet the special needs of adolescence. This is best done at a youth centre. This is a clinic where the facilities, staffing and care are designed to make it user-friendly to both HIV-positive and negative adolescents. The features of a youth centre are:

If there is no youth centre, general HIV clinics should at least be adolescent friendly. The staff usually consists of nurses, doctors, counsellors, social workers and psychologists who work together as a multidisciplinary team. It is hoped that more youth centres (adolescent-friendly centres) will be opened in future.

An adolescent-friendly approach with peer support is very important.

3-41 How can adolescents protect themselves from HIV infection?

All adolescents must have sex education and be given the life skills to protect themselves and others from HIV infection. This should be taught in the home, schools, peer groups and health services. They need to become confident and have the knowledge to take responsibility for their lives.


3-42 Should HIV-infected children be told their HIV status?

Yes, but only when they have reached an age and stage of maturity when they can understand and handle this information. Revealing a child’s HIV status is a process over a number of years and not a once-off event. It can be compared to telling an adopted child the details of their parents and the adoption, or providing a child with sex education. They are provided with a little information at a time in a step-wise fashion. This is best done by simply and honestly answering their questions. It can be frightening and confusing to give too much detailed information too soon.

Parents often find this difficult and need the advice and support of health professionals. Failure of full disclosure by the time adolescence is reached can result in emotional difficulties, a lack of trust in the parents and health workers, and poor adherence. Every effort should be made to get the parents to agree to the disclosure.

It is important to give children information about their HIV status when they reach an appropriate age to accept the facts.

3-43 At what age should children be given information about their HIV status?

HIV-infected children often have a developmental age below their age in years. This should always be taken into consideration when counselling. Be led by the child’s questions and use language that the child can understand.

3-44 Who should tell children about their HIV status?

Usually parents are afraid but still prefer to provide this information themselves. They may need advice, encouragement and support from health workers. Some parents have difficulty with guilt and denial about their own infection and transferring HIV to their children.

Case study 1

An HIV-positive mother is told at the local clinic that it will be dangerous to immunise her six-week-old infant. She is asked to come back when the infant is three months old. No medications are given as the infant appears healthy.

1. Should all children born to HIV-positive mothers receive routine immunisations?

Yes, they can be fully immunised, including BCG immunisation.

2. What medications should this child have received?

Prophylactic cotrimoxazole from 6 weeks. This can be stopped if HIV infection is excluded with a negative PCR test.

3. Why is this prophylaxis given?

Because it reduces the risk of Pneumocystis pneumonia. It also reduces the risk of some serious bacterial infections.

4. For how long should primary prophylaxis be continued in young children with HIV infection?

Usually for the first year of life and thereafter until immune recovery has occurred. The risk of Pneumocystis pneumonia is less in older children.

5. What is the important side effect of cotrimoxazole?

Rash. This is usually mild but can be severe and even life threatening, especially in adults. Therefore parents should be warned to return to the clinic immediately if the child develops a rash.

Case study 2

A mother and her two HIV-infected children attend a primary-care clinic for a routine follow-up appointment. The clinic practises family-centred care. She is concerned as her four-year-old daughter has lost weight recently. A neighbour said that the child may have worms.

1. What is family-centred care?

With family-centred care the whole family is taken into consideration when the child is seen. Many of the health problems in children are a direct result of family problems such as poverty, neglect and abuse. Therefore the family cannot be ignored.

2. How should growth be monitored?

By plotting the child’s weight on the Road-to-Health booklet. It is particularly important to chart this child’s weight as there is some concern that she has lost weight recently.

3. Why may an HIV-infected child lose weight?

4. Can worms be a problem in HIV-infected children?

Yes. Therefore they should be regularly dewormed every six months. Usually mebendazole or albendazole is used.

5. What vitamin supplements should this child receive?

Vitamin A.

Case study 3

An adolescent is seen by a general practitioner as she is embarrassed to attend the local clinic. The doctor diagnoses primary syphilis and is concerned that she is not practising safer sex. After counselling her, he performs a rapid test for HIV and this is positive.

1. When does a child become an adolescent?

The WHO defines adolescence as young people between the ages of 10 and 19 years. Adolescence is the time of physical, emotional and psychosocial change from childhood to adulthood. The first signs of puberty usually indicate that the child should be regarded as an adolescent.

2. Why do you think the patient is unhappy to attend the local clinic?

Because the clinic does not have a ‘youth-centred’ approach.

3. What could the clinic do to be more user-friendly to adolescents?

Train their staff to be adolescent-friendly by being welcoming, non-judgemental and to respect and understand the concerns of young people. Adolescents prefer an informal atmosphere and appreciate peer support groups.

4. How do you think this adolescent became HIV infected?

Almost certainly by sexual intercourse as she has another sexually transmitted infection. However, some perinatally HIV-infected children are now reaching adolescence.

5. Why are young women sexually vulnerable?

Because they often are still emotionally immature and inexperienced. Therefore they are at risk of abuse and may sell sex to older men for financial or other favours.

6. How can adolescents protect themselves from HIV infection?

By delaying sexual debut, limiting the number of sexual partners and always using a condom. In order to achieve this they need education about how to live a healthy lifestyle.

Case study 4

An HIV-infected woman asks a nursing friend how she should tell her young son that he also has HIV infection. He is starting to show the first signs of puberty.

1. Should children be told their HIV status?

Yes, but only when they have reached a stage of maturity when they are old enough to understand what this means and to emotionally handle the information. It is not helpful to provide too much information too soon. Older children have the right to know their status.

2. At what age should their HIV status be disclosed?

This should be a slow process starting when the child is young. As they grow older they can be given more information. Very young children need security and encouragement to take their medication. By the age of 5 most children can understand that they have a chronic illness and why they have to take regular medication. Older children can be given information about HIV and the implication this has in their lives. As this child is entering puberty he should be able to accept and understand the cause, clinical symptoms and prognosis of HIV infection.

3. Who should provide this information to children?

Their parents or carers if possible. Parents often find this difficult and need the advice and support of health workers.

4. What is the best way of providing HIV information to children?

By answering their questions simply and honestly.

5. Should this child have sex education?

Yes. This is very important so that he can prevent spreading HIV to others.

6. Who should be told that he is HIV-positive?

At this age only family and close friends. Children may need help and support in disclosing their HIV status.

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