Since the beginning of the HIV epidemic in the United States, over 9,400 children have developed AIDS. As of December 2004, about 5,500 American children were living with HIV or AIDS. Although these numbers are distressing, they make up only a tiny portion of pediatric HIV cases internationally. According to the UNAIDS Programme, 2.2 million children younger than 15 are living with HIV worldwide. In the year 2004 alone, 640,000 were diagnosed with HIV and 510,000 died of the disease.
In the United States, a disproportionate number of pediatric HIV cases are among minorities. About 60 percent of pediatric AIDS cases occur among African-American children, 23 percent among Hispanic children, and 17 percent among white children. Most American children with HIV live in inner cities, where they often experience poverty and limited medical care.
Effective medication is available to treat HIV/AIDS in children, but until recently, it was available only to children in the United States and other wealthy countries. In the past four years, however, expanding access to HIV treatment for children living in resource-poor settings has been an urgent priority for policy makers, governmental officials, and donor organizations around the world.
Acquiring The Virus
About 90 percent of children with HIV are infected by their mother while in the womb or during childbirth. If untreated, pregnant women with HIV have about a 25-percent risk of passing the virus to their unborn children. The disease can also be spread from a mother to her child through breast-feeding. In addition, children may contract HIV through blood transfusions or through sexual abuse by someone who is HIV-positive.
Adolescents with HIV are likely to have contracted the virus the way adults do, through unprotected sex, drug use or blood transfusions. A small but growing number of adolescents with HIV are survivors of in utero infection.
Practicing Prevention
Because the majority of pediatric HIV cases are the result of mother-to-child transmission in the womb or during birth, the best protection for the baby is for the pregnant mother to receive HIV treatment herself. The standard medication for pregnant women is highly active antiretroviral therapy (HAART) — a combination of three medications that are active against the HIV virus. If these medications decrease the viral load (amount of virus in the blood) effectively, the risk of a mother spreading the virus to her child can decrease from 25 percent to less than 1 percent. A Caesarean section, which limits the baby's exposure to the mother's blood and mucous membranes, can lower the risk of transmission among women who have higher viral loads.
Because breast-feeding significantly increases the risk of mother-to-child transmission, experts do not recommend it, especially in countries where formula and clean water are available, such as the United States.
For older children and adolescents, suggestions for prevention are the same as they are for adults: Don't expose yourself to bodily fluids of person who might be infected, practice safe sex and don't share needles.
Coping With Symptoms
Many children with HIV are asymptomatic, and they often remain so until they are of school age or sometimes until puberty. However, some HIV-positive children fail to develop normally. They don't grow or gain weight and are smaller than other children their age. They are slower to reach milestones, such as crawling, walking and talking. In addition, their cognitive abilities may be impaired, and they may have trouble in school.
Children very rarely develop Kaposi's sarcoma or toxoplasmosis, which are both common in HIV-positive adults. However, children are much more likely to develop chronic bacterial infections and the early onset of neurological deterioration. They are also at risk of developing lymphocytic interstitial pneumonitis, a lung ailment that is rare in adults. As with adults, Pneumocystis carinii pneumonia (PCP) is a common cause of death in HIV-infected children. HIV-positive children are also subject to the typical infections that healthy children have, but they experience these infections more often and more severely.
In HIV-positive adolescents, the development of HIV and its accompanying symptoms tends to mirror that of adults.
Establishing A Diagnosis
If you are a mother with HIV, your child should be tested immediately after birth and several times after that. Your doctor will probably use a polymerase chain reaction test to see if there is HIV in your child's blood. The test is fairly accurate; most children with HIV can be diagnosed by 1 month of age, and almost all, by 6 months of age. If an infant still tests negative at 18 months, he or she is HIV negative.
All children are born with a much higher CD4 count than they will have as adults. CD4 cells are one ingredient in the body's immune system; HIV destroys CD4 cells, reducing the body's ability to fight off infection. Hence, a very sick HIV-positive infant may have what seems like a high CD4 count by adult standards. For this reason, age adjustment of the CD4 count is necessary.
Treating HIV In Children
Doctors usually recommend that a baby of an HIV-positive woman immediately be given a regimen of zidovudine for about six weeks. In addition, the child should be treated with medication for PCP at 4 to 6 weeks of age. This medication can be discontinued if HIV is definitively ruled out.
According to guidelines written by a panel of experts from the National Institutes of Health and other organizations in March 2005, all infants younger than 12 months should be considered for treatment with antiretroviral therapy as soon as they are diagnosed with HIV, regardless of their CD4 count, their viral load and whether they are symptomatic. Children older than 12 months should receive treatment if they have symptoms of the disease or if their laboratory results suggest that there is a decline in the function of their immune system. Some experts recommend treating asymptomatic children as well. However, there have been few studies of the effects of antiretroviral medications in children, and experts are still trying to establish the ideal dosage.
Children with HIV should be treated with a combination of drugs, such as one protease inhibitor (such as nelfinavir, lopinavir/ritonavir or indinavir) and two nucleoside analogue reverse transcriptase inhibitors (such as zidovudine and either dideoxyinosine or lamivudine). There are alternatives, and your doctor may suggest using efavirenz, a nonnucleoside reverse transcriptase inhibitor, in place of a protease inhibitor.
One problem for children with HIV is that they may be too young to swallow pills and thus cannot use all HAART medications. Some HAART medications are available in powders that can be mixed into food or drinks — they may not taste very good; researchers are working on improving their palatability. On top of HAART, your child may need to take medications to prevent the development of dangerous opportunistic infections, depending on his or her CD4 count, viral load and past history of infections.
As with adults, treatment of HIV and its accompanying opportunistic infections can result in serious side effects. Children are also at risk of drug interactions, just as adults are. To avoid them, be sure that your child's doctor knows all of the medications that he or she is taking.
HIV drug regimens are demanding; medications must be taken every day. Some medications should be taken with food, others on an empty stomach. Although it may be difficult or inconvenient to administer medication to your child so frequently — especially if he or she is suffering from side effects — it is crucial that you do so. Failure to adhere to drug regimens is one of the main reasons that treatment fails to work.
Survival rates are highly variable. They depend on when HIV was diagnosed, when it was treated and how faithfully the drug regimen was followed. Children born with HIV tend to fall into two categories. About 80 percent experience a slow progression of disease, often not showing symptoms for years. The other 20 percent experience a rapid progression, and many of these children die young, often by 4 years old.
Treating HIV In Adolescents
Deciding whether an adolescent should be treated medically as a child or an adult is difficult. The CDC recommends that adolescents in early puberty be treated as children and adolescents in the later stages of puberty be treated as adults. Because of the difficulty in treating growing children, the CDC recommends working with an expert on pediatric HIV infection.
Adolescents with HIV present different problems than do children with HIV. Although adolescents may be old enough to take medications on their own, they may be in denial or feel invincible — especially if they are without symptoms — and may be reluctant to take medication. As a parent, you must make an effort to provide stability and compassion for your HIV-positive teen-ager, and you must try to convince your teen of the importance of taking HIV medication faithfully.
Some teen-agers, having heard about the success of HAART, are under the mistaken impression that HIV has been cured. Reliable information about HIV is often available through schools. If possible, you might also encourage your child to learn about HIV through trustworthy Web sites, such as the National Institute of Allergies and Infectious Diseases site or the site about sexually transmitted diseases designed for teens and run by the American Social Health Association.
Living With An HIV-Positive Child Or Adolescent
Although public understanding of HIV has improved over the years, many people still have irrational fears about how the virus can be spread. Deciding when, and how, to tell other people about your child's illness is not easy. Whereas some people find teachers, nurses and the parents of other children open and supportive of children with HIV, others meet fear and intolerance. You have to decide what seems right, but seeking guidance from a doctor or counselor might be a good idea.
Many parents decide to tell their children's teachers simply because of the demanding schedule of medications. You probably cannot trust your kindergartner to take all of his or her medications at school, and at the right time, without help.
Having a child with HIV can be devastating, especially if you feel responsible. But you should remember that HIV is not a death sentence. Treatment is available, and it is often successful. The most important thing is to do what you can: Make sure that your child eats well, gets plenty of rest, sees the doctor regularly and, perhaps most important, always takes his or her medication.
