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Every parent wants his or her child to be healthy and safe. When your child is HIV+, there are some extra steps to take to make sure that he or she gets the right care. The good news is that HIV+ children, just like HIV+ adults, are living longer, healthier lives with improved treatments.
HIV is somewhat different in children than in adults. HIV+ children normally have much higher CD4 cell counts than adults, but may also have higher viral loads (the amount of HIV in the blood).
HIV+ children are challenged by the fact that HIV is attacking their developing immune systems. As a result, HIV+ children are more likely to get bacterial infections such as pneumonia or sinusitis (inflammation of the air spaces that open into the nose). Some HIV+ children experience a lung problem called lymphoid interstitial pneumonitis (LIP). LIP symptoms include fever, coughing, and shortness of breath.
Signs of HIV can also appear on the skin. Warts and molluscum contagiosum (small bumps on the skin), which are common in children and caused by certain viruses, can be more bothersome for HIV+ children.
HIV+ children may be small for their age and may not grow at the same rate as other children. A child may be undersized or underweight because of loss of appetite related to HIV or to some of the drug treatments. Thrush (white patches in the mouth due to yeast) is not uncommon in HIV+ kids and can make it difficult to eat. Since infections can start in the mouth, it is important that HIV+ children see a dentist regularly.
HIV+ children may have diarrhea, which can also make it difficult to gain weight. It is important that HIV+ children have proper nutrition. But getting kids to eat right can be hard, even when children are not HIV+! Ask your child's health care provider or an AIDS service organization for a referral to a dietician who knows about the nutritional needs of HIV+ people.
Recommendations have been made to prevent both HIV+ children and adults from getting opportunistic infections (OIs), diseases that attack the body when the immune system is weak. All HIV+ children up to the age of one are given medicine to prevent pneumocystis carinii pneumonia (PCP, also called pneumocystis jirovecii), a type of pneumonia that is more likely to affect people with poor immune systems. After the first year, some children should still be given preventative medicine depending on their immune systems.
If an HIV+ child tests positive for exposure to tuberculosis (TB) after a TB skin test, other medicine will be given to keep TB from developing. Depending on the child's age and immune system, medication might also be given to prevent mycobacterium avium complex (MAC), which is caused by a germ that can affect the lungs or the gut. In some cases, these kinds of preventative medications can be stopped as the immune system becomes stronger.
Vaccinating your child is one of the most important things you can do to keep him or her from getting sick. HIV+ children are immunized for most diseases the same way as children without HIV.
Check with your child's health care provider about any special requirements for vaccines for HIV+ children. For example, HIV+ children can and should get measles, mumps, and rubella (MMR) vaccine, and chicken pox (varicella) vaccine if their CD4 cells are high enough, but should not be vaccinated if their CD4 counts are very low.
Recognize that no parent can protect a child from every germ. While you may want to keep your HIV+ child from people who have colds and the flu, know that your child will eventually be around someone who is sick. Teach your child to practice frequent and thorough hand washing. Because children often rub their eyes or put their fingers in their mouths or noses, keeping hands reasonably free from germs can help keep your child well. As soon as possible, teach your child how to blow his or her nose.
Look for a pediatrician (children's doctor) who you feel comfortable talking to and who has experience treating HIV+ children. It is helpful to have a local pediatrician who is close by and can help with all of the regular childhood issues, and to consult a health care provider who is an HIV expert (especially if your local pediatricians do no have a lot of experience treating HIV+ kids). Expert HIV pediatricians will often work at a children's hospital or medical center with an HIV program.
HIV drug treatment works very well for children. The US Department of Health and Human Services has put together a set of pediatric treatment guidelines that recommend when children should start medications and which ones they should take. Starting early might keep HIV from causing more damage to your child's body.
Speak to your child's health care provider about starting HIV medications. Also ask about drug interactions and side effects. There is not as much information available about the use of HIV medications in children as in adults, and not all HIV drugs are available for children. Still, over ten HIV medications are approved for use by children. Finding the right dose is important. Children's doses are based on weight, so dosing will have to be adjusted frequently as your child grows.
Once HIV treatment is started, your child should be monitored regularly to make sure that the medications are working well and not causing any serious side effects. Work with your pediatrician to keep a close eye on your child's growth, development, and lab tests (such as viral load and CD4 counts). If you see problems, you may need to consider changing to different HIV drugs. Also ask your child if he or she is experiencing any pain. Staying aware of how your child is feeling will help you to know if he or she has become ill or is experiencing side effects.
Medicines cannot work if they are not taken correctly. If a child misses a dose, HIV can mutate, or change, to survive the medicine. When the medicine no longer works, it is called resistance and the child will likely have to change to another treatment (see TWP sheet on resistance).
The best way to avoid resistance is to take medicine just as it is prescribed. This is called "adherence" and means taking the right amount of medicine at the right time and in the right way (with food, or on an empty stomach), without missing or stopping. Children need to be adherent to their HIV drugs' dosing schedules.
When talking with your child's health care provider about which HIV drugs your child will take, think about your day and how you will fit in your child's drug dosing schedule. If you are also HIV+, think about how your child's dosing can fit with your own. However, your child may take different medications, on a different schedule.
Getting children to take medicine can be a real challenge. Children might not like how the medications taste or might have trouble swallowing pills. Many children do not understand why they should put up with medication side effects. Older children may hide pills or pretend to take them.
It may be especially difficult for kids to take their medicines in front of others. Taking pills in public or in a social situation may cause embarrassment or emotional distress. Going on vacation, trips, or to camp may make it more difficult for children to stick to their medicine schedule. Think about problem times and plan ahead.
Both your child and you may need extra help. Ask your pediatrician or other parents for suggestions about how to help your child take medication. Try using reminders, incentives, beepers, timers, color-coding regimens, and setting up weekly dosing packets to monitor adherence. If your child is having trouble taking a particular medicine, talk to your health care provider. It is possible that medicine can be switched to a different one or your child can be put on a different schedule.
Many parents are concerned about who they should tell about their child's HIV. It is your right to decide this for yourself. Your HIV+ child is not a danger to others. HIV cannot be spread through casual contact or saliva, tears, or sweat. Your child cannot infect someone by hugging, going to school, or sharing toys, utensils, food, and drinks.
It is important for parents to help their children take responsibility for protecting themselves and protecting each other. HIV can be transmitted through blood and certain bodily fluids (semen, vaginal fluids, and breast milk). Since there is a small chance that infected blood on a toothbrush or razor could infect someone else, it is best not to share these items. You can teach your child what to do if they cut themselves and how to dispose of their used bandages and other items.
Those who need to know about your child's status are the people involved in their care, such as nurses, physicians (including the pediatrician and dentist), and social workers. You will also need to decide when is the best time to tell your child about his or her HIV (see TWP sheet "Talking with Your Children about Your HIV Status or Your Children's Status"). It should certainly be before they become sexually active. It may be very helpful to get support from your health care providers or local AIDS service organization as you decide who to tell.
Any childhood illness can be hard for parents as well as for their kids. As a parent, you might find yourself wishing that you could be sick instead of your child. You may feel upset because the medication that you need to give your child causes him or her distress. You may feel helpless when there is not a good way to explain the situation to your child. Remember that these are normal experiences and feelings for any parent.
It is as important to take care of yourself as it is to take care of your HIV+ child. Here are some tips: