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Care and Treatment for HIV-Positive Children

October 2010

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The Challenge of Adherence for HIV+ Children

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.

HIV+ Children and Disclosure Issues

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.

Taking Care of Yourself

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:

  • Find information and resources at a local AIDS service organization.
  • If you feel alone, find other parents who can understand and provide support. If there are no other parents near by who have HIV+ children, find a group for parents of children with other on-going health care needs or look for an internet group.
  • If you are HIV+, take care of your own emotional and physical health. Many parents put their children's health first. You need to stay healthy to help your child.
  • If you have other children, find special time for them too.
  • While you want your child to be healthy and safe, try to avoid keeping him or her from enjoying normal childhood experiences.
  • Remember that it is okay to ask for help from family and friends. Being a parent is a full time job, only you do not get sick or vacation days. Take a break sometimes!
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This article was provided by The Well Project. Visit The Well Project's Web site to learn more about their resources and initiatives for women living with HIV. The Well Project shares its content with to ensure all people have access to the highest quality treatment information available. The Well Project receives no advertising revenue from or the advertisers on this site. No advertiser on this site has any editorial input into The Well Project's content.
See Also
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