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Parenting a child with HIV

a mother applying a compress to her sick daughters forehead

If your child has HIV/AIDS, you can take comfort in knowing that there is hope for your child's future. Eighty percent of infected children have a slow rate of disease progression (that means it takes a long time before the disease gets worse). With treatment, children with HIV survive for longer now. There are many adults alive today who were infected with HIV from their mothers at birth and have grown into adulthood. They have a good quality of life because of new HIV drugs, better care, and fewer opportunistic infections.

HIV drugs for kids

To learn more about what medications your child may be prescribed, visit the U.S. Food and Drug Administration's list of drugs approved for the treatment of HIV in children.

Drug therapy for kids with HIV

There is no cure for HIV/AIDS, but there are HIV medicines that slow down the disease. Ask your child's doctor about the best time to start HIV treatment. This will depend upon many things. Keep in mind that even if treatment is able to decrease the amount of HIV in your child's blood so that it is undetectable, your child still has HIV and still needs treatment.

Since no one drug can fight HIV alone, your child will take several drugs every day once treatment starts. He or she will have to take them exactly how your doctor tells you to. Your child can't miss doses or stop taking the drugs or they won't work. Ask your child's doctor about any side effects the drugs might cause, such as changes in body shape, muscle problems, or vomiting, so you will be ready to help your child.

If your child is in school, it's important that your child gets all of his HIV medicines. You and your child should decide what school staff to tell about his or her HIV status. The person giving the medicines should be told your child's HIV status, side effects of the drugs, and how to give the drugs. The school should keep your child's HIV status private unless you decide to tell other staff. You should talk with your doctor and the school staff to make a written plan that spells out the details of your child's treatment at school.

Keep your child's medicines on track

Below are some tips for keeping your child on schedule with his medicines and helping your child take the medicines.

  • Give your child the medicines as directed by the doctor. Make sure he or she takes the medicine. As your child gets older, let him or her take more responsibility.
  • Follow any food guidelines that are necessary for taking the HIV medicines.
  • Use a special medicine measurer that may encourage your child to take the medicines, such as one with animals or other pictures on it.
  • Try giving your child a piece of candy if the medicine tastes bad.
  • Think about why you might have trouble sticking to the medicine schedule. For example, if a drug needs to be taken after a meal, it might mess up a special playtime or routine you have with your child. Talk to your doctor about these barriers and making the treatment plan fit you and your child's lifestyle.
  • Consider asking your doctor and your child's doctor for matching medicine schedules. It may help you both stick to your medication schedules if you and your child can take medicine at the same time.
  • Plan your meals. Some drugs have to be taken with food. Plan when your child will eat so the right drugs can be taken with the right amount and type of food.
  • Write down information about the medicines. This includes the drug name, when to take it, how much to take, and if your child takes it with food or on an empty stomach. Use this planner to organize your child's medicines.
  • Don't leave your doctor's office until you understand how your child takes the drugs.
  • Organize the medicines. Use daily or weekly pill boxes.
  • Don't forget! Use timers, alarm clocks, or pagers to remind you to give your child his or her medicines. You could even write it in your planner.
  • Plan ahead. Weekends and holidays make it harder to remember to stick to the medicine schedule. Figure out a plan ahead of time so you won't forget. If you're traveling, keep medicines with you, just in case your checked luggage is lost.
  • Get refills on time. Don't miss a dose!
  • Write down the problems your child has with the drugs. It will help you remember and track the problems.
  • Tell your doctor right away if your child has side effects or other problems. Work with your doctor to make the treatment plan right for your child. You might be able to change it to make it better.
  • Find ways to help your kids take charge. Depending on their age or interests, your kids might take over their HIV care through the use of a game or cellphone application. Examples of smartphone apps include an HIV glossary from AIDSInfo; texting reminders from Med Action Plan, Truvada, and others (see blog.aids.gov for more info); and even state health departments. You need to prepare your child to take responsibility for and care for his or her HIV.
  • Keep up-to-date with assistance programs and insurance. If you switch jobs or insurance providers, make sure you have continuous coverage. Learn more about COBRA for keeping group health benefits after you leave your job. Also, keep up-to-date with your enrollment in HIV drug assistance programs. If you let these benefits expire, you could end up paying out-of-pocket for expensive HIV drugs. If you need health insurance, learn more about getting insurance. Check your state's rules for the AIDS Drug Assistance Program (PDF, 93 KB) requirements.

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Infections in children with HIV

Children with HIV can get infections, just like adults. Children with HIV are more likely to get some infections that children without HIV might not get. Common infections in children with HIV are listed below.

  • Bacterial infections that are common include pneumonia, ear infections, meningitis, staph (skin infection), salmonella (which causes severe diarrhea), and urinary tract infections.
  • Candidiasis (kan-dih-DEYE-uh-suhss) is a yeast infection that can cause diaper rash and infections in the mouth and throat that make eating painful. It can cause swelling and a thick white coating on the mouth, tongue, throat, and esophagus.
  • Cryptosporidiosis (krip-toh-spar-ihd-ee-OH-suhss), or crypto, happens when you put something in your mouth that has been in contact with the feces of a person or animal that has crypto. While some people have no symptoms, it can cause diarrhea, stomach cramps, nausea, fatigue, weight loss, appetite loss, vomiting, dehydration, and fever. Crytpo can also be found in some public water supplies.
  • Cytomegalovirus (seye-tuh-meg-uh-loh-VEYE-ruhss), or CMV, can cause lung problems, slow weight gain, swollen glands, rash, blood problems, infections, and blindness.
  • HIV encephalopathy (in-sef-uh-LOP-uh-thee) is infection in the brain. The brain swells and can cause seizures, developmental delay, and dementia.
  • HIV wasting syndrome is the inability to keep weight on the body because of infections and loss of appetite from HIV.
  • Lymphoid interstitial pneumonitis (int-ur-STISH-uhl noo-muh-NYT-uhss), or LIP, affects the lungs and causes coughing, wheezing, shortness of breath, and tightness in the chest. It makes breathing harder. Often, the child is put in the hospital.
  • Mycobacterium avium (meye-koh-bak-TUR-ee-uhm AY-vee-uhm) complex, or MAC, usually infects people through their lungs or intestines. It spreads quickly through the body. Widespread MAC disease causes fever, night sweats, weight loss, stomach pain, tiredness, and diarrhea. MAC germs can be found in most sources of drinking water, like treated water systems, in dirt, and in household dust. MAC disease does not seem to be spread from one person to another.
  • Pneumocystis jiroveci (noo-muh-SISS-tuhss yee-row-VET-zee) pneumonia (formerly called pneumocystis carinii pneumonia), or PCP, is the leading cause of death in children who have AIDS. It attacks the lungs. Symptoms are a cough or trouble breathing. Most scientists believe PCP is spread in the air, but they don't know if it lives in the soil or someplace else. Take your child to your doctor right away if she or he has these symptoms.

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Helping a child with HIV cope

Having HIV affects your child's physical and emotional health. Coping with HIV can be hard for children with HIV, because of some or all of these things:

  • Doctors can be scary for kids
  • Feeling lonely while away from family, if hospitalized
  • Having a parent or parents who died because of AIDS
  • Social stigma
  • Side effects from medicines (like being too tired to play with other kids)
  • Fear of disability and death
  • Feelings of anger, anxiety, or sadness

It's hard to predict how your child will cope with having HIV. Talking with your doctor, other parents with HIV-positive children, and school staff can help you and your child. There is support available to help you get through those challenges. You can learn more about parenting a child with an illness or disability, like HIV, in the Parents and Caregivers section of girlshealth.gov.

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Being a mother with HIV/AIDS

Motherhood is a wonderful experience. However, if you are a mother living with HIV/AIDS, you know that having a child brings many more worries to your life than what other mothers might have. Besides the normal increase in responsibilities and demands on you as a parent, you will have to struggle with:

  • Telling your child about HIV — if you should and how to do it
  • Whether your child will be rejected if people find out about your HIV
  • Discrimination from your child's school
  • Disciplining your child when you are tired or sick from HIV-related illness or medication
  • Parenting your child in spite of feeling drained from HIV/AIDS
  • Complications or drug side effects
  • Giving your child a happy and secure life
  • Planning for the care of your child in the future if necessary

Having HIV/AIDS no longer means having a short life. Women with HIV/AIDS are living longer and raising families. Still, all parents, including parents who are HIV-positive, need to think about and make plans for their children's future care and custody. Doing so at the early stages of illness, when you are feeling your best, is a good idea. Deciding who will be the guardian, or the person who will take care of your kids if you're too sick or if you pass away, is not easy. There are several different types of guardians. You may appoint someone to be guardian of your children while you're alive or after you die. These are both separate from adoption.

States have different laws on how to select a guardian. Talk to a lawyer for more information about the laws in your state. You can also contact Housing Works, an organization that helps people with HIV/AIDS find housing and deal with legal issues.

A strong support network can help you to cope with the challenges of mothering with HIV. Talking with other mothers who are HIV-positive can give you the confidence you need to be a good mother to your own children.

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Content last updated: July 01, 2011.

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