HIV/AIDS and Parenting

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• Having a Child with HIV/AIDS
  • Drug Therapy
  • Keep Your Child's Medicines on Track
  • Infections
  • Coping Issues
• Mothers with HIV/AIDS
  • Planning for Your Child's Future
• Additional Information on Having a Child with HIV/AIDS
• Additional Information on Mothers with HIV/AIDS

Having a Child with HIV/AIDS

If you are a parent of a child with HIV/AIDS, you can take comfort knowing that there is hope for your child's future. Eighty percent of infected children have a slow rate of disease progression, many not developing the most serious symptoms of AIDS until school entry or even adolescence. Children with HIV survive for longer now because of HIV drugs, good care, and early treatment of illnesses and opportunistic infections.

Drug Therapy

There is no cure for HIV/AIDS, but there are HIV medicines (also called antiretrovirals) that slow down the disease. The goal of treatment is to decrease the amount of HIV in the blood and keep it low, even undetectable. Even when the virus is undetectable, your child still has HIV. There are 19 antiretroviral medicines approved for children with HIV.

Since taking only one kind of drug can't fight HIV by itself, your child may have to take several drugs every day. 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. There will probably be side effects from the drugs that you need to be ready to deal with. Some of the side effects can include changes in body shape, muscle problems, inflamed pancreas, insulin resistance, and build-up of lactic acid (can cause throwing up, stomach pain, and breathing problems).

If your child is in school, it's important that your child gets all of his/her HIV medicines. You and your child (if appropriate) should decide what school staff to tell about his/her HIV status. The person giving the medicines should be told your child's HIV status, side effects of the drugs, and special requirements (like drugs that have to be taken with food). The school should keep your child's HIV status confidential unless you decide to tell other staff.

Keep Your Child's Medicines on Track

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

• Give your child the medicines. Make sure he or she takes the medicine. As your child gets older, involve him or her in taking more responsibility for taking the medicines.

• Use a special medicine measure with animals or other pictures on it.

• Give your child a lifesaver or licorice 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.

• 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 (or even egg cartons).

• 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.

Infections

Children with HIV can get infections, just like adults. Because a child's immune system is quickly impaired by HIV, children are more likely to get certain infections that children without HIV might not get. Common infections in children with HIV are listed below.

• Bacterial infections like pneumonia, otitis media (ear infections), meningitis (fever, vomiting, stiffness, and irritability), staph (skin infection), salmonella (causes diarrhea), and urinary tract infections.

• Candidiasis is a yeast infection that can cause diaper rash and infections in the mouth and throat that make eating difficult. It can cause swelling and a thick white coating on the mouth, tongue, throat, and esophagus.

• Crypto (cryptosporidiosis) happens when you put something in your mouth that has been in contact with the bowel movement (BM) or poop 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.

• CMV (cytomegalovirus disease) can cause lung problems, slow weight gain, swollen glands, rash, blood problems, infections, and blindness.

• HIV encephalopathy (HIV [en-sef-a-lop-e-the]) 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 because of infections and loss of appetite from HIV.

• LIP (lymphoid interstitial pneumonitis) affects the lungs and causes coughing, wheezing, shortness of breath, and tightness in the chest. It makes breathing progressively more difficult and often, the child is put into the hospital.

• MAC (mycobacterium avium [my-co-bak-teer-ee-um a-vee-um] complex) 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.

• PCP (pneumocystis carinii [new-mo-sis-tis ca-rin-nee-e] pneumonia) is the leading cause of death in HIV positive children. It attacks the lungs. Symptoms are 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.

Coping Issues

Having HIV does not only affect your child physically, but can also be difficult for your child to cope with. Children with HIV face a variety of challenges:

• intimidation by doctors
• loneliness while away from family if hospitalized
• orphaned by parents who had 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.

Mothers with HIV/AIDS

Motherhood is a wonderful experience. Children can be the most precious things in our lives. Although they need so much from us, they give us much more in return — hope and a sense of humor are just a few! 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 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
• if your child will be rejected if people find out about your HIV
• discrimination from your child's school
• disciplining your children
• 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

Planning for Your Child's Future

Having HIV/AIDS no longer means a short life. Women with HIV/AIDS are living longer and raising families. But, as with many other diseases, no one knows exactly how long you will live. So it's important to think about your children's future care and custody in the early stages of the illness. 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.

• Inter vivos guardian. You give complete responsibility to someone else while you're alive. It goes into effect right away.

• Standby guardian. This guardian is selected and is on stand-by until you want this person to be the guardian. You still have custody, so you won't give up your rights as a parent. So if you need it, the stand-by guardian can help you while you're alive.

• Testamentary guardian. You put the guardian's name in your will. The guardian will only be able to have authority over your children after you die. The guardian must petition the Family Court to get appointed.

• Standby adoption. You appoint a person to adopt your child at a specific time. The adoption doesn't happen right away, and the parent can advocate for the best interests of the child while alive.

• Traditional adoption. You give up your parental rights and custody of your child.

States have different laws on how to select a guardian. Talk to a lawyer for more information about the laws in your state.

Additional Information on Having a Child with HIV/AIDS:

Publications

1.   Caring for Someone with AIDS at Home - This publication provides information on HIV/AIDS, what it is, pointers on taking care of AIDS patients, referral sources, providing support, and guarding against infections.

   http://www.cdc.gov/hiv/resources/brochures/careathome/index.htm

2.   HIV Infection in Infants and Children - This publication contains information on the scope of the problem of HIV in children, transmission, prenatal HIV transmission, and diagnosis. Additional information is provided regarding the progression of the disease, signs and symptoms of pediatric HIV disease, treatment of HIV infected children, AIDS in adolescents, and AIDS-related psychosocial issues.

   http://www.niaid.nih.gov/factsheets/hivchildren.htm

3.   Insure Kids Now! - Insure Kids Now! is a national campaign that links the nation's 10 million uninsured children, from birth to age 18, to free and low-cost health insurance.

   http://www.insurekidsnow.gov/

4. Children and HIV (Copyright © AIDS InfoNet) - This article discusses how HIV affects children differently than adults.

   www.aidsinfonet.org/fact_sheets/view/612

5. Children and HIV (Copyright © NYU School of Medicine) - This publication discusses the problems of HIV in children. It explains how children and teens can get HIV, what "HIV Positive" means, and what HIV and AIDS are. It provides information on treating HIV in younger patients, information about clinical trials, and other details parents of HIV positive children should know.

   http://www.hivinfosource.org/hivis/hivbasics/children/index.html

6. HIV & AIDS (Copyright © Kidshealth) - This guide for parents explains what HIV and AIDS are, the causes, signs and symptoms of infection, diagnosis, and contagiousness. Additional information is provided regarding opportunistic infections and other complications, treatment, long-term care of children with HIV/AIDS, prevention, and talking with your child about HIV and AIDS.

   http://kidshealth.org/parent/infections/std/hiv.html

7. Taking Medications to Treat HIV/AIDS: A Treatment Adherence Guide for Parents of Children with HIV Infection (Copyright © EGPAF) - This fact sheet explains why "adherence to treatment" is so vital for HIV patients, lists drug side effects that can effect children and advice for what to do about them, how to stay on a schedule, and other tips to make treatment of children with HIV successful.

   http://www.pedaids.org/News/Publications/Other/Taking%20Medications%20to%20Treat%...

8. Women, Children, and HIV (Copyright © UCSF, UMDNJ) - The goals of this web site are to: disseminate state-of-the-art clinical information and training resources on mother-to-child transmission of HIV (MTCT) and related topics; communicate the best practices in preventing mother-to-child transmission of HIV (PMTCT) and caring for infected children; disseminate PMTCT program resource materials; disseminate state-of-the-art clinical information and training resources on perinatally acquired pediatric HIV infection; and implement services responsive to the needs of the CDC Global AIDS Program (CDC/GAP).

   http://www.womenchildrenhiv.org/

Organizations

1.   AIDSInfo
2.   National Institute of Child Health and Human Development, NIH, HHS
3. AIDS InfoNet
4. Center For AIDS Research at NYU School of Medicine
5. Elizabeth Glaser Pediatric AIDS Foundation
6. Family Ties Project
7. UCSF Center for HIV Information (CHI)

= Indicates Federal Resources

Additional Information on Mothers with HIV/AIDS:

Publications

1.   Breastfeeding and HIV/AIDS Frequently Asked Questions (Copyright © Linkages Project) - This fact sheet for health care professional and mother with HIV discusses the current studies and their results about HIV transmission through breastfeeding. It describes when a mother should be advised not to breastfeed.

   http://www.linkagesproject.org/media/publications/frequently%20asked%20questions/...

2.   Facing the Future: An Introduction to Life Planning for Parents and Caregivers (Copyright © 2002 Family Ties Project) - This publication gives information on making decisions about medical care, finances, and your child's future if you or your child has HIV.

   http://www.familytiesproject.org/Documents/6.02.FacingtheFuture.pdf

3.   HIV Transmission through Breastfeeding: A Review of Available Evidence (Copyright © WHO) - This report discusses the pros and cons of an HIV positive mother breastfeeding, discusses the available research on the topic, describes how transmission occurs and how to prevent it, and concludes with information about further research that still needs to be done on the issue.

   http://www.who.int/reproductive-health/docs/hiv_infantfeeding/breastfeeding.pdf

4. Infant Feeding and HIV (Copyright © UNICEF) - UNICEF provides an easy-to-read publication on the risks and benefits to breastfeeding for mothers with HIV. It provides advice on getting tested and provides various examples of infant nutrition to ensure you are making the right choice in this difficult decision.

   http://www.unicef.org/nutrition/23964_infantfeeding.html

5. Infant Formula (Copyright © AAFP) - If you are unable to breastfeed, this publication gives information on choosing and preparing infant formula. It provides information on bottle warming and also explains the different types of formula that you can purchase and how to prepare it.

   http://familydoctor.org/178.xml

6. Prevention of Parent-to-Child Transmission of HIV/AIDS (Copyright © UNICEF) - This publication provides statistics on the frequency of mother-to-child transmission of HIV and the clear difference of transmission rates between a parent taking preventative steps and one who neglects prevention.

   http://www.unicef.org/aids/index_preventionMTCT.html

7. Standby Guardianship (Copyright © Family Ties Project) - This web site provides detailed information on The Standby Guardianship Act of 2002 in the District of Columbia and information and resources on similar legislation in the other states.

   http://www.standbyguardianship.org

8.   Standby Guardianship (Copyright © NAIARC) - This fact sheet gives the legal definition of standby guardianship, its history, and lists the reasons parents have used standby guardianship. It also explains how standby guardianship works and how to overcome obstacles for putting an arrangement in place.

   http://aia.berkeley.edu/media/pdf/2005_standby_guardianship_fact_sheet.pdf

9. Women, Children, and HIV (Copyright © UCSF, UMDNJ) - The goals of this web site are to: disseminate state-of-the-art clinical information and training resources on mother-to-child transmission of HIV (MTCT) and related topics; communicate the best practices in preventing mother-to-child transmission of HIV (PMTCT) and caring for infected children; disseminate PMTCT program resource materials; disseminate state-of-the-art clinical information and training resources on perinatally acquired pediatric HIV infection; and implement services responsive to the needs of the CDC Global AIDS Program (CDC/GAP).

   http://www.womenchildrenhiv.org/

Organizations

1.   AIDSInfo
2.   CDC-INFO
3. AIDS InfoNet
4. Family Ties Project
5. National Abandoned Infants Assistance Resource Center

= Indicates Federal Resources

Content last updated January 25, 2008.