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HIV AND YOUR CHILD |
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Facts about HIV in babies and children:
- HIV can be passed to a baby during pregnancy or delivery.
- An HIV-infected woman's chances of having a baby with HIV are one in four ( 25%)
for each pregnancy.
- HIV can be passed to a baby through breast milk from an HIV-infected mother.
- Like adults, children and adolescents can get HIV from contact with blood or body
fluids or through sex.
- Bathing, kissing, feeding, and playing with your child are NOT
risky and do not cause the spread of HIV.
- In the past, some babies and children became infected through blood transfusions.
Today the blood from all donors is screened for the virus, and HIV infection from
this source is unlikely.
- Special blood tests can show whether your infant is infected with HIV.
- Your child needs to see a health care provider who has experience treating HIV-infected
babies and children.
- Early immunizations can help protect your child from other HIV-related diseases.
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How will I know if my baby has HIV?
- Before a baby is born, it shares its mother's blood supply. If you are infected
with HIV, you can transmit HIV to your child through your blood before birth. The
baby also can become infected during delivery.
- For the first few months, your baby may test positive for HIV infection because
it still has some parts of your blood, so early tests are not accurate. After several
months, the child's own system takes over. Test results then become accurate for
your child and can indicate HIV infection.
- When your child is less than 2 years old, his or her blood should be tested every
2-3 months until the system matures. After age 2, a single blood test can show if
your child is infected with HIV.
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What will happen to my baby?
- Some babies who have HIV infection my become ill in the first year of life. Others
remain healthy for many years.
- Regular medical checkups and blood tests will help your doctor keep track of how
your child is doing and decide whether special medicines are needed. Ask your health
care provider how you can help protect your child.
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How can I help my child stay healthy?
- It is very important to seek medical care as soon as you know that your child has
HIV. Although there is no cure as yet for HIV, there are things you can do to help
your child stay as healthy as possible.
- Because your child has HIV infection, you will want to learn as much as your can
about the virus. You can prevent many illnesses by:
- Keeping your home safe and clean.
- Observing and listening to your child
- Telling your health care provider right away about unusual behavior or symptoms.
- Working with the doctor, nurse, or other health care provider to plan your child's
care.
- Making sure your child gets all recommended baby shots and booster shots.
- Try to keep a positive outlook. Hope is very important. Every day, there are new
drugs and treatments for HIV that may help your child. Each time you take your child
for health care, be sure to ask about new treatments or clinical trials that might
be right for your child.
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Signs and symptoms of HIV infection in babies:
- Swelling in the lymph glands in the neck, under the arms, and in the diaper area.
- Swollen belly, sometimes with diarrhea (frequent loose, watery, bowel movements).
- Itch skin rashes.
- Frequent lung infections (pneumonia).
- Frequent ear and sinus infections.
- Problems with gaining weight or growth.
- Inability to do the kinds of things healthy babies do (such as sitting alone, crawling,
walking)
- Crankiness, irritability, and constant crying.
- Most important, talk with your health care provider right away about anything you
notice that seems unusual for your baby.
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Telling others about your child's HIV infection:
- When you learn about your child's HIV infection, you may have mixed feelings, including
fear, anger, sadness, or guilt. Telling people that your child has the virus may
be hard. You will need to think about many things when deciding whom to tell about
your child's HIV infection.
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Talking about your child's HIV infection:
- Possible Benefits:
- More support from family and friends
- In some states, better health and welfare benefits
- More acceptance of the child's infection
- Possible Risks:
- Rejection by family, friends, or day care, school, or social programs.
- Changes in health benefits
- Although it is risky, sharing information about your child's HIV infection can be
helpful in a number of ways. Telling others may help you seek the medical care your
child needs and apply for other kinds of help. You can begin actively planning for
your child's care and your family's future.
- Your doctor, nurse, social worker, or other members of the health care team can
help you plan how and when to share information about your child's HIV infection.
They can help you tell others. Your list of people to tell may include:
- Your child, if he or she is old enough to understand
- Family members
- Day care workers or babysitters.
- Teachers, classmates, and other people at school.
- Health professionals who work with your child or your family, including your family
doctor and dentist, nurses, social workers, nutrition counselors, and pharmacists.
- Your doctor may be required by law to report your child's HIV infection to the state
or local health department. Ask about the laws, confidentiality, and anonymous HIV
testing in your state.
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Talking with your child about HIV infection:
Consider your child's age. Talk with your child about HIV when he or she seems ready,
possibly around age 5. How you talk with an older child about HIV infection depends
on whether the child has had HIV since infancy or is newly diagnosed.
- Young Children:
- Children born with the virus have learned a lot about living with HIV infection
by the time they reach the age when they can understand what it means to have HIV.
Your child will have had regular visits to doctors and other health care providers
and will have experienced blood drawings and shots. Taking medicines may be routine.
Perhaps your child knows or can say the name of the infection, too.
- Young children are usually content with knowing only a little bit about HIV. You
can give short, simple answers to most of the questions your young child asks.
- School-age children:
- Older children can understand much more. It is very important to give your child
correct information and honest answers about your feelings. Otherwise the child
may get the wrong information from someone else.
- A child who has HIV infection that is kept secret may suffer silently because of
shame or fear. An older child who is having trouble coping with HIV infection may:
- Have problems sleeping.
- Pull away from friends and family.
- Be depressed or sad.
- Have problems at school.
- Even a young child may have many of the same problems as an adult when dealing with
HIV infection. Counselors and health care providers who work with children who have
HIV can help you recognize changes in your child's behavior. They can help the child,
and you, find ways to talk about these problems.
- Older Children:
- The older child - from 12 to 21 years of age - who has recently become infected
with HIV may feel and express many of the same emotions as an adult in the same
situation: disbelief, fear, sadness, depression, shame. At the same time, the child
may behave in some of the same ways as a younger child.
- Learning as much as possible about HIV and AIDS will help you talk with your child.
For example, your child may ask (or might like to ask):
- Am I going to get sick? When?
- What will happen to me?
- Will I have to go to the hospital or see the doctor more often?
- How will HIV affect my family, friends, and people at school?
- How can I prevent giving HIV to others?
- It is important to talk with older children who have HIV about using condoms for
safe sex, as well as the dangers of needle-sharing. It may be very hard to stay
calm and neutral when talking with your older child about HIV infection. You may
want to arrange for your child to meet privately with an HIV/AIDS health counselor
who knows how to interact with teenagers. Ask your child's health care provider
to help you find a counselor who can meet with your child.
- Talking with your older child in an open and friendly way will do much to ease fears
about rejection by other family members and friends. You may decide together whom
to tell about the HIV infection and when.
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How can we get the support our family needs?
- A person or family with HIV may need many kinds of support. Your child's health
care provider and your local health and social services departments can assist you
in finding the help you need. Help may include someone to:
- Answer your questions about HIV and AIDS.
- Help you find health care providers and make health care decisions.
- Provide transportation to and from health care appointments.
- Assist in planning ways to meet financial and daily needs.
- Arrange home nursing care or rehabilitation services.
- Refer you and your loved ones to support groups.
- Represent your family in legal matters.
- Sometimes it helps to talk with others who also have HIV or a child with HIV. Here
are some ways of finding them:
- Read HIV newsletters.
- Join a support group for friends and family.
- Volunteer to help others.
- Attend social events to meet other families living with HIV.
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Additional Resources:
- There are many ways to get information about living with HIV. You may find it helpful
to read about HIV and learn how others have cared for themselves or their family
members.
- You can get information from your local health department about HIV, including where
to get tested for the virus and the kinds of services available to your child and
your family.
- Your local or state medical society can help you find a doctor.
- Your library may have information that you can share with your child. Ask your librarian
if there is a special directory that lists groups for families whose children have
HIV.
- Some hospitals and churches offer programs and sponsor support groups.
- National hotlines and information clearinghouses can send you free publications
and give you the latest news about drug-testing and clinical trials. Here are some
telephone numbers to help you get the information you need:
| INSTITUTE
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PHONE NUMBER
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National AIDS Hotline |
English - (800) 342-AIDS (2437)
Spanish - (800) 344-SIDA (7432) |
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TDD Service for the Deaf |
(800) 243-7889 |
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National AIDS Clearinghouse |
(800) 458-5231 |
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National Pediatric HIV Resource Center |
(800) 362-0071 |
HIV/AIDS Treatment Information
American Foundation for AIDS Research |
(800) 39AMFAR (392-6327) |
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AIDS Treatment Data Network |
(212) 268-4196 |
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Project Inform |
(800) 822-7422 |
AIDS Clinical Trials Information Service
(Clinical Trials Conducted by the National Institutes of
Health or Food and Drug Administration- Approved Trials) |
(800) TRIALS-A (847-2572) |
- Social Security Disability Benefits
- For confidential assistance in applying for social security disability benefits,
call the Social Security Administration at (800) 772-1213. You may request a personal
earnings and benefit estimate statement (PEBES) to help you estimate the retirement,
disability, and survivor benefits payable on your social security record.
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Prevent Illness:
- Immunize Against Infection
- With HIV infection, your child is more likely to get common childhood illnesses,
and these may be more serious. You can protect your child by making sure all the
baby shots are given on time. These shots include:
- Diphtheria, pertussis (whooping cough), and tetanus (DPT)
- Polio (IPV)
- Mumps, measles, rubella (MMR)
- Your health care provider may recommend other immunizations, depending on the results
of medical tests. These include:
- Haemophilus influenzae type B (HIb)
- Hepatitis B (HepB)
- Pneumococcal infection (after 2 years of age)
- Influenza (yearly)
- Avoid common illnesses:
- Some infections cannot be prevented by shots. Infections from the bacteria and viruses
that cause sores, colds, and influenza (flu) can weaken your child and make it harder
to resist more serious HIV-related diseases. Keep your child away from people who
are sick, and tell the doctor or nurse if your think your child has been near someone
with tuberculosis (TB) or other infections.
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Provide a Healthy Home Life:
- As the parent or guardian of a child who has HIV infection, you will want to take
special care of yourself so that you can care for your child. The advice that follows
can help both you and your child stay as healthy as possible.
- Teach personal Care. Wash your hands often, and teach your child to do the same
as soon as he or she is able. Keep your child away from human or animal waste.
- Brush the child's teeth until he or she is able. Your child will need to visit the
dentist twice a year. Ask the dentist to help you teach your child proper mouth
care. The first sign of your child's HIV infection may be sores in the mouth. At
each visit, the doctor or nurse will examine your child's mouth.
- Eat healthy foods. Your child needs healthy foods in order to grow and to help fight
infections. A proper diet will also help you and your child have strength and energy.
Your child's health care provider can help you decide which foods are best. Ask
how to help a "picky eater" learn to enjoy healthy foods.
- Get regular exercise. Most children with HIV infection are active; however, some
need encouragement to get physical exercise (in fresh air and sunshine if possible).
Regular exercise is important to help you and your child keep up your strength.
- Get plenty of sleep. HIV-infected children need rest. Sleep will renew your child's
energy for the next day, especially for going to day care or school, where there
may be little time for rest during the day.
- Play with, talk to, and hug your child often. Spending time together will help you
spot problems that should be reported to your child's health care provider.
- Give medication correctly and on time. Your child needs medicines to slow the HIV
infection and prevent other infections, such as pneumonia, that can occur when the
immune system is weak.
- Your doctor or nurse will tell you exactly what medicine your child should have.
Giving your child the right amount of medicine, and giving it on time, can mean
the difference between staying healthy and becoming severely ill.
- Do not allow your child to take any other medicines, alcohol, or illegal (street)
drugs.
- Refer to our helpful hints section for giving medicine to a young child. Your child's
health care provider can show you how to hold the baby and use medicine droppers
or syringes correctly.
- Help your child lead a normal life. Playing with other children in your home and
in the neighborhood is good for your child. It is not dangerous for your child or
for the other children. HIV infection is not spread by touching or being in close
contact with a friend.
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Report symptoms promptly:
- Watch your child carefully. Report any of the following to your health care provider
right away:
- Fever
- Cough
- Fast or difficult breathing.
- Loss of appetite and poor weight gain.
- White patches or sores in the mouth.
- Diaper rash that won't go away.
- Blood in the diaper or bowel movements.
- Diarrhea (frequent loose, watery, bowel movements).
- Vomiting.
- Contact with a person who has chicken pox, measles, TB, or other diseases that can
spread.
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Be Sure your child gets Medical treatment:
- Your child may stay strong and healthy for a long time, but to be sure, regular
blood tests will be needed to show how well the immune system is working.
- Special T cells, called CD4 cells, in the blood help the body defend itself from
attackers, such as viruses. But CD4 cells can be destroyed as your child's HIV infection
worsens, leaving your child unable to fight off other infections and illnesses.
- Your child's health care provider will do a CD4 cell count every few months. This
test shows the number of CD4 cells in your child's blood and lets the doctor know
when special medicine is needed.
- The doctor will probably prescribe medicine, such as AZT (not called ZDV, for zidovudine),
didanosine (ddI), or dideoxycytidine (ddC) to help slow your child's HIV infection.
- Another drug, trimethoprim-sulfamethoxazole or TMP-SMX ( Bactrim, Septra and generic
products), may be given to prevent Pneumocystis carinii pneumonia (PCP). PCP is
the most common serious pneumonia in children with HIV. Your child may need other
medicines to prevent "opportunistic" infections that can take advantage of a weakened
immune system.
- These treatments are strong and can cause problems. Watch for and report side effects
such as problems sleeping, headaches, vomiting, muscle or belly pain, numbness in
hands or feet, or hyperactivity.
- Your health care provider will take blood tests regularly to see how well your child
can resist infections. Be sure to ask your doctor about other tests and treatments
your child may need, including:
- New HIV drugs or vaccines. new medications are tested on people to see if they are
safe or helpful. This is called a clinical trial. Usually, new HIV medicines must
be tested in a clinical trial before a doctor can give them to patients who are
not part of the clinical trial.
- Special x-rays and other tests for growth, development, and nervous system function.
- Special feedings or formulas.
- Physical, occupational, or speech therapy.
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