Your Healthcare Team
The effects of HIV infection are not only physical, but also financial, social, and emotional for you and your family. You will need the support of a healthcare team including doctors, nurses, social workers, nutritionists, and child development specialists. Some communities have case managers. A case manager, usually a nurse or social worker, can help you find the services you need. Sometimes the case manager will work with your doctor in a clinic or hospital. Other times, the case manager will be in a community agency.
Choosing a Healthcare Provider
One of the important decisions you will make will be choosing a doctor and a program that will provide the best care for your child. Try to find a doctor who has taken care of other children with HIV or AIDS. Usually one of the following kinds of doctors will be responsible for coordinating your child's care:
- An immunologist (doctor specializing in diseases of the immune system)
- An infectious disease specialist
- A general pediatrician
The doctor you choose should be someone:
- You can trust
- You can talk to easily and who will take time to answer questions
- You can reach when your child is ill
You may need the services of many doctors and specialists, such as:
- Neurologists: specialists in illnesses of the brain and central nervous system
- Pulmonologists: specialists in illnesses of the lungs and breathing
- Cardiologists: specialists in illnesses of the heart
Once you have chosen a doctor and a treatment center, you can best help your child by keeping communication lines open between yourself and your healthcare team.
- Keep the team informed about your child's condition.
- Ask questions when you don't understand what is happening or why something is being done. Ask for explanations. Otherwise, people may assume that you understand.
- If you find that you forget questions when you go to the doctor or hospital, write your questions down and bring the list with you.
Remember: The course of the HIV/AIDS virus is unpredictable, and your child's condition may become worse despite treatment. If you feel that this is happening, share your concern with your doctor or someone you trust on the healthcare team. Although the infection cannot yet be cured, your healthcare team will do everything possible to keep your child well. You have the right to the best available medical care and treatment for your child.
Well Child Care
Like all children, your child needs to have a pediatrician, or family doctor, who will:
- See your child for checkups
- Watch your child's weight and growth
- Give immunizations (baby shots)
- Treat your child's colds, ear infections, and other illnesses
It is important for your pediatrician to know that your child has HIV infection so that he or she can give your child good care.
A child with HIV or AIDS is not able to fight infections well, so we want to keep the child from getting infections in the first place. These are some things you can do to help keep your child well. Older children need to be taught to do these things for themselves:
- Wash your hands often. Most infections are spread by germs on the hands. Washing hands often is the best way to keep from spreading germs. Children should also wash their hands before eating and after using the toilet.
- Use lotion or skin cream to keep dry skin from cracking and getting infected. Skin protects us from germs. Skin that is clean and without cuts and rashes keeps germs from infecting the body. Check your child's skin all over for rashes every day. For cuts and bites, clean the skin and look carefully for signs of infection.
- Check your child's mouth often. A child with HIV may get white patches in the mouth. Keep the inside of your child's mouth clean by giving water after milk. You can also wipe the inside of a baby's mouth gently with a soft, wet cloth.
- Brush your child's teeth or wipe the teeth of babies with a soft, wet cloth. Children who cannot fight infections can also get cavities in their teeth more easily. Try not to give your child a lot of sweets (candy, cakes, cookies, and chips). A daily vitamin with fluoride helps prevent cavities. Babies should not sleep with a bottle of milk or juice.
- Give your child nutritious food to help him or her stay well and grow. A regular balanced diet that includes protein (meat, eggs, and beans), dairy foods (milk, cheese, ice cream, and yogurt), green and yellow vegetables, fruits, and starches (cereal, rice, potatoes, noodles) is the best. Your child should take a multivitamin (liquid or pills) each day.
- Encourage your child to do all the things other children do. Children need play time and friends. Love and discipline are important parts of staying well.
- Learn your child's medicines. Know their names, purposes, doses, and possible side effects. Know how they are supposed to help, how much to give, how often to give it, and any problems to look for. Tell your HIV doctor what other medicines your child is taking because some medicines do not go well with HIV medicines.