N.C. Sickle Cell Syndrome Program: Parents and Caregivers

There are many things you can do to help your child manage his disease. While you can't get rid of the disease, you can help your child get sick less often and feel better. You can also help your child best learn how to live with the disease by:

Dealing with your feelings

Any parent who passes a genetic trait or chronic illness on to a child may feel a lot of different feelings. No matter how you feel, it is okay because there are no right or wrong feelings. What is most important is to how you deal with your feelings.

• Become aware of how you feel.
• Express your feelings by talking with your partner, a close friend, clergy, or your child’s doctor
• Learn more about the disease to help reduce your fears.

Get the best medical care

• Find a doctor for your child who is experienced in sickle cell disease. Take your child for well child exams as often as the doctor recommends.
• Make sure your child gets all of her baby shots (immunizations) on time.
• Help the doctor give your child the best care. Answer his or her questions fully and ask any questions you have about what to do for your child.
• Learn as much as you can about the disease. The more you know, the better care you will be able to give your child.
  

Take good care of your child at home

• Give your child penicillin daily until your doctor tells you to stop.
• Give your child lots of fluids to drink when she is sick, in pain, very active or taking a trip and when it's hot outside. The rest of the time just make sure your child gets fluids to drink whenever he is thirsty.
• Call the doctor right away if your child has a fever of 101 degrees Fahrenheit or higher. Check your child's temperature when you think she might be sick.
• Help your child handle any pain he has from the disease. Try more fluids, quiet play, warm baths, heating pads or warm towels, massages or Tylenol. If these home remedies don't ease the pain, then call the doctor.

Get help for your child when it's needed

Children with sickle cell disease will probably have times when they do not feel well. You are an important part of your child’s health care team. You will need to know when to get your child help and when you can help her feel better at home.

• Learn how to correctly take a temperature and read a thermometer.
• Keep supplies on hand to help you care for your child (e.g. oral or digital thermometer, pill crusher, medicine dispenser, etc).
• You know your child better than anyone else. If you think something might be wrong, call your doctor or nurse. They will help you decide what to do.

Take care of yourself and your family

• Having a child with sickle cell disease is not easy. The disease affects the entire family. Help those who are close to your child learn about the disease.
• Get support from family and friends. Let them know how they can help you. You might need someone to listen to you or someone to watch your other children. Think about what you need and ask for it.
• Other parents who have children with sickle cell disease can give you a special kind of support. Find out if there is a parent support group near you and join.
• If things get to be too much for you, get help. Talk to your doctor, nurse, clergy or a social worker. You are not alone. Make sure that you get what you need to give your child the best care.

How Can I Help My Child With Sickle Cell Disease?

Most children with sickle cell disease can look forward to a full life. It is important that they be prepared for adulthood and living on their own. School, friends, hobbies and work are all part of helping them grow up.

Prevent Problems

The best way to help keep your child healthy is to prevent problems from getting started. There are many different ways to prevent problems. Here are some of the most important ways:

• Keep giving your child penicillin until your doctor says to stop.
• Take your child for routine check-ups even when he is healthy.
• Make sure your child gets all the shots (immunizations) she needs.
• If your child has sickle cell pain, help your child manage it at home
• Follow your doctor's advice for care at home
  

Get Problems Treated Early

Not all problems can be prevented. But most problems can be handled if they are found and treated early. Watch your child for danger signs and call or take your child to see the doctor when needed. Also, take your child to the doctor for routine check-ups.

Help Your Child Take Care of Himself

Children with sickle cell disease need to learn to do things for themselves. Sometimes, it is hard for parents of a child with a chronic illness to allow their child to grow up. They may feel like they need to protect their child all the time.

Start young. Help your child do things himself. As he gets older, allow him to do more things independently. By the time he reaches the teen years, he will be able to handle most of his own care. Then, when he is an adult, he should be ready to live on his own.

Build Self-Esteem

There are many ways that you can help your child learn to feel good about herself:

• Listen to your child. Let her know that you value what she says and does.
• Praise her when she does something well.
• Spend time with her.
• Help her learn to do things that she can do well and enjoy. Expect success.

Children who have a chronic illness like sickle cell disease sometimes have poor self-esteem. Help your child see herself as a person, not just a disease. Make sure that you and others treat her as a whole person. Help her overcome any problems that get in the way. Expect her to succeed.

Take Care of Yourself and Your Family

You need to help your child with sickle cell disease stay strong and healthy. Your other family members also need you to help make sure that their needs are met. And you need to take time for yourself, too.

If is often hard to balance each person's needs. It is even harder when your child with sickle cell disease is having problems. Still, this is all part of your challenge. You may need to ask relatives or friends to help out with your family or to give you a break. Asking for help does not mean failure.

Get Expert Help When Needed

It is a sign of strength to reach out for help. If you, your child or other family members are having problems, get outside help. There are many sources of help. You can go to relatives, friends or a parent support group.

Doing Things Herself

Your child can learn to take care of herself, even though she has sickle cell disease. She needs to do things on her own. You still have to see that your child gets what she needs. But your job as a parent is changing. You need to help your child to become independent.

By age 6, most children want to start doing things themselves:

• Make her own breakfast or snack
• Dress herself and get ready for school
• Learn a skill, like playing the piano

Besides the things she wants to do she can also help out with things around the house:

• Help with household chores
• Clean up her room
• Set and clear the table
• Do the dishes

No matter what don't do everything for your child. When she does things for herself, she will feel good about herself. Other family members may feel that she needs special attention. Let them know how you want them to treat and interact with your child. Ask them to focus on what your child can do, not what she can't do.

Building Self-Esteem

Help your child feel good about herself. Pay attention to more than her problems. Notice her skills, her strengths, her interests and her style. Help her to get involved in things besides her illness:

• Playing music
• Being with friends
• Learning the computer
• Drawing or working with clay
• Playing chess or other board games
• Acting in a play
• Reading books

Accepting Herself

When your child starts school, she may begin to notice that she is different from other children. When she becomes aware of having a disease, she may feel afraid or even angry. She may think that she got sick because of something she did wrong. Make sure your child knows that she didn't get the disease because she was "bad." Nothing she did caused her to have the disease and nothing she can do can cause the disease to go away. Help your child to accept the fact that she has sickle cell disease and how to make the most of her life.

Be a Partner with Teachers

At the start of a new school year, go to the school and meet all of your child's teachers and the school nurse. Bring your child with you. Let your child ask any questions she may have and help her feel at ease. Tell the teacher about sickle cell disease. Give the teacher things to read so she can learn about the disease.

Explain your child's special needs:

• Get water when she is thirsty
• Go to the bathroom as soon as she feels the need
• Make up school work if she has to miss school
• Rest or slow down if she is tired or sore
• Rejoin the class as soon as she is ready
• Get medicine if she needs it.

Plan Ahead For Illness

Set up a plan with your child's teacher for your child to do homework or make up the work that she misses if she gets sick. Find out what resources your child's school has for children with chronic illnesses. If you don't think there is enough help, speak up before your child needs assistance. 

Starting To Let Go

Your teen may not take care of himself as well as you took care of him when he was younger. Try to let him do it anyway. Now is the time to begin shifting control from you to your child. You should start slowly, but keep moving towards giving him more and more independence. This will prepare him to take charge of his life as he moves closer to adulthood.

Setting Limits For Your Teen

As the parent, you are still in charge. You have the right to know what your teen is doing and who your teen is with. It is your job to decide how much freedom to allow. These limits should both protect your teen and support his growth. They tell your teen how you expect him to act.

Sickle Cell Disease and Risk Taking

Like other teens, younger people with sickle cell disease sometimes take risks. Many teens have a need to prove that they fit in with their friends. Drugs and alcohol, sex and fast driving are all things that some teens do to prove themselves. Teens with sickle cell disease may have a stronger need to prove that they fit in.

If your teen is taking risks that could be harmful, you need to get involved. Your teen needs proper and fair discipline, guidance and attention. Listen to your teen. Find out what is behind the actions and if needed, seek outside support. Dealing with risk-taking behaviors of any teen can be a confusing and challenging time. It is OK to get help.

Building Self-Esteem In Your Teen

Like other teens, teens with sickle cell disease sometimes struggle with low self-esteem. There are many things you can do as a parent to help your teen feel better:

• Listen to what your teen says
• Don't put down your teen
• Do things with your teen
• Help your teen to feel better about their body
• Let your teen know how good you feel about them
• Encourage your teen

Transition from pediatric to adult health care services should be a gradual process for your teen. Take the time and encourage your teen to become familiar with clinic services and get to know the doctors, nurses and staff who will work with your child to manage their sickle cell disease. Arrange for a tour of the adult sickle cell clinic. If your teen had been involved with a teen support group, ask if there are similar programs for adults to attend. Most importantly, encourage your child to attend all medical appointments and take medications.