If you are the parent or caregiver of a child between infancy and eighteen years of age the information on this page may be very helpful for you. This section is not intended to provide answers to all questions, but to provide general information to help give your child the "Hope For A Brighter Future".
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.
Get the best medical care
Take good care of your child at home
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.
Take care of yourself and your family
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, friend, hobbies and work are all part of helping them grow up.
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:
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.
There are many ways that you can help your child learn to feel good about herself:
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 you, 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 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 parent is changing. You need to help your child to become independent.
By age 6, most children want to start doing things themselves:
Besides the things she wants to do she can also help out with things around the house:
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.
Help your child feel good about herself. Pay attention to more than her problems. Notice her skills, her strengths, her interest and her style. Help her to get involved in things besides her illness:
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:
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 right to now 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 will 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 time as well as a challenge. It is OK to get help.
Building Self-Esteem In Your Teen
Like all other teens, teens with sickle cell disease may sometimes have low self-esteem. There are many things you can do as a parent to help your teen feel better about himself:
Transition from pediatric to adult health care services should be a gradual process for your teen. Take the time to allow your teen to get to know the doctors, nurses and staff in addition to the services that will be available to him. If your teen had been involved with a teen support group ask if there are similar programs for adults.