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The treatment, changes in diet, doctor's visits and lifestyle changes that come with chronic kidney disease (CKD) can be difficult for any patient, but can be even more complicated when the patient is a child. Many parents feel an immense responsibility to make the best decisions for their child's health and to maintain a sense of a normal family life for their child with kidney disease, as well as the rest of their family. If you are the parent of a child with kidney disease, these tips may help you manage your child's health.
1. Learn all you can about your child's kidney disease.
Talk to everyone on your child's kidney health care team, including physicians, nephrologists, renal nurses, social workers and renal dietitians. Understanding CKD can help you make informed decisions about your child's kidney care. It also makes it easier to talk to your child about his or her health, explain specific treatments and answer questions they may ask. Be sure to write down your child's medical history and bring to any doctor's appointments. You can also use the information to do more research on your child's condition.
2. Coordinate with a trusted family member or friend.
Have a back-up plan in place for any time you can't make it to a treatment or hospitalization with your child. Whether you coordinate with a close friend or another family member, be sure it's someone your child is comfortable with. Planning ahead will help everything run smoothly.
3. Explain CKD in terms your child can understand.
Often our greatest fear is fear of the unknown. Information can be a source of strength for you and your family. Use basic terms to explain to your child what CKD is, why they need certain tests and treatments and what to expect in the future. When your child knows what all the strange instruments and machines are used for, it will help ease anxiety and encourage cooperation.
Let your child be involved in his or her own care as much as possible. Even young children can be given choices, such as what beverage they'd like to have with their medicine. This empowers them by encouraging a sense of control.
4. Turn to your child’s kidney care team for help.
Everyone on your child's kidney health care team is working together for the good of your child. Consult your social worker for help managing your child's emotions, as some children may experience low self-esteem because of their condition. A social worker can also help your family with insurance and financial issues.
Talk with a renal dietitian to find out what your child should be eating to maintain a healthy kidney diet. You can also use DaVita Diet HelperTM to plan meals for your child and the rest of the family.
5. Try not to revolve your child's life around kidney disease.
Your child's life does not have to revolve around kidney disease. Have a schedule and stick to it. If you can work around kidney disease instead of making it the focus, this may take some stress off you and your child, as well as the rest of the family. Try to maintain a regular routine even if your child is in the hospital.
Remember that your entire family is affected by your child's CKD. Each person will need to find their own way of dealing with emotions. Attending a support group and talking to a social worker or other professional counselor can help lessen the stress you, your children or partner are feeling.
6.Take care of yourself, too.
Care partners often spend so much time meeting others’ needs that they forget their own. Be sure to schedule time for yourself on a regular basis. If your child is very young, find someone who can watch him or her once in a while so you can go shopping, visit a friend or do some other activity that relaxes you. There is also respite care when you can't find others to help. Remember, you can't care for others if you don't care for yourself.
If you're the parent of a child with kidney disease, take proactive steps toward managing your child's health, your family's well-being and your own needs.
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