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Chronic kidney disease (CKD) is difficult for adults who have it. There are changes in the diet, medicines to take, doctor visits and treatments, including dialysis, for those with end stage renal disease (ESRD). Chronic kidney disease can be even more complicated when the patient is a child. Parents feel an awesome responsibility to make the best decisions for their child’s health care and to maintain a sense of a normal family life for their child with kidney disease as well as their other children. Here are some tips that may help parents deal with their child’s chronic kidney disease.
Talk to everyone on your child’s kidney health care team, including physicians, nephrologist (kidney doctor), renal nurses, social workers and renal dietitians. Once you understand chronic kidney disease, it helps you to make informed decisions about your child’s kidney care, and it becomes easier to talk to your child about his or her health and explain about specific treatment and answer questions.
Write down your child’s medical history so that you have the information ready whenever you need it, such as when you are meeting with a physician or other health care professional for the first time. You can also use the information to do more research on your child’s condition.
Be an active participant in your child’s care. Whenever your child requires a treatment or hospitalization, go along to give support and talk to the health care providers. If you cannot go, make sure your partner, parent, relative or friend can go in your place. When your child is having a treatment or is hospitalized, be sure to bring a favorite toy or blanket for comfort. You may want to keep a small bag packed with a book, stuffed animal or other toys ready to go when needed.
Don’t shy away from the facts. Information can be a source of strength for you and your family. If your child is very young, you can still let him or her know what is occurring and why in basic terms your child can understand. For older children, it helps if they know what is happening with their bodies, why they need certain tests and treatments and what to expect in the future.
Often our greatest fear is fear of the unknown. Explain to your child exactly what treatments he or she will be undergoing and where the treatment will take place. When your child knows what all the strange instruments and machines are 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.
Everyone on your child’s kidney health care team is working together for the good of your child.
Your child’s social worker can help with the emotional side of dealing with chronic kidney disease for you and your child. Children with chronic kidney disease may experience low self-esteem, especially if other children have teased them about their condition. Your child’s social worker can help you find ways to focus on the positive and find ways to enhance your child’s self-confidence. For example, your daughter or son may have a musical talent, such as playing an instrument or singing. Whatever your child’s passion may be, explore ways to help encourage and develop it. Creative pursuits can enhance well-being while serving as an effective outlet for feelings.
In addition to coping issues, social workers also help with insurance and financial issues. Talk to your child’s social workers if you have questions about how dialysis is paid for and ask about programs that may be available to help with the financial aspects of treatment.
Your child’s dietitian can help explain the importance of the renal diet and will recommend foods to eat as well as those that should be limited for children with chronic kidney disease. Because your child is growing, good nutrition will be important in your child’s development. For children on dialysis, the kidney diet may include fluid restrictions in addition to food restrictions. Your child’s dietitian can provide meal plans, kidney-friendly recipes and information to help you prepare foods that are healthy and nutritious for a child with 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 with kidney disease, 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 chronic kidney disease. Any chronic illness will bring about emotional ups and downs. Each person will need to find his own way of dealing with emotions. Recognize when family members are having difficulties. Find positive ways to deal with feelings, whether it’s sadness, guilt, anger or grief. Often attending a support group or talking to a social worker, other professional counselor or another person who has a loved one with kidney disease can help lessen the stress you, your children or partner are feeling.
Take care of yourself, too. Caregivers often spend so much time meeting others’ needs 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 a week for an hour or two while you go shopping, visit a friend or do some other activity that relaxes you. Turn to someone you trust, such as a close friend or pastor, and express your feelings openly to that person. Remember — you can’t care for others if you don’t take care of yourself.
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