It's hard work being a parent. It's an even harder job to be a parent of a child with chronic kidney disease. You may feel lost, confused or distressed. But you don't have to feel this way.
Coping with your child's disease can become easier if you take an active role in your child's care. By making important changes to your family's lifestyle and routine, you can ease some of the stress of having an ill family member and help your child manage a serious condition.
The following article offers tips to parents on how to manage their child's kidney disease while also paying attention to the other needs of a growing human being.
Learn about kidney disease and its treatments
It is extremely important to understand your child's disease. Learn how kidney disease is treated, what lifestyle changes are necessary and how to spot changes in your child's symptoms.
At first, you might think your child is too young to understand the ins and outs of kidney disease, but you'd be surprised by how much they can learn. Pass on what you have learned to your child so that both of you are on the same page when it comes to managing kidney disease.
Still, there are some things your child may not understand. Even in these cases, you must not lie or sugarcoat the truth. Don't apologize if your child is unhappy about necessary treatments or procedures. Your child should know that these treatments are needed to keep the disease from getting worse.
Foster your child's curiosity
Encourage your child to ask questions. Don't feel discouraged if you don't have the answer to every question. That's what doctors, nurses and other healthcare professionals are for. However, your child might not feel comfortable with these people right off the bat. Let your child know that these professionals are there to help and are ready to answer any question.
Your child may ask questions you didn't think of or were afraid to ask for fear of sounding dumb. But when it comes to your child's health, there is no such thing as a dumb question.
Take an active role in your child's care
Develop a two-way relationship with your child's doctor and other health professionals. The relationship should be one of respect and cooperation in which all parties can speak openly.
Your child's doctor should know as much as possible about your child's medical history. Write down all the details of your child's medical history to make each visit with a new doctor easier.
During treatments and hospitalizations, try to be by your child's side as much as possible. If you can't be there, find someone else your child trusts to attend. You should also make sure your child has his or her favorite stuffed animal, book or blanket for added comfort.
Some children with kidney disease are not old enough to talk yet. If this is your child's situation, make sure you leave detailed instructions or a note attached to a hospital bed or crib to let doctors and nurses know your child's favorite foods, toys or blankets and other special information.
Help your child manage kidney disease
A normal routine is key for any child. Help your child maintain a daily routine even if he or she is in the hospital.
Let your child know how doctor's offices, hospitals and dialysis clinics work. If children become familiar with these environments, they are less likely to be afraid of the strange tools and machines used to track and treat their disease.
Help your child understand and accept their new diet
Living with kidney disease can require serious changes to a patient's diet. In many cases, children are more willing to accept dietary restrictions as they haven't developed lifelong habits.
Ask your child what about his or her favorite foods. Then take your child to a dietician to see if these foods can work with their diet plan.
It's important not to use bribes or force certain foods on your child. Doing so can take the fun out of mealtime.
Make taking medicine a pleasant experience
It's not always easy to get a child to take medicine. But if your child knows there's no other choice, they are likely to take medications.
If you have a baby or small child with kidney disease, you can use a syringe without the needle to give them their medication. A syringe can make it easier to measure doses. Instead of forcing a spoonful of medication down your child's throat, the syringe allows you to easily squirt the medication into the mouth.
Even though your child can't choose whether or not to take medications, they can choose when and where to do it. Let your child set the schedule and help him or her stick to it.
Share your experience with others
Helping your child manage kidney disease is no easy task. But you're not alone. Many other parents are dealing with the same issues.
Talk to other families of children with kidney disease. Talk to your doctor and other healthcare professionals. All of these people can offer guidance on how to cope with and manage your child's disease.
Ask your family and friends for help. They may not have offered help right off the bat because they don't know how to help. Just ask and they are likely to offer their assistance.