www.kidney.org

Tips for Parents of Children With Chronic Kidney Disease

 

Having a child diagnosed with kidney disease/chronic kidney disease can feel distressing and confusing, which is understandable and normal. You will find in time that the reality of your child’s illness is manageable as you develop practical approaches to the daily coping strategies. In addition, you will find many resources to support you in this journey.

The National Kidney foundation (NKF) is dedicated to the ongoing research, treatment, and support of those with and affected by kidney disease. It is easy to donate to the National Kidney Foundation. Through the kidney cars donation program, many people are helped!

Educate yourself

  1. Dive into educating yourself as much as you can about your child’s disease and in turn, teach your child what you learn. Even very young children can understand much of their condition, and often times can assimilate and accept it better than adults.
  2. Invite your child to ask questions. Utilize the information through your doctor, nurses and other health professionals. Children often ask questions adults were afraid to ask or had not thought about for various reasons.
  3. Keep your explanations simple, tell the truth, and keep positive about the treatments and procedures.
  4. Keep a dialogue going to help your child recognize that the health care professionals helping them with their care are is truly on their team and that your child has a whole crew of people specially poised to help your child feel better. You will find many moments of discomfort for your child, and it is important to keep up morale and confidence that all are there to help.

Take an active role in your child’s care

  1. Develop relationships of respect and appreciation with your health professionals.
  2. Keep personal records of medical history and the ongoing treatment, its effects, and questions you may have. It helps as you will interact with new doctors and health care professionals. Remember to include dates, names and places.
  3. It makes a world of difference in your child’s treatment and healing to be with your child as much as you can during any hospitalizing and treatments. Sometimes you may not be able to be there and you can coordinate with someone else to be present. Include items of comfort and security such as favorite books or stuffed animals. It is helpful to have a bag packed in case of a last-minute rush.

Help your child understand throughout each process

  1. Maintaining normal daily routines, even while being hospitalized, is very helpful. Spending time explaining and showing your child how things work will be a great investment of energy toward their overall well-being.
  2. You can help decrease your child’s fears about these new experiences and places by encouraging them to discover what these places are all about. Teach them about their doctor's offices, what the hospital does, the purpose of the laboratories, etc.
  3. Give your child as much opportunity as you can to participate in their own care.

Diet changes are not the end of the world

  1. If explained simply, a 2 or 3 year old child can often understand that eating well will support their health. Dietary restrictions are often more easily followed by children than adults.
  2. Talk with your child’s dietitian about incorporating versions of their favorite foods.
  3. It is vital to never use force or bribes when getting your child to eat.

Medicine time, getting through it

  1. Make medicine time a non-issue event. In other words, be matter a fact and straightforward, while avoiding lengthy discussions on it.
  2. With small it can be effective to use medication syringes to administer the medication. It allows for accurate measuring of medicine and quick delivery straight into the mouth.
  3. While your child does not have a choice over taking medication or not, you can give them a choice in when and where they get it. Make a schedule with the help of your child and try to stick to it.
  4. It can be helpful to administer medicine somewhere other than where the child normally eats in order to not create an association with it. Distraction can be a great way to get the meds in, while your child watches a movie, for example.

Talk about it with others

  1. Avoid isolation. Connect with people who are also facing kidney disease.
  2. Accept and even ask for help from relatives and friends. Many times, people are just waiting to be asked.