A diagnosis of Polycystic Kidney Disease can feel devastating; it can be even more devastating when that diagnosis comes for a child. Parents and guardians begin searching for answers, trying to look for anything that will make understanding this new life of dealing with a chronic disease easier. There are many organizations that can help with parent and patient education, support services, and even opportunities to help. These organizations are funded by charitable donations, vehicle donations, as well as some government grants.
1. What You Need to Know First
If you’ve found yourself in this situation remember: there is a learning curve to follow when you receive the initial diagnosis of PKD, but these first steps will make your job as a parent much easier.
Do your homework: educating yourself on what PKD, what it isn’t, and what your life may look like, can help you to work out mentally how you plan to handle the new "normal".
Encourage your child to question: Your child is going to have questions and will be wondering what life will be like now as well. Encourage them to ask their questions, to you, to nurses, to doctors and specialists. This is their health and they are the most important member of the team. Let them know it’s okay to ask questions and share their concerns.
Explain appropriately: Some explanations can cause more fear than they prevent. Gauge your child’s readiness to have procedures, complications, and possibilities explained to them. Don’t tell more than they are ready for, and don’t apologize for necessary procedures. If you are firm in your resolve to give them the best treatment, they will accept it more readily.
Explain the medical team’s role: It can be difficult for a child to separate the discomfort of medical procedures from the medical personnel who must perform them. It will help your child if they understand that the doctors are on their side and want to help them.
2. Be Proactive
You are your child’s most important advocate for good care. Here are a few tips to help you get the most out of your medical team.
Develop a relationship of mutual respect with your medical team.
Be present for as many treatments and procedures as you can. This might be difficult with work schedules, but having a parent present can make a child feel more secure.
Keep a record of your child’s health history as well as likes, dislikes, favorites, etc. This will make getting them the care they need easier on everyone.
3. Empower Your Child
Being diagnosed with a chronic illness can make a child feel powerless, empowering them through routine and education can ease that feeling.
Develop or keep as normal a schedule as possible. Keep the same requirements they had before: homework, chores, respect, etc.
Educate your child about the purpose of hospitals, labs, and the roles of doctors.
Let your child do as much for himself as he can. This can range from helping with his medicine to planning trips to the hospital.
4. Accept the New Diet
A diagnosis of PKD typically means a change in diet for most patients and their families. Here are some ways to help your child with this change.
Explain clearly. Explain why the dietary changes are necessary, which ones will be implemented, and what that means for your child. Most children appreciate clarity.
Be firm. If your child sees you wavering on what they can or can’t eat they will be more likely to beg, cajole, and plead with you for their favorite treat which might not be on the new diet. Stick to the plan that will give your child the highest quality of life.
Encourage questions again. Let your child participate in discussions with your dietician. Let them ask about favorite foods.
5. Treat Medicine as a Non-Optional Event
No one likes icky medicine, and children probably like it least of all, but it’s essential for your child’s health. If you treat it as a non-optional event in your child’s day, one that no amount of whining will change, the new schedule will eventually become easier to accept.
Be firm and matter-of-fact. This is simply the new normal.
Use creative ways to help children take their medicine. A syringe with no needle or a spoonful of applesauce or yogurt can help it go down easier.
Give your child some control. Let them have an option between two or three acceptable times to take their medicine. This small concession to their choice can go a long way towards lessening medicine time angst.
Use distraction to your advantage. Offer medicine when a child is distracted by a movie, television show, or video game.
6. Seek Support
This might be a new path, but it doesn’t have to be a lonely one for you and your family. Join a support group, talk to friends and family, don’t treat the disease as a dirty secret. Remember to ask for help when you need it. Friends and family often want to help when and where they can but don’t always know what is okay. Invite them to be a part of the new normal at your house.