My 7 year old son is 5 years 4 months post transplant. Here are some tips that help me help him manage his symptoms and experiences.
1) Experiencing routine bloodwork! Bloodwork is a part of your life if you're dealing with kidney disease. You'd think that as routine as it is for my son, he'd be used to it by now, but that's not the case. He is diagnosed with PTSD, so I've seen him completely freak out just before the needle goes in WAY too many times. I've noticed that if my son can keep his eye on the (actual) prize he's going to get upon completing bloodwork, it is a great enough distraction for him to hold still and let the phlebotomist get in and out successfully. If your child is motivated by stickers at the doctor's office, you're lucky! I keep a "prize pack" full of items from the dollar store with me for blood draws and he can pick from it. I started doing this when I noticed not all places have a "goody" for the kids like my son had grown accustomed to at all his pediatric specialists' offices. I realized that if my son could stare at the prize during the actual draw versus waiting until after to go in the prize pack to see what he could pick, he was much better. Keeping his eye on the (highly desirable) prize helped him stay still and make everything less traumatic for all parties. Again, I'm talking about a very small investment to help make this unfortunate yet highly necessary experience seem less traumatic for our kiddos.
2) Set alarms! Dosing medications at the proper time and staying on track with hydration goals (post-transplant) is a challenge, but will be made so much easier with the help of alarms on your smartphone. It takes a few minutes to set up/label alarms and it is well worth it. It's easy to get wrapped up in daily tasks and forget to check the clock. Make things easier on yourself and your child and set alarms. A medicated and hydrated post-transplant kidney is a happy and healthy one.
3) Communication! Keep the conversations easy with your child. Kidney disease is a scary thing and I find that I have to make sure there is a balance between fear and respect when it comes to my son's understanding of the disease. Can your child tell you why they can/cannot do certain things? If your child can understand and explain it, I find it really helpful in managing the disease. My son knows what to watch for and tell me about when it comes to things I cannot see (for example, does he feel any pain on the side where his kidney is located?). Also keep communication open with your child's doctors. When all parties know better, I find that they can all do better. Take time to establish and build good relationships with those doctors between yourself and your child, so that your child isn't afraid to talk to their doctor and share any symptoms with them that may otherwise seem scary to talk about. We're all in this together and some days feel lonelier than others, but when we keep the conversations going between friends, family, and doctors, it makes for a better experience.
