If your child has been diagnosed with ARPKD, you probably have many questions. It’s time to take the first steps towards becoming their primary healthcare advocate. Below are some of the most important and common questions you should consider asking at the first appointment. 

• What is the current renal function? 
• How can we decrease the progression of CKD? 
• What are some of the side effects we can expect at this time, and how can we mitigate them? (for example, anemia, hypertension, growth failure) 
• How is the liver performing? 
• How often should we check blood pressure, and what is the reading goal? 
• Are there any dietary of physical restrictions we should be aware of? 
• What kind of medications will my child need to take? 
• Should we be concerned with a fever? 
• What is the timeline for follow up appointments? How often will appointments take place? 
• Are there any other specialists we should see?