What kind of changes can I expect in my child’s life after an ARPKD diagnosis?


Children with autosomal recessive polycystic kidney disease (ARPKD) can still live fulfilled lives, and maintaining a high quality of life can often be a top priority for parents and caregivers. Some of the most common challenges faced by children living with ARPKD include: 

  • Academic challenges: Children living with ARPKD may be forced to miss school for doctors’ appointments, which may results in educational set-backs. You may choose to let your child’s school know of issues related to ARPKD, such as access to water for hydration and for the school nurse to know what signs to look for throughout the day. This may impact educational development throughout your child’s schooling. 
  • Low self-confidence: Children may be self-conscious about their appearance compared to other children their age, commonly due to short stature and enlarged abdomens. Children with ARPKD can experience physical development challenges, causing them to grow slower than their peers. They may also experience frequent urination, requiring special access to bathrooms in school and social activities. 
  • Fatigue: As some high blood pressure medications can cause sleepiness, children with ARPKD may sometimes face concentration problems due to fatigue. There are many things parents can do to mitigate this fatigue, including working closely with their school administrators and social workers to find a routine that works best for the child. This could include adapting physical activities and games for the child, or taking more frequent breaks and pauses throughout the day. Social workers can help ensure that this does not impact the socialization of the child at school by involving teachers and always encouraging other children to participate in any modified activities.