ARPKD Living Questions

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. 
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What support is available for sharing the information about ARPKD with my child and family?

Knowing your child has been diagnosed with ARPKD can be very difficult. Sharing information is a very personal choice, and there are often many factors to consider. It can be helpful to answer questions in a simple, easy way, rather than providing an overwhelming amount of detail.

The PKD Foundation of Canada has many resources available for all those affected by PKD, including chapter meetings, online resources and information, and an automated phone service for any questions. Click here for more information. 

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What is the risk of an APRKD diagnosis in my other or future children?

Parents of a child with ARPKD have a 1 in 4 chance of conceiving another child with the disease, and a 1 in 2 chance of being a carrier of the disease. Carriers of the ARPKD gene typically do not experience any symptoms of the disease. Prenatal diagnosis of ARPKD is possible in at-risk families through genetic testing. ARPKD does not directly involve the reproductive system, and having the disease does not decrease the changes of having children, however it can pose potential risks complications, leading to a decreased likelihood of a successful pregnancy. 

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What about sports? What are the physical limitations that accompany an ARPKD diagnosis?

Yes, children living with ARPKD can still participate in sports! Physical activity can help reduce blood pressure and generally improve one’s quality of life through socialization and play. Children can enjoy a wide variety of sports, including cycling, swimming and running in order to maintain physical activity and participate in social activities. As with all children living with a chronic illness, sports should be considered on an individual basis, depending on the child’s health and the intensity of the sport. Contact sports, like hockey, football and basketball, can put children living with ARPKD at increased risk for an injury to the kidney or spleen.

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Can families caring for a child with ARPKD take vacations?

Children and families living with chronic illnesses need to have fun and build memories like all other families. The primary consideration when it comes to traveling is of course the stability of your child’s health. However, if your child is stable, there is no reason why you can’t travel! As with any change, check in with your child’s healthcare team if you have questions and to discuss any restrictions. If your child is on dialysis, there may be equipment and supplies you will need to bring, or a need to arrange for treatment at a facility near your vacation spot.

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What support is available for stress and financial management?

Many children’s hospitals typically have social workers assigned to kidney and liver patients that can help identify resources in your area and assist with the paperwork. Make sure to keep copies of all tests administered; many parents find it helpful to keep a large binder to organize records of blood tests, sonogram reports and doctors letters for future reference. This can also help provide additional information when applying for provincial or federal assistance, if required. The PKD Foundation of Canada’s local chapters can also provide additional support through chapter meetings and online resources for those afflicted by ARPKD. Click here to find your local chapter.

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