Living with ARPKD

Children with ARPKD still have a life to live – despite their diagnosis. Keeping the quality of life high is a top priority. This section deals with issues such as exercise, nutrition and emotional affects – to help keep your child healthy and happy.

 

Common Questions

Click a question below to show or hide the answer.

Will my child be able to have children and if so, will their children also have ARPKD?

Since ARPKD does not directly involve the reproductive system, merely having the disorder does not decrease the chances of having children. However, the presence of medical complications of ARPKD such as kidney failure can decrease the likelihood of a successful pregnancy. The child born to a parent with ARPKD can only develop ARPKD themselves if their other parent is a carrier for the disease.

How will ARPKD affect my child's experience in school, academically and socially?

Many children with ARPKD or another chronic illness are forced to miss class for doctor visits, and frequent absences may lead to academic challenges. Children may be self-conscious about how they look compared to other children their age. Short stature and enlarged abdomens are common appearance issues children with ARPKD may face.

Also, children with ARPKD often have to urinate frequently and sometimes have accidents. Parents suggest working closely with school officials (sometimes through a special education plan) to make sure children have ready access to bathrooms and water, as they may need both more frequently than other children. Finally, some high blood pressure medications can cause sleepiness, which can be a problem in the classroom. Currently, there isn't any research on whether high blood pressure and blood-pressure control medications causes behavior problems. Parents and children can get help dealing with these academic and social issues by speaking with a developmental specialist.

Will my child develop at a similar pace to other children?

Depending on what challenges are faced in the first year of life makes a big difference as to whether or not your child will develop at a similar pace. If a child spends months in the NICU, perhaps on a ventilator, there are effects that can last through the first couple of years. That child will not have built up regular muscle tone and may or may not be capable of taking a bottle or nursing. Like with any disability, muscles that are not engaged take extra work to catch up, often in the form of physical or occupational therapy. Early Intervention can be very helpful for this. As mentioned, many kids with renal disease have difficulty growing at the same rate as their peers. Once transplanted, children often make up for lost time in height but may not reach their full growth potential without the assistance of growth hormone. It is believed that children with chronic renal disease are cognitively just as bright as others, however, as with many chronic illnesses, the side effects of the disease can hamper the ability to keep up in school, have the needed energy and attention span, and/or have the self confidence to succeed without struggle.

Will people be able to "tell" something is wrong with my child?

Some children with ARPKD have very large bellies due to their enlarged kidneys and/or enlarged spleens. Also, many children with ARPKD have growth issues and are shorter than their peers.

Can my child play sports?

Contact sports such as football, hockey and basketball can place children with ADPKD at increased risk for popping or tearing a cyst. For children with extremely large kidneys, even running can be uncomfortable. Another worry for children with ARPKD is rupturing of the spleen, which can be enlarged due to CHF. There are spleen guards children can use to prevent this from happening, and despite certain challenges, there are ARPKD patients who are cyclists, runners and swimmers. Sports are not out-of-the-question but should be considered on an individual basis, depending on the child's health and the intensity of the sport, and many children with ARPKD do enjoy a variety of athletic and extra-curricular activities. Regardless of the athletic endeavor, it is very important for children to stay well-hydrated.

Will all of my children have ARPKD?

Parents of a child with ARPKD should be informed that each new pregnancy will have a one in four chance of inheriting the disease and a one in two chance of being a carrier of the disease. Those children who are carriers are unaffected by ARPKD and males and females are equally at risk for the its development.

How can I know whether my next child will have ARPKD?

Prenatal diagnosis of ARPKD is possible in "at-risk" families or those families in whom there has already been at least one child with the diagnosis of ARPKD, by using a genetic testing technique called linkage analysis. WHAT DOES AT RISK FAMILIES MEAN? Most important is the fact that this is an indirect approach to the diagnosis and the accuracy of the technique is completely dependent on confirmation of the diagnosis in the previously affected sibling. The prenatal diagnosis may also be suggested after 24 weeks of gestation in severe cases by the antenatal ultrasound findings of enlarged and/or echogenic kidneys and little amniotic fluid.

If my child does not have ARPKD but is a carrier of the disease gene, what does that mean?

At the present time, the conventional wisdom is that carriers of the disease gene will not experience any of the typical features of ARPKD.

Will I have a hard time potty-training my child?

Some parents experience a more difficult time potty-training because of the amount of urine and report that their children with ARPKD trained at a later age than typical. Because excess urine can be an issue, many wear pull-ups at night after trained during the day.

What kinds of emotional issues might my child experience?

It depends on the child and their personality. Children handle the stress of a chronic illness differently, as do families. Some children have experienced post-traumatic stress syndrome (PTSD) as a result of repeated medical interventions. They might have issues with behavior because of the frustrations to keep up with their peers or they may have social issues because of self-confidence. It's important to know that issues can appear and if they do, should be addressed. You know your child best and so if you see that your child is struggling, step in with external support.

Will my child need a counselor/therapist?

It's possible your child may need a counselor or therapist. If your child is struggling educationally, socially, or emotionally it's best to get recommendations from other parents and health care professionals for a therapist or psychologist and have your child evaluated.

Will my child need an Individualized Education Plan (IEP) or 504 plan?

Not all kids do, but even for some that do not have delays, parents choose to have the school know the issues related to ARPKD such as access to water for hydration, access to a restroom throughout the day, and for the school nurse to know what signs to look for if there is an emergent situation. If your child spends time in the NICU following birth, parents say it is important to check with the hospital social worker to see about Early Intervention and whether or not your child should be evaluated for services.

Can we take vacations?

Kids and families with chronic illnesses need to have fun and build memories like all families do, and the only consideration is the stability of the child's health. If your child is stable, there is no reason why you can't travel, but, as always, check with your child's care team if you have questions. If your child is in guarded condition, it's best to discuss with your care team any restrictions. For kids on dialysis, traveling means more planning. For kids on the United Network for Organ Sharing (UNOS) list waiting for a kidney, liver or both, typically doctors do not recommend being too far away from transplant center.

How do you handle dialysis when on vacation?

It is harder to travel while your child is on dialysis. If he or she is on peritoneal, there is equipment and supplies to bring with you, and if your child is on hemodialysis at a center or Children's Hospital, you will need to arrange treatment at a facility near your vacation spot. Your center or hospital social worker will be able to assist you in finding a treatment center as well as schedules and they will communicate your child's dialyzing needs with the center before your trip.

Are there any groups that provide financial support for our medical bills?

In addition to Medicaid and Medicare, if you qualify (all children on dialysis or transplanted qualify for Medicare), there are some organizations out there that offer assistance. Children's Hospitals typically have social workers assigned to kidney and liver departments that can help identify resources and assist with paperwork.

How should we handle life insurance?

Parents who have already been through the process suggest getting life insurance before testing siblings of an affected child.

What is the best way to keep medical records organized?

Make sure to keep copies of all tests administered. Parents recommend keeping a big binder with separate tabs for blood tests, sonogram reports, doctor's letters to each other (for example, specialists typically write a follow up letter for your pediatrician's files.) Parents say it is extremely helpful to have these records handy for other specialists that join the care team and saves you time in collecting them from different offices. In addition, if you ever need to apply for funding from state or federal assistance you will have it easily available.

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