BACK TO SCHOOL: PROBLEMS FACED BY PEDIATRIC KIDNEY PATIENTS AND THEIR CAREGIVERS (posted Sept. 4, 2018)
By Jim Myers, AAKP BOD and Ambassador
Have you seen children’s faces when they go back to school? They are all happy and smiling, with their new clothes, shoes, backpacks and school supplies. It’s a chance to see all their friends again. But for some students, it may not be a joyous occasion. For some pediatric kidney patients, it may be an endless conflict between other students and the administrators/teachers of their school. Children with kidney disease frequently miss school, for dialysis, doctor appointments and illness. The main issue becomes, has the child attended enough days during to school year to continue to the next grade? Is the pediatric kidney patient under constant attack due to his/her incurable illness?
According to National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), these children do face complex and difficult issues at school:
“Serious and long-lasting conditions like kidney failure affect many parts of a child's life. Having kidney failure influences a child's self-image and relationships with peers and family. It can lead to behavior problems and make achieving goals more difficult. Being aware of these problems can help you recognize that your child may need some additional guidance or understanding at times.[i]”
Pediatric Kidney Patients May Have Trouble Learning
Because of the nature of kidney disease and the unique issues it causes, children with kidney disease may have issues at school. These disease related issues may cause them medical issues that interfere with learning. The kidneys’ job is to create a chemical balance in the body, riding it of waste products, while maintaining a balance leading to growth and good overall health. In pediatric kidney patients, there is a failure to balance the chemistry properly, resulting in issues that could impair learning. In many children with kidney disease, this results in a slowing of growth and a diminished size in appearance. The buildup of toxins in the body can result in poor brain and nerve function. Concentration and the ability to learn, comprehend and state back what you have learned are inevitably affected. Language and motor skills are also affected. If kidney disease occurs early in an infant child, more severe problems can occur. Many of these children are on a feeding tube to try to make up for the loss of nutrients. Only transplantation and/or dialysis can improve this situation. The very treatment that enables the child with kidney disease to be successful in school, may be the greatest source of friction between school and child’s parent/caregiver.
Low Self-Esteem and Socialization
Because of a diminished size, a feeding tube, brain fog and frequent incontinence, it is a small wonder that the child afflicted with kidney disease can suffer from low-self-esteem. As a result, they frequently have difficulty with their peers. These children feel depressed, powerless and excluded, simply because of the effects of kidney disease. It is no surprise that not only children, but many adults, teachers and administrators do not understand the plight of the pediatric kidney patient.
Poor Attendance at School
The challenge then, is to try to help children with kidney disease feel as normal as the “other kids.” The first step is to inform teachers and administrators of your child’s illness and limitations.
Recently, I attended a seminar in Kansas City for PKD patients. A parent of a child with kidney disease spoke about meeting with a teacher to discuss the frequency of bathroom breaks. The teacher had a hard and fast rule that a student could only go to the bathroom once every four hours. The mom had to explain to the teacher that with a diminished size, comes a smaller bladder, and an exception had to be made for her special needs child. An exception was indeed granted.
The real issue here is how do we deal with children that do in-center hemodialysis or have medical appointments or frequent medical issues? After every effort has been made to schedule kidney activities around the school’s schedule, how is the pediatric kidney patient protected?
Under The Individuals with Disabilities Education Act (IDEA, Public Law 94-142):
“… every child is entitled to an appropriate education and directs school districts to provide special services to ensure that children with disabilities are able to participate in regular classrooms to the fullest possible extent. Your child may need tutoring or vocational rehabilitation. Work with school counselors to find the best arrangement for letting your child work at a comfortable pace while also spending time with other children.[ii]”
Even in School Pediatric Kidney Patients Must Take Their Meds
Another problem that children with kidney disease who attend school face is dealing with their regimen of taking their medications. This is a particular problem with adolescents. According to the NIH, only half of adolescent kidney patients take their medication as prescribed, including kidney transplant patients[iii]. What is the solution?
“Health professionals use the terms "noncompliance" or "nonadherence" to describe a patient's failure or refusal to take prescribed medicines or follow a doctor's directions. Teenagers with transplanted organs may be noncompliant because the immunosuppressive drugs they must take change their appearance in unflattering ways. A child psychologist may be able to suggest techniques that reinforce desired behaviors. But communicating clearly about the reasons for treatment and the importance of following the regimen is an important part of helping all patients, including children. Children who understand that their decisions can affect their health are more likely to take responsibility for their actions.[iv]”
Pediatric Kidney Patients are not Likely Allowed to Participate in Sports and Many Extra-Curricular Activities
Another problem leading to isolation is that many pediatric kidney patients are not allowed to participate in sports or many extra-curricular activities. In many cases, the pediatric nephrologist may restrict their patient from sports and require long periods of rest. This also results in further isolation from the child’s peers at school. Fortunately, exercise and some light exertion can be good for the overall health of the pediatric kidney patient. Follow the advice of your physician on this issue.
Issues Making Friends
Pediatric kidney patients frequently have difficulty making friends. They have trouble fitting in because of their height, cognitive difficulties, incontinence, absences and learning disabilities. Kidney transplant patients may suffer some physical side-effects due to anti-rejection medication, like prednisone. This makes relating to peers very difficult. A child psychologist or the social worker at your dialysis center may be helpful to suggest methods to help integrate the child into school society. Active participation in the classroom, extra-curricular activities and special needs summer camps may be helpful with socialization at school.
People Who Can Help, May Be Costly
There are people who can help with these issues. These people would include:
- Social Worker from Your Dialysis Center
- Accountant/Bookkeeper to help manage medical bills
- Non-Medical Emergency Transportation
While many of these services are free, many come with potentially high costs that may be difficult to pay for households already over-burdened by the cost, expense, time and mental pressure of caring for a child with a chronic disease.
The life of a pediatric kidney patient at school may be very difficult for the patient and his/her parents or caregiver. School is supposed to prepare students for a work life in adulthood. Just imagine the difficulties an adult would have in the workplace after school is over if they are of diminished size, with cognitive difficulties and medical, hospital and dialysis appointments that require a reasonable accommodation under the Americans With Disabilities Act from day one of employment. Success at school could mean success at the workplace. Every effort should be made to insure these children get their best shot at succeeding in school. Pediatric kidney patients deserve nothing less than our very best efforts to advocate on their behalf.
The American Association of Kidney Patients has recently started an initiative to bring to light the plight of the child kidney patient. Please join us! Visit https://aakp.org/pediatric-kidney-pals/ to sign-up for the newsletter and stay up-to-date on AAKP’s initiatives for pediatric kidney patients and their families.
[i] School & Family Problems of Children with Kidney Failure, www.kidneyurology.org/Library/Pediatric/School_Family_Problems_Children_With_Kidney_Failure.php NIH Publication No. 06–5165, June 2006.
[iii] NBC News, Doctor’s text nagging prods teens to take meds, http://www.nbcnews.com/id/24581894/ns/health-health_care/t/doctors-text-nagging-prods-teens-take-meds(2008)
[iv] School & Family Problems of Children with Kidney Failure, www.kidneyurology.org/Library/Pediatric/School_Family_Problems_Children_With_Kidney_Failure.php NIH Publication No. 06–5165, June 2006.