PEDIATRIC
KIDNEY PATIENTS: UNDER REPRESENTED?
Are our
CKD/ESRD children an ignored, under represented, under reported group of kidney
patients? Are they overlooked because the group is less in numbers than
adults? Are they treated like
second-class kidney citizens?
A
Few Stats
·
Pediatric ESRD Patients, less than 20
years of age, constitute a very small portion of the ESRD population, however
some authorities say the total ESRD population, including pediatric patients
may really be up to 50xs as much as estimated;
·
In America, Children under 20 accounts for
less than 2% of the ESRD population.
Taking the United States Renal Data Systems Annual Report, (2017)(Chapter 2),
Centers for Medicare and Medicaid Services, the current estimate of
the ESRD population for children and adolescents is approximately 13.7 per
million population as of 2015;
·
As of December 31, 2015, the prevalence of
children and adolescents, 0-21 years with ESRD was 9,672 or 99.5 per million
population. An additional 10,251 adult
survivors of the childhood onset of ESRD contributed to the 2015-point
prevalence of ESRD of adults;
·
The prevalence of 0-19 yr old CKD patients
has grown 32% since 1990;
·
During the period between 2011-2015, the
proportion of missing, unknown or unspecified etiologies of incident was
markedly high in the 18-21-year-old age group at 27%;
·
Short stature is common in children and
adolescents with ESRD; this affects the majority of young patients between the
ages of 0-4 or approximately 52.7%.
·
CKD in children is a devastating illness!
The mortality rate for ESRD children receiving dialysis is between 30-150xs
that of the general Peds population. The
life expectancy for ESRD children 0-14 receiving dialysis is only 20 years of
age. According to NAPRTCS, between 1996-2004,
there were 3200 Pediatric ESRD Deaths!
WHEN
I BECAME A BELIEVER
Let me tell you when I became interested in pediatric
patients. There was a little boy on
Facebook in a video his mother had made.
He was approximately 6 years old, diminished size, wearing a diaper,
sitting in a sink partially full of water, crying. Obviously, he had a major melt down. His Mom was trying to calm him. He was on dialysis and on a fluid
restriction. He was thirsty and asking
repeatedly for water. He did not understand
why everyone could drink all the water they wanted, but not him. Flailing his arms, clinched fists,
screaming. Demanding water. Mom finally got him to settle for a small
amount of ice chips.
Sometimes
you have to moved emotionally before you are moved intellectually, and that was
the case with me. It slowly began to
occur to me that not only did the pediatric CKD/ESRD/Dialysis patient have the
some of the same issues that I had, but they had their own, unique difficult
issues to face. How do you explain to a
young child, an infant, a teenager that they are on fluid restriction and they
cannot drink fluids in the same amount that their peers do?
How
do you ask a teenage girl to comply with diet restrictions, her medications
regimen after transplant, when she’d rather be around her friends? Recently, Vector
Children’s Hospital reported that young kidney recipients are 60% more likely
than adults to miss taking their immunosuppressive/steroidal medications.
THE
CONFLICT BETWEEN WHAT THE EXPERTS THINK IS IMPORTANT AND WHAT THE MOMS THINK
ARE IMPORTANT?
THE EXPERTS
There
is a notable conflict between what issues the Experts from the NIDDK/NIH
recognize as unique to Pediatric Kidney Patients and what Kidney Moms think are
important issues. From the Experts, here
are their issues:
1.
Pediatric
Patients Suffer From A Slower Growth Rate Than “Normal” Children.
a. Damaged
kidneys slow a child’s growth by causing a mineral & bone disorder due to
lack of Vitamin D and high levels of phosphorus. This in turn causes an
imbalance of sodium, potassium and acid in the blood. As a result, growth slows to bring balance
back.
b. This
in turn leads to a decreasing appetite as a Kidney Kid may not be hungry or
have the energy to eat. Poor nutrition leads to a much slower growth rate.
c. This
in turn leads to a decreased production of erythropoietin leading to anemia.
d. This
in turn leads to making an abnormally large supply of urine, further disrupting
the body’s fluid balance.
e. The
damaged kidneys prevent the body from correctly using the growth hormone.
f. This
is why so many pediatric kidney patients end up on a feeding tube.
2.
Pediatric
Kidney Patients Frequently Suffer from Urinary Incontinence
a. Children
with CKD may grow at a slower rate than their peers and the loss of bladder
control which results in accidental loss of urine is common, resulting in
isolation for the Pediatric Patient.
3.
A
Negative Self-Image/Low Self Esteem
a. Frequently,
as a result of the diminished size, the feeding tube and incontinence, the
Pediatric Kidney Patient develops a poor self-image.
4.
Pediatric
Kidney Patients Frequently Develop Relationship Problems
a. Pediatric
Kidney Patients all too often have relationship issues. These conflicts would include the following
groups:
i.
Family members
ii.
Making friends
iii.
Participating in physical activities &
sports
b. Even
with a transplant, the side effects of the meds in children may result in a
moon face from Prednisone, weight gain, acne, or facial hair, inhibiting social
interaction.
5.
Pediatric
Kidney Patients Frequently Suffer From Behavior Problems
a. Peds
Patients have been too often accused of not fitting in and as a result behaving
badly.
6.
Pediatric
Kidney Patients Frequently Have Eating, Diet & Nutrition Issues
a. The
big issue here is the failure to follow treatment regimens. This includes everything from adhering to a
renal diet, taking medication, taking/showing up for dialysis, & adhering
to a post-transplant medication schedule.
7.
Pediatric
Kidney Patients Have Learning Problems and Social Difficulties At School
a. The
buildup of wastes in the body slow nerve and brain functions, inhibiting
learning and making social interactions difficult. This
in turn leads Peds Patients to:
i.
Trouble concentrating
ii.
Delayed language skills development---more
slowly than their peers
iii.
Delayed motor skills development
8. The Ongoing Conflict Between Schools,
Parents and the Medical Needs of the Pediatric Patient
a. Pediatric
Patients and their parents have constant issues concerning attending school as
a result of illness and checkups in the form of numerous medical appointments
and taking dialysis. For example, in
center hemo dialysis is 3 times a week for 4 hours at a time. This does not include the time that it takes
to hook up to the dialysis machine or to “hold” afterwards to stop the bleeding
because of needles necessary to connect you to the dialysis machine.
b. Pediatric
Kidney Patients and prohibited and/or limited in participating in school/extracurricular
activities. This limits their ability to
socialize and fit in with their peers.
c. There
is a constant tension between the potential threats to expel, suspend or hold
back the student patient as opposed to the responsibility to adjust and make
reasonable accommodations under the Americans Disability Act.
d. Individuals
w/Disabilities Education Act is a four-part piece of legislation that ensures
students with a disability are provided with Free Appropriate Public Education
that is tailored to their individual needs.
Does the instruction specifically designed to assist the student affect
the absences issue? The rescinded issues
here are still under study for their impact.
e. These
challenges increase when CKD becomes ESRD.
f. Most
children with CKD who receive appropriate treatment can attend school, graduate
from high school or go to
college/vocational school if their families recognize the need for
additional guidance and understanding.
9. Pediatric Kidney Patients Preparing
to Entering The Workforce
a. Peds must overcome many barriers to obtain
and prepare them find a job. They have to overcome such issues as their
mall stature and appearance. It is difficult to find employers that understand
kidney problems and the necessity for reasonable accommodations.
10. Unusual Problems For The Child ESRD Patient Lead To Unique Solutions
But at Great Expense to the Parents
a. Experts have suggested
the following type of experts to help resolve the above issues. The problem here is the expense and who picks
up the costs. Those experts include:
i.
Social Workers that help by finding:
o
Support Groups In The Community
o
Helping A Kidney Kid Rejoin School
Activities
o
Reducing The Stress Of Caring For A Child
W/A Chronic Illness
o
Help W/Applications For Medicare &
Medicaid
o
Mental Health Professional
o
Financial Counselor
o
Dietitian
THE
MOMS (PARENTS AND CARETAKERS)
There
is a marked difference between what the Experts Feel is important and the
concerns of the “Moms” group. I have
written these in ascending order to emphasis the impact of my conclusion.
12. Inconvenient Lab Times
Labs
for the children are frequently taken at inconvenient times without considering
the special needs of the child patient/mom.
This was characterized as “not a family centered experience.”
11.
The Equipment is not retrofitted
for children
The
equipment that is used for basic vital testing or dialysis is not properly
fitted for children. The equipment is
specifically manufactured and fitted for adult patients, and caretakers for
children are forced to adapt. Machines like blood pressure machines, dialysis
machines, dialysis chairs do not fit the children. The remark made to me was “practically
everything is made in adult size.”
10.
Research on Issues Involving
Pediatric Kidney Patients has been Characterized by Parents as Poor
According
to the Moms, there is very poor long-term research on children with kidney
disease.
9.
Drug Protocols Are Not Explained
In A Clear Fashion
The
caretakers for children have complained about the clarity of drug protocols,
for example, steroids or no steroids?
8.
Some Physicians Will Not Accept
Medicare/Medicaid Payments
With
Pediatric Kidney Patients, Medicare is not accepted by docs, forcing parents to
have multiple health insurance policies on the child.
7. There Is Poor Mental Health
Support for Pediatric Kidney Patients
Peds
patients have mental health issues. There is poor psychological/psychiatric
support for ESRD children. Statement
made to me, “… for [a] group that doesn’t eat or urinate, [spends]extended
periods of time in hospital [and] is missing school and social interaction,”
there is surprisingly little support for these children.
6. The Normal Precautions for Adult Peritoneal Kidney Patients Are
Frequently Disregarded for Juvenile Dialysis Patients During Training
There
are poor training standards and care for young PD patients in the
hospital. “Doing dialysis in an open
room vs a private room with many other pediatric patients with unmasked
provider is recipe for peritonitis.”
There are no single care providers for connections and disconnections.
5.
Travel to Pediatric Dialysis
Centers Is Ridiculous
Dialysis
centers for children are not as readily available as adult centers,
particularly in rural areas. It is
difficult to travel to pediatric dialysis centers. For example, in Indiana there is only 1
pediatric center, Riley’s Hospital For
Children in Indianapolis. This is a 144
mile/ 2 ½ hour drive one way from Northwest Indiana where I live. Some children are helicoptered down. For many
children, most dialysis centers are only
available in major cities or children’s hospitals.
4. There is Very Poor Support for
Feeding Skills and Nutrition is Approached in a ‘One-Size Fits All’ Method
The
Moms teach us that there is poor support for feeding skills and nutrition for
Pediatric Kidney Patients. The needs of
the individual kids are frequently not addressed. Nutrition instead is approached as a
one-size-fits all, when individual
training and treatment is needed. There
should be a balance of enough protein to stimulate growth, while protecting the
kidneys
3. Most Pediatric Patients are Tube Fed
Feeding
therapy is pretty much a done deal as a result of poor support. The majority of
renal kids are tube fed to keep up with high intake necessary to support them &
for the intake of meds.
2. There are no Pre-Set Appointments Like in Adult Dialysis
According
to the Moms, there are no preset appointments without multiple choices. Makes it very difficult to plan.
1. The Moms Feel There are Too Few Support Groups and They Have Requested
a Major Kidney Advocacy Group, Like the NKF, Undertake An Initiative To
Represent Their Children
The
Moms complain that their children are not adequately represented. There are too few pediatric support
groups. The Moms feel that a major
national group like the NKF or AAKP take an Initiative to help these children.
CONCLUSION
It
is interesting to review this matter for Pediatric Kidney Patients. As Kidney
Patients, they are truly an overlooked or neglected group. This results in problems that may follow them
out of childhood and into adulthood. This
can be a life sentence for merely becoming a Kidney Patient at a young age. It
is too great a price to pay for a circumstance largely out of their
control. And with all their issues, what
is it that they ask for? They ask only
to be represented; for advocates. If we
truly represent all kidney patients, how can we overlook the Ambassadors of our
future?
