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Ask The
Doctor...
Susan Parsons MD, a pediatric transplant physician at Dana
Farber Cancer Institute in Boston MA, has been studying pediatric transplant
survivors and their families since 1986. She shared some insights, gained from
her research, with Blood & Marrow Transplant Newsletter:
Newsletter: What issues do children raise most often about
their transplant experience?
Parsons: In our research, we’ve looked at some long
term physical side effects of transplant as well as how children perceive their
quality of life. The issues critical to children differ dramatically depending
on their age at transplant, their age at the time they are interviewed, and the
number of months since transplant.
For example, children who undergo transplant during their teenage
years find the isolation from their friends and dependence on
“hovering” parents during the recovery period very difficult to
handle. Younger children, on the other hand, expect and want a parent to hover
when they are ill.
Newsletter: What sort of long-term physical problems do
survivors of pediatric transplant report?
Parsons: The most common are pulmonary (lung) problems,
growth problems, delayed puberty, and one that pushes many kids over the
edge—dental/facial problems.
Newsletter: Do the pulmonary problems interfere with
children’s ability to be physically active?
Parsons: We see long-term pulmonary problems in 30 to 40
percent of our pediatric survivors, but many are able to adapt their lifestyle
so that they can participate in aerobic activities.
In the past, we used to pull children out of physical education
programs if they had pulmonary problems. Now we realize that it’s
important for the child to remain in the program and do at least some level of
aerobic activity. We work with schools so they have a realistic idea of what
the child can achieve.
Newsletter: We receive many calls from parents whose
children are not growing at a normal rate after transplant. How common is this
problem?
Parsons: Most survivors of pediatric bone marrow or stem
cell transplants experience some degree of growth delay. This is a big issue
for children as they reach puberty.
If the child is transplanted after going through puberty,
there’s no change in growth. Those most vulnerable appear to be children
who are just about to go through puberty when they are transplanted—those
in the 9- to 11-year old range.
It takes close collaboration between transplanters and specialists
to address this problem. Sometimes growth hormones can help. Another strategy
is to delay the onset of puberty with lupron, which enables some children to
grow a few more inches.
Newsletter: What sort of dental/facial problems do
pediatric transplant survivors experience?
Parsons: Children who are transplanted when they are less
than 5 years of age usually have markedly abnormal teeth. The medical
literature suggests that this is associated with radiation therapy, but
I’ve seen the same problem in children who were treated with busulfan and
various combinations of chemotherapy drugs.
The children experience a high level of tooth decay and are
sometimes missing secondary teeth after they lose their baby teeth. Teeth fall
out and braces may not stay on because the roots of the teeth are too
short.
Dentists often don’t understand that radiation and
chemotherapy at an early age can impact the growth of teeth, and consequently
don’t give the appropriate care. We’re working with the American
Dental Association to educate dentists about the special needs of these
children.
Newsletter: Overall, how do the survivors of pediatric
transplant that you’ve interviewed view their quality of life?
Parsons: It depends on whether or not they are experiencing
complications such as chronic graft-versus-host disease, and whether the
disease has recurred.
Children’s perceptions on how well they are doing correlate
highly with physicians’ reports about their status. Most of the 150
survivors we studied thought they were doing better in all areas than their
parents did. Parents’ perceptions of how well the child was doing depended
heavily on how well the parents felt they, themselves, were doing. |
