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In previous newsletters, Dr. Bergmann has stated
his need for patients with deficiencies of fatty acid metabolism
to participate in a PET Scan study at Columbia University, New York
City. My son, Adam, participated in this study in May of 1998 and
our family wants to act as a spokesman for this very necessary study.
The study involves analyzing the process of fat metabolism in the
hearts of children with defects of fatty acid oxidation. Hopefully
this study will provide some answers as to why children with these
defects so often die of Cardiomyopathy. It is very difficult for
Dr. Daphne Hsu and Dr. Steven Bergmann to get participants in their
study probably because most children who frequently have to experience
evasive procedures and hospitalizations aren't willing to voluntarily
participate in yet another medical procedure. My son may be an exception
but most medical procedures that even to some adults are trying
are 'no big deal' to him. Maybe this is because he has gone through
so many since his diagnosis of LCHAD at 5 months or it's just his
personality. We are very grateful to his relaxed attitude because
it has actually eased the stress for him and his family when he
is hospitalized or needs to have one of his many necessary tests.
For Adam the PET Scan was really a simple test and
Dr. Bergmann was wonderful in bringing us in the day before to explain
the procedure and let Adam 'play' with the equipment. Basically
all that must be done is an IV administered with a very low radioactive
solution (the same as one would be exposed to from a year of background
radioactivity) and then the patient lays in a tube like machine
(looking much like an MRI) while the metabolism is studied, for
about 1 hour. Dr. Bergmann was great at administedng the IV - one
try right in, and Adam fell asleep through the test. All he commented
on is that his back became sweaty. Maybe they could put a blanket
(one of those hospital thermal ones) underneath the patient so it
would be more comfortable.
Benefits to you!
We stayed several days at Columbia University's expense at the beautiful
Ronald McDonald House in New York City visiting such sites interesting
to 7-year-old Adam as the Statue of Liberty, top of the World Trade
Center, Central Park, the Natural History Museum, riding subways
and taxis and of course the plane ride there. Actually, this turned
out to be one of our favorite vacations and Columbia University
was very kind to cover most of the expenses such as airfare, transportation,
accommodations and some meals.
It isn't often that because you have a rare, hard-to-manage,
sometimes-life-threatening, inherited disease that you are rewarded.
But this is a reward AND you are helping science! Any questions
about the test from a parent's point of view you can write us.
Don and Valerie Fulton
vallchadmom@yahoo.com
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