Our son, Austin, has Primary Intestinal Lymphangiectasia. He was born July 6, 2001
weighing 9 pounds and 11 ounces. When he was born, he was very swollen and
doctors were unsure of what was wrong with him. All of the signs for a child with PIL
were present at birth. Weeks after his birth, we saw several doctors and they all said
he was normal. After several months of taking him to the doctor without any
answers the next set of symptoms began to appear. At four months, his right leg
began to swell and he began to have breathing issues. At this time, we changed
pediatricians, the new pediatrician sent us to a GI specialist who began a series of
test or studies and biopsies. He was tested for Cystic Fibrosis and several blood
disorders. They all came back negative. He got a virus around 7 months of age
and at that time the doctors realized his albumin levels were low. His levels range
from 1.7 to 1.9. That is when he was first admitted to the hospital and we began
getting albumin. He was unable to tolerate his food or milk of which he threw up
daily, had diarrhea daily, and was always sick. He began to get admitted to the
hospital almost weekly because of the swelling in his body. His belly and leg would
stay swollen. At the age of 3 his other leg began to swell. Now his left leg stays
swollen instead of his right leg. Until the age of around 3 he got his treatments in
the hospital only. At that time, we began to get treatments twice a week by a Home
Health Agency . We now get a treatment at home once a week and every 4-6
weeks we get an extra treatment. We live about an hour and half away from his
doctors and the hospital, so getting treatments at home has made his life easier.
We do not have to go to the hospital as much anymore but we still go to the hospital some. In October of 2008, Austin has
a capsule endoscopy study and it revealed that he does have PIL. It covers two thirds of his small intestine and it revealed
that it is a severe case. It was a long wait for a diagnosis.
In 2009 we tried lymphandema therapy for about 8 months. The swelling in his left leg did reduce by about 70% and his
right leg reduce by 90% but as a result of the therapy he began to have upper body and facial swelling. We discontinued
the treatment. Support garments have helped some but he is unable to wear them on a regular basis.
Austin is currently 11 years old and in the 6th grade and does very well in school. His favorite sports are basketball,
football, swimming, playing video and he likes hanging out with his friends. He participates in church league basketball and
performs in church dramas and plays. He has a strong faith in god. He has a 16 year old sister, Anna, who he loves to play
with. He is very brave and stays positive about his condition. He loves life and tries to live each day to its fullest and his is
amazing beyond the words I could use to describe him.
His health seems to change from day to day. Just when we think we understand his condition we have a new issue to
arise. I know that since we started out on this journey with Austin there been a lot of new medical discoveries. We are
praying that the next discovery will be a cure for PIL.