Hello, everyone. This is another brave family who is fighting with
PIL from China. My dear nephew Ningning was born on 25th
May, 2009. For the first two years, all of my family members have
experienced a wonderful time, seeing him grow up. He is always
a good boy, cute and like smiling.
Something we could never imagine happened last summer. At
first, angioma was found on his neck. He was sent to the local
hospital for further inspection, more bad news came. The doctor
found his albumin levels were extremely low, and he got swollen
in his body. His belly, face and legs would stay swollen, but the
doctors couldn’t figure out what happen to him. We took him to
the capital city, trying to find out the reason. But after several
months, none of the doctors could give us a good explanation,
but they found infusion of albumin would be good for him. Since
my sister is a nurse, we took him home and gave him infusions
when the symptoms came.
Early this year, his situation became worse and we finally had no idea how to deal with. Fortunately, we got contact with
another famous doctor in China who has published some papers in children’s IL. After several inspections, she named the
sickness PIL. The teacher told us there was no special treatment for the disease currently, at least in China. Albumin,
diuretics and a healthier diet would keep him grow.
We have been doing as the teacher told, but the problem is, he has been keeping the same weight and height for almost
one year, and hard to grow up? I would like to know how the other families deal with this. Beside this, he is always so weak
and wearing a swollen tummy, which makes him hard to go out and play with other kids. We do know that it’s not good to
keep him at home all the time, but how to manage it?
Thank you in advance for all the sharing information and for the nice website gathering us together.
All the good luck to the lovely and brave kids, and our beloved family members.
My email address: firstname.lastname@example.org