“It was a dark and stormy night…” well, not really, but on
January 16 Juliette woke up with a rash.
That’s still pretty dreary! A
round of viral rashes were going around the community, so assuming it would run
its course, I didn’t worry too much. Not
wanting to receive the “worst mother of the year award,” I took her in to the
doctor after she had it for a week. She
had small bumps all over her body and she would scratch at it until she bled,
but absolutely no other symptoms. We
were giving her Benadryl and got a script for some steroid cream to rub all
over her. That wasn’t helping, so we put
the cream on and then covered her arms and legs with wet socks. The wet press was to make the steroid a bit
of a stronger dose. Over the course of
the weeks from when the rash began until we started doing the wet compress, she
would scratch continuously causing her to wake up every night with her sheets
covered in blood and because she comes in to our room in the middle of every
night, our sheets were bloody too. I
have never done so much laundry in my life!
She would still be itchy, but because her arms and legs were covered,
she couldn’t actually scratch her skin.
Poor kid!
So, the Benadryl didn’t work, the steroid cream didn’t work,
another allergy medicine didn’t really work, and so she was started on a round
of steroids. It was a low dosage and
only for about a week, and it helped!
The rash didn’t completely go away, but was no longer overtaking her
body. The week of steroids was up, and
her rash came back with a vengeance.
Especially on her face and arms.
Now what?!
Thankfully she has a great doctor here who has been
providing excellent care and has also been consulting with various
specialists. In the meantime, she was
put back on steroids along with a new “itchy medicine” to help keep her
comfortable while we continued to navigate through to a diagnosis. A biopsy was taken of a bump on her back, we
had a visit with an Italian dermatologist, she has had all kinds of blood work
screenings, including allergies and a celiac panel, along with various other
tests and screenings. The biopsy did not
reveal a clear answer and the only abnormal lab result revealed she had a high
ANA level. ANA stands for Anti Nuclear
Antibody and while there are very clear and eloquent explanations of what these
protein do, I’m not qualified to provide said eloquent explanation. Basically, the test indicated that her body
is producing antibodies that are not only fighting viruses and bacteria but are
also attacking healthy tissue. Mostly,
the result from a high ANA level causes some concern she could have an auto-immune
disease. She had more blood drawn about
a week ago to send for testing to determine if she has lupus. We also sprayed her with DEET for a week, just in case she was getting bit by bugs. The bug theory has done serious damage to my soul. She has been weaned off of the steroid, which
is good because she was beginning to eat…and eat… and eat, and now she is on an
antibiotic. Did you catch all of
that? So at this moment we are just
waiting. Waiting for test results,
waiting for the antibiotic to potentially clear up whatever is going on, and
waiting for something to give.
Who knew a rash could be so mysterious and complicated! Things could certainly be much worse and she is actually beginning to look better. I am
realizing that I need to start trying to look at the bigger picture. There are always lessons to learn and God’s
glory to shine through. I was so wisely
told that the situation is not out of control… out of our control, perhaps, but
not out of God’s. So, here we go, facing
another week and just keeping the faith!
