Saturday, March 29, 2008

Lab Results

We recived the lab results. Her ANA (anit-nuclear AB) was positive, speckled 1:320. Her CK was within normal range. Every other test was negative.

The skin biopsy will take longer to get in...wait..wait....wait.

Friday, March 28, 2008

March 28, 2008 - the diagnosis

After going through what we thought was poison ivy on her cheeks (treated twice w/ prednisone) we decided to go to a dermatologist in town. This doctor looked at Madeline and said, "I think your daughter has Lupus". I thought he was nuts...she had no signs of Lupus, she had a rash. He then decided to give us cream for eczema and off we went.

After a month of continuous, religious use of the creams, the rash only got worse. It was now spreading to her hands and chest. I just knew she was allergic to something in the house so I bought new detergent, new pillows, new mild soap/shampoo - no difference.

My mother-in-law shared w/ me a doctor in Baton Rouge that she sees for dermatology issues. She was concerned about the rash, actually more concerned than Madeline's dad and I. So we made an appointment...which was on March 28, 2008.

Dr. B came into the office and within two minutes I could tell from his questions and face something was not right. I told so many of my friends it was like we were in slow motion. Rick and I just looked at each other and realized at the same time...something is wrong. Dr. B began to bring other doctors into the room, I guess to agree with his diagnosis. Little did we know her diagnosis would be so rare. He and the other doctors began asking her questions about how she was feeling, is she sore, tired, etc. I was thinking where are they going with this. We then had blood taken from her (which she handled better than I would of ever thought; this was her first time) and them a skin biopsy. She got her first stitch which she was very excited about - go figure.

Dr. B then asked the kids to go outside so we could have grown up talk. I thought I was going to throw up. He wrote on a prescription pad the words juvenile dermatomyositis. It was foreign language to us. He said, "I believe your daughter has juvenile dermatomoyosis and she may need some methotraxate." I knew that was a chemotherapy drug and knew this was not good. He also told her we need too see a pediatric rheumatologist as soon as possible. Of course, he told us not to look on the Internet for it would worry us (that didn't last long, we looked, it was terrible, and we felt terrible).

Thank God this doctor knew what she had. We are so BLESSED that after only five months of the rash we found someone who knew what this was and realized the importance of quick and early treatment.

March 28, 2008 was the worst day, but in some senses a lucky day. A lucky day that Dr. B (thanks Grammy) possibly saved our baby girl from more illness than necessary.

New Years Eve 2007

New Years Eve 2007
Her rash on New Year Eve 2007. We were treating at this time as poison ivy.

Madeline, January 2008

Madeline, January 2008
Here is a picture of Madeline (2008) at her classroom birthday party. Here you will notice her malar rash and grottron's papules on her hands. Of course at this time we had no idea what was going on.

Madeline, January 2009

Madeline, January 2009
Here is a picture of Madeline at her 9th birthday party. The only redness you see now is the nornal redness from running around at your birthday party. My, what a difference a year makes.