My daughter was diagnosed with linear scleroderma with morphea in October 2006. She was six years old. I noticed that she had what appeared to be a bruise on the back of her left thigh. That was in June of 2006.
During the summer it never got better and then in late September-early October of that year I noticed that it had gotten significantly bigger in just a couple week's time. It had developed from just a quarter sized area to encompassing the entire back of her thigh. It extended from the bottom of her buttock to about two inches below her knee. I also noticed the white patches and the fact that this area was hard. The whole area except for the white patches was a dark purplish red.
I took her to see her regular pediatrician who recommended that she see a dermatologist soon. She had already had a dermatologist from when she was younger, when she had small pimple-like areas on her buttocks that were treated with medication. That had gone away quickly and never occurred again.
So I made an appointment with the dermatologist and she was able to see her very quickly. Almost the minute that the doctor walked into the room she knew what it was. The first words out of her mouth were, "That's linear morphea." My husband and I were speechless. We had already had several major medical happenings that year, it was like "what's next?"
Just to let you know the stress level that had already occurred that year. I had to be induced for our third child because of high blood pressure. He was full term. I delivered him vaginally but his shoulders got stuck and he had the umbilical cord wrapped around his neck. When I finally delivered him, he was blue, limp and wasn't breathing. Watching them resuscitate him was something I never ever want to go through again — and to note, I am a Registered Nurse. I worked in the same hospital and the same floor but a different unit. I worked in the Intensive Care Unit for almost ten years, so I knew exactly what was going on and what the risks were. They were successful in resuscitating him. He was then flown to Akron Children's Hospital, which is about two hours away from where we live. My husband went to be with our son, while I stayed in the hospital overnight. I was released the next day. Our son spent five days in NICU; it was not a good experience.
My blood pressure remained high, so high that it wouldn't register on an automatic blood pressure cuff. I was admitted to the hospital the next day for four days. The weekend I came home, my daughter — the one who was diagnosed with linear morphea — had strep throat, and she also had scarlet fever.
When my husband when in for his vasectomy consultation in April 2006 he found out that he had an inguinal hernia. He then had surgery at the end of April. So when my daughter was diagnosed that fall, it was definitely like, "What's next? What else could possibly happen this year?"
The regular dermatologist said she needed to be seen by a pediatric dermatologist right away. An appointment was scheduled for the next week. Medication was started by the regular dermatologist — creams several times a day and prednisone daily. The pediatric dermatologist refined the schedule of creams and adjusted the prednisone schedule. She also made an appointment for her to see a pediatric rheumatologist.
The pediatric rheumatologist added methotrexate weekly. The doctor's appointments were several times a month for several months. These appointments are about one and a half hours away one way. She also had to have blood work drawn monthly. The appointments were gradually spaced out.
In the fall of 2007, her linear morphea was inactive. She was down to every six month appointments and creams just a couple of times a week, off the methotrexate altogether. The area had shrunk to just a medium size area on the back of her thigh.
In the early part of January 2008, she had a regular appointment. The very next week I noticed three new spots on the top of my daughter's left foot and also noticed that the area on the back of her thigh was much bigger, below her knee and up to her buttock again. I immediately made appointments with her doctors again. She saw both the pediatric dermatologist and the pediatric rheumatologist in the same week. They both confirmed that the linear morphea was active again. My daughter is back on creams three times a day, prednisone daily and methotrexate weekly, with blood work monthly and appointments every two months.
Both doctors said that the scleroderma moves very, very quickly in my daughter. She is now eight and is responsible for making sure she does her creams. She has lots of questions but not many answers. She would love to find another child in Ohio that is dealing with the same thing. She feels like she is all alone.
New email address needed 05-01-08 SLE
Old Email Prefix: my.this.n.that.for.you
Story edited 03-22-08 JTD
Story posted 04-04-08 SLE
Story Editor: Judith Thompson Devlin
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