Thanks so much, it's just great to find a place where everyone talks openly about it. Doctors can tell me what they think, but people with it can share really what's going on. Yes, she is very young from what I understand. We had taken her to Disney last April and she had this awful rash when she came home. We never thought too much about it until it grew and grew and wouldn't go away. Someone had suggested to me that maybe she had lupus because they said it looked like the traditional butterfly rash. The dermatologist in our area was having a hard time diagnosing it. I did some research and had suggested lupus, to which I was immediately treated like I was stupid for even thinking that - he said kids that young don't have lupus.
Well, after several creams and medications he finally decided on a biopsy and blood work, at which point he discovered that it was lupus. He was so upset that he had dismissed it and immediately sent me to NYC Columbia University Pediatric Rheumatology and had her looked at. We see Dr. Eichenfield and he is AMAZING! She was put on Plaquenil - 200 mg per day 5 times a week. She wears Neutrogena spf 70 and always has a bucket hat. The school has been great putting the sunscreen on her each day three times a day, before she goes to recess, lunch and goes home. There is another kid in her class that has to go to the nurse every day that has pediatric diabetes so they go together. It's kind of cute that they enjoy going together, being their in kindergarten and so young, but to be dealing dealing with such adult diseases is so sad.
Luckily she has not one other symptom of lupus at this time. She did break out all over her chest one other time since her initial butterfly rash, but it went away in about a week. Otherwise, she's energetic and doesn't seem to be overly sun sensitive at this time. She can spend an hour or so as long as she's very protected.
My worry is what the future holds. Nobody seems to know what she will face because she is so young. I can't even really find anyone that has a child so young with lupus. Even the best doctors can't seem to tell me her chances of eventually having systemic or discoid....it's all very nerve racking. Right now though, we're just taking each day as it comes and doing our best.
Thanks again, just finding this site is a little more comforting that we're not alone...