I realize that it is really confusing to try and figure out what has actually happened in the last year (and even before that) by looking at the past posts, so I had the idea to break it down with a timeline of events:
Mielle starts having super flushed cheeks all the time.
She sees a pediatric dermatologist, who say's it's probably Fifth's Disease (also called "slap-cheek" disease"), despite the fact that Fifth's usually only lasts a week or so. He said to come back if it doesn't clear up in 8 weeks.
8 weeks later, and it had cleared up. Sort of. Mostly. At least, it wasn't the same, so we THOUGHT it had cleared up. Basically, for several months, the redness would come and go and in different spots, and it was worse after being out in the sun. We really didn't connect it to the earlier condition; we didn't realize it was an ongoing thing. We thought it was just a weird reaction to the sun. We had NO IDEA that it could be something serious (can you sense the defensiveness? It is hard to look back on these events; it's hard not to blame ourselves).
I was sufficiently concerned about the skin stuff to take Mielle to see my own dermatologist. She gave us a topical steroid cream and instructed us to come back in three weeks if it didn't help, at which time she would do blood tests for lupus.
Early October 2007
The steroid cream did nothing, but in the meantime the muscle involvement began, and this changed everything. By about the third week of October, it was obvious that something was wrong - Mielle was exhausted, wouldn't walk far, had trouble with stairs, and eventually just refused to climb them. I took her for a same-day appt at her pediatrician, who ran the lupus blood tests. They were negative. We were referred to a pediatric rheumatologist at Children's Hospital Oakland.
October 31, 2007
Mielle's appt with the rheumatologist, and her diagnosis of juvenile dermatomyositis. We were actually surprised to get a definitive diagnosis at that appointment; we thought we would be in testing hell for a while before finding the cause. Mielle begins that night with the oral steroid, prednisone, as well as oral methotrexate. We were relieved that her doctor didn't feel her disease was severe enough to warrant intravenous steroid treatment or methotrexate by injection. She was just taking it orally.
Nov 2007 - Feb 2008
It was a pretty horrible winter, with Mielle suffering the effects of the disease and then the meds. The steroid made her unbearably, explosively moody and full of rage. Incredibly difficult to deal with. She started putting on weight and experiencing brutal headaches and nausea. By about December, though, her strength and energy was really showing improvement - the meds were working. Under dr. advice (of course), we began tapering the oral steroid and presumed the methotrexate (which takes 8 weeks or so to begin working) would do the job of controlling the disease.
By the end of the month, it was clear that the muscle pain and weakness was back. We were spinning. We had lost confidence in her doctor at Children's, but we didn't know where to take her. UCSF? Stanford? A highly-touted specialist in Chicago, or one in Boston, or one in DC? Mass confusion, anger at the first rheumatologist, mass guilt that that we didn't get a second opinion at the outset, just a horrible time. This is also when Lucien's delays were emerging. The next few months would be some of our darkest.
Through a sort of random series of events, we end up taking Mielle to Stanford, where she began intravenous steroid treatments (which means she was hooked up to an IV and began receiving the steroid directly into her vein) and we increased her methotrexte, and switched to weekly injections (which is more effective). She stayed on the oral steroid as well. The first intravenous steroid "session" was every day for three days; each treatment took about 4-5 hours total. After the inital set of three treatments, she received them one time every two weeks for a couple of months. I also made an appointment for her with the specialist in Chicago; at this point, my faith was shaken and I felt I wouldn't be satisfied until that doc saw her.
The intravenous steroids had helped bring things back under control, but she seemed to have plateau-ed. Some kids are "refractory" which basically means that conventional treatments don't work and you just have to keep trying other drugs, more and more experimental things. It was looking like Mielle would be in this group. We decided the next step would be an intravenous drug called IVIG, which is somehow derived from donated blood. Lucien, for his part, had his bones x-rayed to rule out certain genetic abnormalities, and his x-rays were normal.
Miraculously, or at least it seemed that way, she started to improve. My theory is that the methotrexate by injection was finally kicking in, after about 10 weeks.... so, hallelujah, it was working after all. We decided to hold off on the IVIG and also to wait til after the Chicago trip to make any big changes to the treatment. In other news, Lucien had an MRI of his brain, which showed some abnormalities, but did not point to a definitive diagnosis and was not definitively determined to be the cause of his delays. After slogging through all the assessments and red tape, he finally really began with services through Regional Center.
Our first appt in Chicago, which showed encouraging results about the level of Mielle's disease activity - not as active as we feared it might be.
Present (October 2008)
Continuing on current course, methotrexate injections 1x/week, still on the oral prednisone but slowly, slowly tapering. Mielle's energy and strength seem pretty darn good. Her skin is ok; rash is still present but it's not extreme. She continues with regular appointments at Stanford and will have another appt in Chicago in early December.
We are coming up on a year since Mielle's diagnosis, and I'm surprised at how emotional I feel about it. It's been a year that turned our world upside down and inside out. There were times I felt trapped in a nightmare, and other times I felt like I was living in some kind of alternate reality.
But we are, of course, grateful that both kids seem to be on the right track now. We do our best to just take things day by day, and hope that it continues.
Thanks for all the love and support from our friends and family; we never would have made it this far without you. I sincerely hope that the worst is behind us for both kids (and that there isn't some other crisis looming), but one thing we've learned is that you just never know what is around the corner!