Sunday, July 13, 2008
Mielle was diagnosed on Halloween of 2007, and here is the email I sent out a couple of weeks later to let people know. It's kind of hard to read it now - the original rheumatologist we saw painted quite a rosy picture, and we were more than willing to believe his version of the story. Unfortunately, things have not been as simple as he lead us to believe. Here's the email:
Hello, dear friends -
We have some news about Mielle's health that we want to share with her close friends.
She is okay!! But she's had a weird rash on her face for months, and although we took her to a few different docs, none could explain what it was. Then about three weeks ago she began complaining of pain and weakness in her legs. I had been pretty mellow about the rash, but when the leg pains began I got really freaked out and feared it could be lupus (which exists in my family). Once we recognized that she was having the pain and weakness in her legs, it seemed to progress quickly. Within days, she couldn't climb up stairs without pulling herself up with the rail; she can't get up or down on the floor unless there is a piece of furniture she can use to lean against; she can't do a sit-up; she can't walk more than a couple blocks without getting fatigued.
To make a long story short, we were referred to a pediatric rheumatologist at Children's Hospital in Oakland and he was able to take one look at her and diagnose her with a disease called juvenile dermatomyositis.
Basically, it's inflammation of the skin and muscles, exact cause unknown, but believed to be related to genetic predisposition and some kind of trigger that sets it off - environmental, sunlight, food, immunizations... who knows? It is not contagious in any way. She has a textbook case.
Here is a link to a good info page on the disease:
So, the good (GREAT) news is that we know what it is, and although it's serious, it's also manageable. More good news was that she could begin treatment at home, and didn't have to go into the hospital for 2-4 days of i.v. medication.
The bad news is that she has to take prednisone (a super powerful steroid) for at least three months, perhaps longer. She should start to feel some improvement in a couple of weeks, and be back to full or nearly-full strength in 2-3 months. After that, she will need to continue treatment for quite some time (2-3 YEARS) but hopefully with less intense meds as time goes on. If all goes well, she will eventually be medication-free and in remission, but it is one of those things that never completely goes away so there is the chance it could recur. However, the rheumatologist was very optimistic that it could be almost-cured.
This disease is very, very rare (only 3 kids out of a million get it every year, can you believe that??) and the more I think about it, the more I think we are unbelievably lucky to have found a doctor who could immediately recognize it, and has a lot of experience treating it (over 100 kids). Thank God for Children's Hospital! It's the type of thing that can easily be misdiagnosed (often for lupus) and treated incorrectly, or simply not recognized by the treating doctor, resulting in months of testing, etc HELL. So we are incredibly grateful to have dodged all of that, and to have her started on the necessary treatment.
We will also be taking Mielle to see Sally Savitz, our wonderful homeopath/acupuncturist - a miracle worker if there ever was one. I know that Sally's treatment will help Mielle deal with the disease as well as the medications she needs to take. I feel very blessed to have Sally working with us.
Mielle is in pretty good spirits most of the time, although she is frustrated that she can't run and play at recess and she does get tired and grumpy very easily (but hey, nothing new about that!!) So far the prednisone has been having some noticeable effects on her mood, causing her to be (at times) irritable, hyper, and prone to mood swings. Hopefully that will decrease as her body adjusts to the medication. We have taken her out of the after-school-care program she was in, so that she can come straight home and eat, rest, etc in the afternoon. The rheumatologist suggested pulling her out of school for a couple of weeks, but we really didn't want to, and neither did she, and so far she seems to be doing fine with it. Obviously, we've alerted her teacher, etc. so they all know what she can and can't do right now.
So... I think that's it. It's been pretty rough and very scary, but it's getting better. It's actually a LOT better this week than it was last week, when we didn't know what it was and when we first got the news. It sucks that this has happened to her, but there are so many ways that it could have been so much worse, so we're doing out best to look at things from that angle. We appreciate all the good vibes you can send our way.