It's Not Fair.

We thought it was a stubborn yeast infection, but then 12 days of Diflucan didn't cure it. Then tests were run, and we found that there was no yeast present. How I wish it were yeast. Yeast is easy. Natural remedies and prescription drugs for yeast are plentiful.
There's no cure for Lichen Sclerosus. It's chronic. It's not contagious, and no one knows what causes it. It's been linked with autoimmune diseases, but is not technically in that class on it's own. It causes not only the common symptoms associated with yeast infections, but also thinning of the skin, which causes fissures, which then lead to scarring.
In the short term, this means several weeks of strong steroid cream daily to suppress it. Then those meds will be used regularly, but less often, to keep the symptoms away . She'll have the condition for at least several years. It's said to often go away after puberty. Something about the hormones. I was okay with that, until I read that it's about 85% likely. That's not nearly likely enough for me. A 15% chance that she'll instead have it for her entire life just isn't an acceptable statistic to me, the mother of a five year old with LS.
In the long term, regardless of whether she "outgrows it" during puberty, she'll have to be monitored more closely for skin cancer for life. They don't know for sure if pediatric cases are at higher risk for squamous cell carcinoma, but adult cases are, so we'll have to keep a watch on her skin just in case.
And I know there is some scarring already, but I don't know how much, but the severity will determine whether she'll ever be able to have a normal sex life. Right now if I had to guess, I'd say she's not severe yet. If the scarring is not yet significant, and the treatment keeps the condition under control, that shouldn't be a problem.

Technically speaking, the prognosis is good. I've read that over and over. I want to believe it, I really do. But that 15% keeps popping in my head, and I can't help but to worry about what happens if she's in that 15%, or if it's already progressed enough that it'll cause life-long problems regardless.
It's not fair. Why does my five year old have a chronic disease? And if she's got to have one, why can't it affect her pinky toe? I feel so sorry for her, and am afraid to think about the future too much, if she's not one of the luckier ones.

When I first read about it, I wasn't too concerned. I thought, "oh, like yeast but we treat with steroids instead of diflucan. Okay!" But it really is nothing like that at all. It just has similar symptoms.

So please, please pray for Mikayla. I want to dream big and ask everyone to pray for total healing, but I'm too afraid to get my hopes up. At the very least, I want the medicine to ease the suffering, and I want to be able to stop freaking out about it. I want the tightness in my chest and the lump in my throat to go away. I want to be able to focus on that 85% instead of the 15%. But mostly, I just want her to be okay.

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I need to piggyback something on here. I just realized that I never mentioned something else very big. Rewind for a moment to early December. Xander finally got his tests done, and he does, in fact, have kidney reflux. The lefty is about 2/3 the size of righty, and the reflux in the left ureter is a grade 4. The scale is 1-5, 5 is the worst. He's currently on antibiotics indefinitely, but I plan to go back in to request surgery instead. The testing was not fun, but not as horrific as we'd imagined. We'll go through it again in the fall before we leave for Germany.
I was just adding labels to some entries, and noticed that I skipped right over that, and went straight to talking about him needing a urologist in Germany. Well, that's why.

Also, Aaric has an appointment later this week with our doctor to discuss getting him checked out for ADD or SPD or anything else that could be causing his problems. I also go to my first therapy session, to see if we can teach my brain how to cope with ADD better. I'd prefer to stay drug-free if possible.

And totally not what's important right now, but for the record, this means that we've got to submit even more paperwork to our good friends in the Army, because Mikayla requires special medical care, and Aaric might too.