Steady as she Goes

No news is good news, right?  This summer has been pretty uneventful for her.  The Tacrolimus appears to be doing it's job.  The hardest part is making sure she takes her medicine every day.  Her last relapse was because she became lax at taking her meds.

As a child she was really diligent about taking her meds, so I - wrongly - assumed she would be even better as a teen.  But alas, she seems to have lost some of the interest in taking care of her own medical needs.  The doctor said kids can be pretty good at being on top of things, but teens usually are terrible at being responsible for their own care, and that responsibility does not seem to return until around the age of 24.

We are trying to help her by putting signs up in the kitchen and bathrooms to remind her, and using a pill minder so that when we ask if she took her medicine she can't get away with just saying, "I think so."

She's a good kid, I guess it's just hard to have to be responsible all the time for something you wish you didn't have to worry about.

Valentine's relapse

Feb relapse

Good Morning Miss Stay-Puff, looks like you've relapsed again.

I can't believe I have neglected posting updates.  Here is a quick run-down.  Summer went great, School is going well, she continues to be a happy, cheerful girl.  She is excited because having a reprieve from prednisone has given her a chance to grow - now claiming a full 5 feet - Yay!

Miracles happen: Her medication (tacrolimus) was re-classified as preventative, which means it is covered in full by the insurance, pre-deductible.

Dec Pre-relapse

November, doing well so the Dr reduced her tacro because she had made it almost a full year without a relapse.  Guess we may have been a bit premature though, because at the end of December she started spilling protein again.  Called the clinic and she was put on the prednisone relapse protocol.

Unfortunately, right after completely weening off prednisone, she started spilling protein again, so she's right back on prednisone.  We'll visit the Dr in March and re-evaluate if her tacro needs to be raised, or it there are new triggers to consider.  Both relapses coincided with her menstral cycle (a new factor).  Triggers or coincidental coincidance?

Have a Happy New Year!