Maybe medication

We're still not on the right track to helping her feel better. The last month has been one of constant pain and fatigue for her. She had her first infusion of Solumedrol by IV with the hopes of ending this continuous flare. That didn't work. She's been on 40 mg. of Prednisone(along with everything else) for a while now and nothing is getting better for her. Then last week her doctor called and suggested that we have a consult to talk about new medication options. He talked to me on the phone a couple of weeks ago about the next level of medication that he thought we needed to try but because of the risky nature of the side effects he asked me to come in so that we could talk face to face.

Her tiredness had increased quite a bit after the Solumedrol infusion. According to the fact sheet they gave me, it should have ramped her up a little bit if anything. Because they drew blood to test it during the IV procedure, I asked about the results when I arrived for the consult thinking that perhaps she was a little anemic. The doctor didn't order the blood test and didn't know it had been done, so he hadn't checked for results. Something was off in her test. Something called Sed rate. Apparently that Sed rate is an indicator of inflammation in your body. Normal for her would be between 0 and 20. Her Sed.rate is 140. The doctor said that she would have to feel horrible with that kind of inflammation in her body. He had suspected that she has vasculitis somewhere, and this confirmed it for him. So we went from thinking she was really sick to knowing she's really sick. It took away any doubts that she needed to be on a new medicine. One that has some scary side effects that I prefer not to think about, but they are there. Her doctor said that in his whole rheumatology practice that he might have ten kids that are sick enough for him to put on Imuran and she's one of them. Having the test results that leave no doubt that she needs this new medication gave me a little peace about it. It's another example of God's hand guiding us through all this.

My prayer is that this medicine works, and that she might be able to stay on a low enough dose to reap the benefits without the risks. I love this girl. She needs a life of happiness, the Jonas Brothers and frosty eyeshadow. If this is a means to that end then we will be beyond blessed.

Alrighty then

The doctor FINALLY called, apologizing for his terrible phone system. He raised her Prednisone to 40 mg., which is the highest dose she's been on since her Sjogren's diagnosis a year ago. He said that there was a dramatic difference in the body's response when you go from 30 to 40 and thought she should see some improvement in a couple of days. Why then, did he not try this dosage a long time ago? He has admitted that because she is dealing with issues that he doesn't regularly treat that he may not be as aggressive as a rheumatologist that sees adults would be. She'll be seventeen in less than a year and that's the magic number when an adult rheumatologist will see her. Other than his phone system, I have no complaints about her doctor. Pediatric Rheumatologists are in very short supply (would you believe there are 10 states WITHOUT one) so I understand why it's hard to get in touch with him sometimes. Most likely, I'll be scheduling her to see another doctor the day after her seventeenth birthday. We need aggressive.

I finally found the saline gel that the ENT recommended for her nose. Not sure it's helping, but that along with saline spray and a vaporizer in her room will hopefully keep her more comfortable. Her lips have been less chapped since we started keeping her room "moister" and reducing the use of our air conditioning system. The nosebleeds continue but are less frequent. I almost feel like she should live somewhere that was steamy like a green house. We see 100 percent humidity often so I shouldn't complain.

Tonight she's going to a sleepover with her Sunday school class. A little more fun in her life would be a good thing.