April 26, 2012

We filled Maddie's prescription and she continues to take Naproxen. Her flair is getting worse. Yesterday she woke up and the entire right side of her body was hurting, knee, wrist, etc. She couldn't walk or hold a pencil to write. That's not good since the California Achievement Testing is still going on. Because we have a 504 plan in place, her teacher was going to sit next to her during the test and bubble in the answers Maddie gave her. But, once they started they both realized that since it was math testing Maddie needed to be able to figure out the problems on scratch paper. The teacher couldn't help her with that. So, no testing yesterday. She'll have to do make-up testing another day. The medicine helped her so that by the afternoon she was able to attend her violin lesson. One good thing about the right hand being inflamed is that it only has to hold the bow. On the violin, it's the left hand fingers that have to do all the really hard work.

April 23, 2012

I received an email response from Maddie's pediatrician today. She is re-writing Maddie's prescription with an exemption listed on it to cover the cost of the medicine. I wonder how many times I can get that exemption? I suppose this is the new way in health care. Insurance companies make their formulary lists and doctors override them as necessary. Are there consequences if a doctor overrides too often?

April 20, 2012

Maddie saw her Rheumatologist at Children's Hospital today and now I'm in a huge battle with my insurance company. They don't want to cover her prescription for Naproxen suspension (liquid). Apparently as of this January it is no longer on the Formulary list (meds covered by our insurance). Seriously? It's the staple anti-inflammatory drug for arthritis! There is really no alternative for children. The pharmacist suggested Advil, so ridiculous. If Advil worked why would we be needing a prescription medication? I spent an hour and a half on the phone, sending emails and leaving messages for her pediatrician, the pharmacy, member services for my insurance company. Maddie's Rheumatologist said we could switch to liquid Meloxicam but apparently it is unavailable in the US at this time. My insurance company has no problems covering my $2000/month Enbrel prescription but can't handle a $90/month liquid anti-inflammatory for a little girl. It's outrageous!

April 19, 2012

Maddie is having a flair-up. Both knees are affected this time. She is preparing for the ballet Cecchetti exams next month so this has not come at a great time, not that it's ever a good time for an arthritis flair. I'd rather be in pain than watch her suffer. It's almost unbearable watching your child deal hurting. She's got a happy attitude though and is so very graceful as she deals with another setback. 

Maddie and I both have HLA-B27 arthritis but hers manifests so differently from mine, as most juvenile arthritis does. Maddie has periodic flairs that show up without rhyme or reason. They may last a few days or a few weeks, then she is symptom free for weeks or months. Mine stays with me every hour of every day.

April 15, 2012

I caught a cold, nothing extraordinary under normal circumstances, but extremely painful when you're on immunosuppressants. I had to quit my lovely meds for two weeks while my body fought a cough and sniffles, only it's not just a little cold for an arthritis sufferer. Without the Enbrel and Methotrexate the arthritis pain returns full force within a matter of days. I was healthy enough to receive an Enbrel injection a couple of nights ago and I woke up the following morning with relief in my joints. Oh how I love 21st century medicine.