Today marks the beginning of the 22nd week of Systemic JRA for Allison. (148 days for those who are keeping score at home.) This past weekend, Leslie and I (yes this is Allison's dad making my first post on the blog) both expressed significant concern regarding Allison's situation with her fevers continuing daily, no lab work to tell us how she's doing, and no scheduled visit with a doctor for at least another three weeks. So we decided that this was going to be the week to focus on making some things happen. On Tuesday I contacted her primary care physician, Dr. Irvine and "spilled my guts" regarding our concerns; he got us in the next day, on Wednesday, for an exam and a full set of labs. Also on Tuesday, we got in touch with Dr. Kingsbury's office at Emanuel Children's Hospital, the only other Pediatric Rheumatologist in Oregon, and requested an appointment. They were very accommodating and were able to squeeze us in today. In addition, Allison had a previously scheduled appointment with her pain management specialist at Dornbecker's, also located in Portland.
On Thursday we received the results of Allison's blood test. Her inflammatory markers were all still very high (Sed Rate of 91 (0 to 20 is normal) and CRP of 125.2 (0 to 4.9 is normal)). Her liver function tests were normal (this was a concern of ours because of her being on Methatrexate), and our PCP was also very concerned because she was so anemic. He suggested some changes to her Aleve and adding an iron supplement to assist with the anemia. Unfortunately, as Dr. Kingsbury reminded us today, Allison's anemia is related to her inflammatory disease and is to be expected. Any supplemental iron will unfortunately not do anything to change her anemia.
Thursday's appointment at Dornbecker's went well. We utilized some "extra" time at OHSU to do some research at their medical library (thank you Brian for your assistance with this). There's a lot to learn about this disease and unfortunately limited material to review.
Friday's appointment with Dr. Kingsbury went "well." Allison was not feeling good so this unfortunately made the appointment more stressful for all of us and an uncomfortable and painful experience for her. Half-way through the appointment, Allison couldn't stand it any longer, so Leslie took her to the van to lay down while I finished up the meeting with the doctor. All total, he spent over two hours with us, answering our questions and defining his course of action for her care and treatment. The end result is that we now have a new Pediatric Rheumatologist for Allison and her medication list has grown substantially. As of this evening, she is now taking Prednisone, Methatrexate, Folic Acid, Aleve, Forzofran, AcipHex, and a daily vitamin. And the wait begins to see if the Prednisone will control her fevers (this is the only medication that may possibly impact the fevers), and to see what negative side effects she will have to deal with as a result of taking it.
So, Allison went to bed with a 100.4 temp tonight. After about 90 minutes of sleep, she just woke up all sweaty as her fever had broke for the evening.
The next few days will be interesting. We're praying for a significant change in her condition and an easy weaning off of the prednisone. I'm sure that no one is more tired of the daily fevers than Allison. For her sake, I really hope that this portion of the disease process will end soon. Unfortunately, who knows what's coming around the corner once we move past her current situation.
Sorry about the length of this message. A lot has happened rather quickly for which Leslie and I are both thankful for. Keep praying and we'll try to keep everyone posted as things progress.
John
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