Well, as I predicted, since going off of the Methotrexate injections Emily is slowly flaring. It started as stiffness all of last week, along with a slow down. Two nights ago I noticed that her elbows were red and where the bone poked out was all white. Very inflamed. Today her hips are hurting her, and her knees and fingers are puffy again. Her next appointment isn't until September 27. I'm going to have to make it sooner, I think. I know how crazy busy her doctor's office is, and it's hard to get a call-back. Plus, with school starting soon, people are trying to get in beforehand. I'm hopeful, though.
The other news to note is that I've got a tentative appointment set to see our representative, Congressman Gus Bilirakis! The JA Conference really had me energized, and helped me to figure out what I was doing wrong as an advocate. Bilirakis has not given support to arthritis research & funding, so I have some obstacles to overcome. His district health officer seemed rather curious, and really sounded sad that I couldn't come in today. I've also got an email in to our rheumy's office to see if I can get lab evidence to help out a research study out of Emory Medical School, and I'm waiting on info from Children's Hospital of Philadelphia for a study they are doing. Both are trying to find DNA markers; one is focused soley on the patient, the other on the patient & parents. Finally, I'm trying to figure out what to do in September to help the C.A.R.R.A. group by gaining some community awareness. They are the group heading up the Juvenile Arthritis Registry! That is a very, very important step in gaining a standard of care and evidence of side effects of medications. Currently, they are playing roulette. The choices suck either way. Either you take the meds and hope for the best, or you can't walk, you're wheelchair bound and disfigured. Since the meds seem safe in adults, and so far the ones used for children are pretty good, we'll take our chances. It's terrifying either way, but I'd rather my child have a good quality of life if there is a way, and there is. Unfortunately, I think our way will be changing, our comfort zone already tearing apart. I do believe Orencia, an IV-given medication isn't very far off. Anyway, it is way later than it should be, and I have to be at work in the morning. Have a wonderful evening!
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Saturday, August 7, 2010
Here we go again
Subscribe to: Post Comments (Atom)
Post a Comment