Well, it's been one whole week of Orencia as of tomorrow afternoon. My guess is that Emily is very sensitive to medications... in a good way! Again, after speaking to the Orencia reps, other people with experience with it, and doing research online I was not expecting to see any results for quite some time. At first I thought maybe it was just a coincidence until I remembered that she was off of her Enbrel a full eleven days before her first dose. Every day she has felt a little better. Yesterday she excitedly told us that her knees were popping. Today they continue to pop. That is a relief for her. Also, she is showing me how she can do things now that she couldn't do even nine days ago before we started it. She says that she can straighten her knees better now! I am so relieved!!! She also said that there is no pain in her wrists, as she excitedly maneuvered them around in different positions. That is huge because that has always been a big source of pain for her. When she went to camp over the summer, the doctor that examined her there played with her wrist first in her exam, and right away told me that she was not under good control. That was back in June, so all of this time she's been hurting. What an amazing little girl we have!!! I'm sure that most adults would have whined and complained the whole summer. She just politely asks for baths.
Also, although I can't find any link to it, her Raynaud's seems to have toned down a bit, too! When we were at the Open House for our school on Tuesday (the first full day after Orencia!) her teacher said that they had noticed the difference. She hasn't come home with an opened hand warmer in the last week, either. She told me earlier that it's in her toes a little bit, but she hasn't needed mittens since being on it, either! I hope that will come under control. It is so sad that our little princess can't wear dresses, or even shorts in 95F degree weather. It's sad that she can't swim unless the water is like bath water or she'll hurt all over and the blood stops flowing. I've finally found a personal story on Raynaud's, and the man writing it said that when his hands go white it is worse than anything he ever experienced in all of his years in the military and in his years as a police officer. My girl has these episodes several times a day. She has never complained. For anyone that is interested, I went to http://www.raynauds.org/ , clicked on the Cold Cuts newsletter, and read the featured story. I love to read personal stories because it helps me to understand her better.
Also, please let me know if there is a great pair of gloves out there for children that are very warm, but could also be thin enough to hold a pencil like with regular mittens. I am trying to prepare for winter for her. I suspect that it's going to be like last winter- very cold for Florida. Having lived down here since December of 1991 I know NOTHING about winter gloves!!! I suspect that whatever we decide on, we'll have to order online. Thank you in advance for any input that you may have!!!
*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!
Sunday, September 19, 2010
Week one of Orencia
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