Since August Sarah has had bumps on her fingers, elbow, knees and toes. And occasionally bright red cheeks that make her look like she has a fever. Today we have mapped out a plan on how to treat her. Sarah has a rare auto-immune disease called Juvenile
Dermatomyositis. We will start weekly injection, done by Robert and bi-monthly
IVIG (going monthly after three sessions). She does not have any evidence of muscle weakening, right now, so we (parent and doctors) hope to kick
JDM butt and put Sarah into remission before she gets worse.
She will always need to have major sunscreen on when she goes outside, or we risk a flare up. Yes, with this disease she is sun sensitive. The bumps (gottron papules) first showed up after spending the day at Crystal Cove State Park in California. By the time we returned to my sisters house in Irvine, the bumps had shown up.
Sarah is a trooper. She is okay with the idea of weekly shots and a monthly I.V. I just hope that making a preemptive strike on JDM works.
2 comments:
Good Luck, I am so sorry your little one is going through all of this, PCMC is such a wonderful hospital, she is in GREAT hands.. Take care!
sorry to hear this is happening! I wish we were there to help out as well. Sarah is a troop as are you and Rob. We sure do miss our Aycock cousins and friends. Keep in touch.
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