We started Lucy's journey with JRA years ago and in January we turned an exciting corner. She had been on Enbrel and once we saw that it was working and she didn't have any symptoms the doctor started slowly decreasing her dosage. In December she had been free of symptoms for 6 months and was on a very small dose. Then last month she was taken off of all meds. CELEBRATION!
These last couple of weeks we have noticed that she was starting to limp a little and was complaining about her toes. We even got a call from school because they noticed that she was walking on her heals. The doctor suggested her taking 10ml of ibuprofen 3 times a day. I'm not too happy about it. I feel a little bit better after talking to the nurse today. We don't want her to be restricted or in pain and the side effects of ibuprofen are much less than the side effects of Enbrel.
To be honest JRA wasn't keeping me up at night. 75% of kids who are diagnosed grow out of it. I've just always felt that Lucy was going to be in that 75%. I'm starting to get a little nervous. She experiences most of her pain in her wrists and feet. If this pain continues it could really impact her progressing. I hate that the only thing we can do to help her is to put her on these serious medications. There's no surgery or anythings we can do to make it go away.
JRA is starting to keep me up at night.
Beef with Broccoli
2 weeks ago
2 comments:
Praying for you and Lucy tonight. There is nothing more difficult than seeing your kids in pain.
that was me, Kerri, by the way...not Eric!
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