Sunday, March 04, 2012

JRA



Lucy has just had her first major JRA flare up. It hasn't been pretty. It seems that it started in her toes and then led to swollen fingers and hands. (You can really tell in this pic how puffy her joints are) She's been on ibuprofen for a little over a week and it's like things are getting worse. On Thursday she came home from school with a rash all over her torso and she was really itchy. I called the doctor but didn't hear back from them. As the night went on things got worse. But by morning the rash didn't grow and they weren't raised anymore so she went back to school. I just figured it had something to do with her sensitive skin.

When I finally heard back from her rheumatologist he didn't think that it was because of the ibuprofen. Their suggestion was just to give her some benadryl. Then she came home from school on Friday and things were much worse. The rash/welts were on her back, stomach, underarms, bottom, and on her knees and elbows. At dinner she said it hurt too much to lift her fork. We thought about taking her to urgent care but decided to check with her pediatrician first.



On a side note, one thing I hate about calling a doctor is that I feel like I explain what's going on to so many different people. I call and say what's happening and whoever answers the phone tells me that a nurse will call back, then a nurse calls me back and I explain it all over again, then they go and talk to the doctor and that night the doctor called me back and I went through the story again. Anyway....



Dr. Rick, (who I think is great. One example: when he called he said, "Hi Mandy. It's Rick.) he thinks it is a reaction to her meds and told me that I could hold off giving them and see what happens. Yesterday I didn't give her meds and it was her best day. So this morning we started off with meds and her hand looks more swollen and she can't stop itching.



I don't know what we are going to do. There aren't a lot of options for meds. I'm hoping we can find something else so she doesn't have to go back on embrel.

She is such a trooper though. Still laughing playing and bringing light.

2 comments:

mommajelly said...

Poor Lucy. It is so sad to see our kids in pain. I am currently working with a little girl with JRA. She feels most of her pain in her ankles and feet. They've got her on Naproxen and methotrexate right now. but she's been on different combinations as her symptoms change. I hope Lucy feels better soon and that her symptoms subside. I'll be praying for her. Love you guys.
Jenelle

eric said...

Just a thought for you...Riley is allergic to ibuprofen. I noticed the rash every time he had it and it became more severe over time. It is a rare allergy and it took a trip to the ER to confirm that ibuprofen was the culprit. They think he will outgrow it, but he refuses to take any to see if that is the case! Love you guys. Abbey Craig is in our small group at church and she asked that we pray for you all last night. Just wanted you to know that so many different people are praying for your family right now!
Kerri