As I have mentioned in the past, the purpose of this blog is to record and JRA issues Mia may be having. She has been fine for the last month or so...until today. She has been complaining all day long that her left knee has been hurting. So, I did some of her at-home PT exercises with her and applied dry heat to the joint to help loosen it up.
In the past, whenever we were about to get a snow storm, Mia's joints swelled up from the barometric pressure. It became a pattern: storm + pressure = inflamed joints. And we are expecting another major storm tomorrow, so I am going to see how she is after that. If she isn't better in the next few days, I am going to call her PT to schedule an appointment.
Stay tuned.....
Hi, my name is Amber Doty, fellow mom of daughter with JRA. I just read almost your entire story. I'm so glad you are doing this and wish I would have done the same (it's never too late to start!) My daughter, Audrey is now 7 and was diagnosed with JRA at 18 months of age. It has settled in her right knee. It did go into remission a couple of times and we thought we had it licked. I too did the GF DF diet and had great result, but it was hard for me to discern if it was that or the medicine or her outgrowing or seasonal. I still struggle with diet to this day and you're right, it is harder when they are older and are more aware of what they are missing. I just wanted to share a couple of things with you. I did nurse Audrey exclusively until she was about 11 months old. It didn't seem to make a difference. The other note was that in kindergarten Audrey started getting what looked like little scratches on her face. When I took her into the rheumatologist she was alarmed and took her off the naproxen because she said that it was an allergic reaction to the medicien when she was in the sun. (she had been on and off of naproxen for the past 5 years). It did cause some scarring on her face. I just advise that she always wear sunscreen and or a hat when outside. It only happened on her face and the doctor changed her meds. I appreciate your blog. I found a premade frozen pack of 4 indiviual pizza crusts at Woodman's grocery. I have only been there once and have since used and thrown away the package, but it is out there. Thanks for making your beautiful blog public. I will share it with my daughter. She doesn't know anyone else that has it. She is the youngest of 4 girls.
ReplyDeleteHi Amber! Thank you so much for your comment and helpful advice. I did not know about the possible allergic reaction from naproxen when exposed to the sun. Her doctor just switched her to ibuprofen yesterday because the naproxen is no longer working for Mia. If, she ever has to go back on it, though, I will keep a eye out for that!
ReplyDeleteI am very, very sorry to hear about your daughter's battle with JRA. Has she ever had to have her knee drained or steroid injections? Mia is supposed to go in on Monday to have her knee drained, etc. This is her first time having this procedure done.
We will keep Audrey in our prayers. This disease is HORRIBLE and the whole thing just boggles my mind - children with arthritis. Ugh!! It is just not right!!
Thank you again for your comments and kind words.
Dana