jillian Posted February 21, 2012 Share Posted February 21, 2012 Does anyone's kids have JRA (aka JIA)? How does it affect their schooling? We suspect this is what is going on with DD (4 years) Quote Link to comment Share on other sites More sharing options...
JudoMom Posted February 21, 2012 Share Posted February 21, 2012 My ds9 does. He started showing symptoms at 2, and was finally diagnosed at age 4. Since he's dealt with it for so long, I can't say what is personality and what is a product of his JRA. He's got the ability to completely go to another world when he doesn't like something (pain, or math, for example). He daydreams in a way that my other boys don't, and I really do think it's a coping skill that he learned. He also spends a lot of time tired, because chronic pain wears you down. There are times when I let him go to bed instead of schooling because he's so wiped. He's currently only on Naprosyn for his pain. He was on methotrexate but had an extremely weird reaction (so weird that the pediatric rheumatologist for our state hadn't seen it in 30 years). Then he was on Enbrel, but we're concerned about injecting meds that haven't been around terribly long into a growing boy. I do try to keep him active (he does Judo with us and tumbling/trampoline gymnastics, and enjoys the outdoors), but I also try to be sensitive to his pain levels. :grouphug:--it's heartbreaking to watch your child in pain. Quote Link to comment Share on other sites More sharing options...
amyable Posted February 21, 2012 Share Posted February 21, 2012 My 4yo does.. He's so young he's not schooling though. He's only on naprosyn too - it's controlling, but not eliminating, his pain and inflammation. :grouphug::grouphug: to you too! Happy to answer any questions you have, but we've only been dealing with this since last July so I don't know much. Quote Link to comment Share on other sites More sharing options...
jillian Posted February 21, 2012 Author Share Posted February 21, 2012 Thanks everyone. We have been on a long and crazy journey the last few weeks. At first we thought she just had a virus. Ended up at urgent care because she complained about tummy pain and her temps were over 101. As well as the fact that she hurt so badly she didn't want to walk and/or bend at all. They said it was a virus and to keep an eye on her. Over the weekend she got much worse so Monday (2/6) and I called and got into the Ped. They ran bloodwork and her SED numbers came back at 120. They told us to go down to the ER. We did, got admitted for a week because her temps were over 103 consistently and she had no symptoms of being ill at all. Hospital ran tests and blood work. 11.8 CRP and 327 platelets on the last blood draw (2/9). We went to the Ped for a follow up on 2/14. They ran more blood work and her SED was 118, 24 CRP and 756 platelet count. Scheduled us with the Ped. Rheumatologist. She also started developing her rash and her joint pain was sticking around in the hospital. They began giving her Naprosyn (which we are continuing now) and it helps but she hurts sooooo badly in the morning and her temps spike in the evening and in the early morning and her rash is getting worse. The Ped Rheumatologist said that we will be most likely discussing medications and management techniques (she called to check on us yesterday) on March 1st when we go for our follow up. We've been keeping a journal of her pain and temperatures and rash. We are going to the ophthalmologist today to check for uveitis. The Ped. Rheum. is pretty sure that we will be getting the Systemic Juvenile Idiopathic Arthritis (SJIA) diagnosis come March 1st. We would've gotten the diagnosis when we went 2/15 but they couldn't feel the arthritis (they felt it in the hospital) but she said the Naprosyn was probably masking it. Quote Link to comment Share on other sites More sharing options...
jplain Posted February 21, 2012 Share Posted February 21, 2012 Did she get tested for Lyme disease? Tests can be negative for up to 30 days from infection and symptoms, so even if an initial screen was negative, it is worth retesting outside of that 30 day period. Quote Link to comment Share on other sites More sharing options...
jillian Posted February 21, 2012 Author Share Posted February 21, 2012 She has not. Quote Link to comment Share on other sites More sharing options...
DianeW88 Posted February 21, 2012 Share Posted February 21, 2012 My doctors all thought I had JRA as a child when I developed symptoms like your dd. Turns out....I was allergic to chocolate. :glare: Stopped eating chocolate and all symptoms went away. Oh, and I outgrew the allergy by age 12. Quote Link to comment Share on other sites More sharing options...
Momtoamayalilal2 Posted February 21, 2012 Share Posted February 21, 2012 Did they do ANA testing? My 2 yr old dd has polyarticular arthritis and was diagnosed at 15 months old last March. She has been on methotrexate for the last 9 months and is almost in "remission". Her sed rate has gone down to normal on meds, but she still has one finger that is showing inflammation, so she'll stay on the metho until it goes away (and even after that). My soon to be SIL actually has systemic JRA and is still battling it at 36 yrs old. She has been on methotrexate several times in her life and is ok despite that. I was extremely worried about having a baby on such a strong med, but she encouraged me to try it and I am so glad we did. My dd was in so much pain, not even the naprosyn was touching it. Once she was on the metho for about 4-6 weeks(we do an injection once a week) she was a different baby. Quote Link to comment Share on other sites More sharing options...
Momtoamayalilal2 Posted February 21, 2012 Share Posted February 21, 2012 One thing I forgot to mention is that I had to be down right demanding to get my dd in sooner than they scheduled her. She was in so much pain that she would soend her morning nursing for several hours. I drove 60 miles to the nearest Ped Rheumy so that we could get a dx right away and start her meds. They say that they cant give a definitive diagnosis until they have been symptomatic for 6 weeks, but I got a diagnosis in far less time for my persistance. I just couldnt see her suffering because of their "protocol". Quote Link to comment Share on other sites More sharing options...
jillian Posted February 21, 2012 Author Share Posted February 21, 2012 Our Ped Rheum. is great. She called and asked if I thought dd needed to be seen sooner. The Naprosyn is helping a lot, but the second it starts to wear off she is miserable again. It'll be 6 weeks by March 1 that she's been having symptoms Quote Link to comment Share on other sites More sharing options...
Momtoamayalilal2 Posted February 21, 2012 Share Posted February 21, 2012 Our Ped Rheum. is great. She called and asked if I thought dd needed to be seen sooner. The Naprosyn is helping a lot, but the second it starts to wear off she is miserable again. It'll be 6 weeks by March 1 that she's been having symptoms Ours is great too! The problem was that she was on maternity leave during all of that and there are only 2 Rheumys in my area! It was a very stressful time, but I had to definitely be a bit more pushy since there was only one on staff in the whole region. My dd was only 15 months old so I had a really hard time getting her to even take the naprosyn.....it went well the first few days, but after that she didnt want anything to do with it. Imagine having to force a baby to take meds in the morning while she was so stiff and in pain. So glad it is helping your dd! Quote Link to comment Share on other sites More sharing options...
treestarfae Posted February 21, 2012 Share Posted February 21, 2012 This reminds me of when my daughter was 4 she had Henoch-Schonlein Purpura. She couldn't walk because of joint issues and a rash on her legs. My uncle had it when he was little and my family has rheumatoid issues but I don't have any. It seemed to skip me. HSP only lasts about a month and the best thing for it was antihistimine to stop the body from attacking itself, immune issues. The younger the kids are the better because it can affect the kidneys badly I think. My daughter is ok now and she called the rash kitty spots for some reason. Do you have any rheumatoid diseases run in your family? Thanks everyone. We have been on a long and crazy journey the last few weeks. At first we thought she just had a virus. Ended up at urgent care because she complained about tummy pain and her temps were over 101. As well as the fact that she hurt so badly she didn't want to walk and/or bend at all. They said it was a virus and to keep an eye on her. Over the weekend she got much worse so Monday (2/6) and I called and got into the Ped. They ran bloodwork and her SED numbers came back at 120. They told us to go down to the ER. We did, got admitted for a week because her temps were over 103 consistently and she had no symptoms of being ill at all. Hospital ran tests and blood work. 11.8 CRP and 327 platelets on the last blood draw (2/9). We went to the Ped for a follow up on 2/14. They ran more blood work and her SED was 118, 24 CRP and 756 platelet count. Scheduled us with the Ped. Rheumatologist. She also started developing her rash and her joint pain was sticking around in the hospital. They began giving her Naprosyn (which we are continuing now) and it helps but she hurts sooooo badly in the morning and her temps spike in the evening and in the early morning and her rash is getting worse. The Ped Rheumatologist said that we will be most likely discussing medications and management techniques (she called to check on us yesterday) on March 1st when we go for our follow up. We've been keeping a journal of her pain and temperatures and rash. We are going to the ophthalmologist today to check for uveitis. The Ped. Rheum. is pretty sure that we will be getting the Systemic Juvenile Idiopathic Arthritis (SJIA) diagnosis come March 1st. We would've gotten the diagnosis when we went 2/15 but they couldn't feel the arthritis (they felt it in the hospital) but she said the Naprosyn was probably masking it. Quote Link to comment Share on other sites More sharing options...
treestarfae Posted February 21, 2012 Share Posted February 21, 2012 Our Ped Rheum. is great. She called and asked if I thought dd needed to be seen sooner. The Naprosyn is helping a lot, but the second it starts to wear off she is miserable again. It'll be 6 weeks by March 1 that she's been having symptoms Jillian have you tried antihistimine? Quote Link to comment Share on other sites More sharing options...
treestarfae Posted February 21, 2012 Share Posted February 21, 2012 This is HSP http://en.wikipedia.org/wiki/Henoch-Schonlein_purpura My daughter's rash wasn't as severe as the ones in the pics. It developed after being exposed to a flu of some sort. Most people in the medical field had no idea what it was. The diagnosis came from a Children's Hospital that rarely sees it. Quote Link to comment Share on other sites More sharing options...
lauranc Posted February 21, 2012 Share Posted February 21, 2012 I have a child with JRA-- We spent about 5 yrs looking for a correct diangosis, and symptoms showed around age 1. It was a difficult time. My child has significant delays-- which include speech, cognitive and learning--and they have been attributed to the 5 yrs of unmanaged chronic pain. I would recommend hitting the arthritis hard to try and get it under control quickly. Good luck! Quote Link to comment Share on other sites More sharing options...
jillian Posted February 21, 2012 Author Share Posted February 21, 2012 She doesn't even know her rash is there, it's not effecting her at all. Her ophthalmologist said there was no evidence of uveitis so that is great news. As an aside: insurance is making me nuts with the ophthalmologist. treestar: the rash is sub-dermal so it's not raised at all in any way. I apologize if my PM was rude, I did not mean it to be. I am dealing with a child and husband who all need to talk to me at every second of the moment lol. Quote Link to comment Share on other sites More sharing options...
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