Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 I just found this list... I can't believe it took me so long or that it is so active. My daughter was finally diagnosed with JRA in July. We are VERY lucky to have a pediatric rheumatologist in our town. a has had knee pain on and off for years. We were originally told that they were " growing pains " . Last October she was having so much back, neck and shoulder pain that she missed over a week of school. November and December weren't much better. She first saw the ped. rheum. in November (on her tenth birthday). She did some blood work (which ahs all been negative) and put her Naproxen and by the end of January everything was great. Not realizing what was going on we took her off the Naproxen thinking whatever she " had " was better. Then it started all over in May. We got her back in to see the Dr. and were basically told that she needed to be back on the Naproxen long term. She has been back on the Naproxen long term since then and we finally got the JRA diagnosis in July. She does good for a while and then has a bad week. We basically let her whatever she feels up to. She definitely pushes herself, sometimes too much. Lately she has had itchy bumps on her scalp and she has been getting sores in her mouth. She also just showed me that she has ridges on her fingernails. Has anyone else experienced this. I don't know if it's JRA related or something different. Thank you! Billie-jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 showed me that she has ridges on her fingernai Hi, that little statement right there is a VERY powerful one.Report it to the ped rheumy ASAP!!!! You may have your real first symptom of a type of JA called Psoriatic Arthritis. The skin condition has not happened yet which is very common.The diagnosos starts out very vague,looking more like pauci (fewer then 4 joints) and only young girls truly get.It can and will effect joints,tendons,ligaments,etc but early on there is not much if any swelling,just pain and tenderness.Thats even up to the person and how far the disease has progressed. Treatment has come so FAR in the last decade there is every hope that your child spends most of it symptom free. If they dismiss the ridges in the nails it is time to drive for a second opinion and you bet we can help. From: thejarys <Beamjary@...> Sent: Saturday, January 31, 2009 2:52:45 PM Subject: New to the list I just found this list... I can't believe it took me so long or that it is so active. My daughter was finally diagnosed with JRA in July. We are VERY lucky to have a pediatric rheumatologist in our town. a has had knee pain on and off for years. We were originally told that they were " growing pains " . Last October she was having so much back, neck and shoulder pain that she missed over a week of school. November and December weren't much better. She first saw the ped. rheum. in November (on her tenth birthday). She did some blood work (which ahs all been negative) and put her Naproxen and by the end of January everything was great. Not realizing what was going on we took her off the Naproxen thinking whatever she " had " was better. Then it started all over in May. We got her back in to see the Dr. and were basically told that she needed to be back on the Naproxen long term. She has been back on the Naproxen long term since then and we finally got the JRA diagnosis in July. She does good for a while and then has a bad week. We basically let her whatever she feels up to. She definitely pushes herself, sometimes too much. Lately she has had itchy bumps on her scalp and she has been getting sores in her mouth. She also just showed me that she has ridges on her fingernails. Has anyone else experienced this. I don't know if it's JRA related or something different. Thank you! Billie-jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Welcome! I'm still a newbie here myself, but thus far everyone seems so awesome and very, very supportive. There is a wealth of knowledge here! The mouth sores... she's not on methotrexate? I know when one is on mtx mouth sores are common. The suggest folic acid for that. I'm not sure if that would help when you're not on it, but it may be worth looking into. I really hope that you find meds soon that will really help her. It's a slow process, but there is a light at the end of the tunnel. Take care! > > I just found this list... I can't believe it took me so long or that > it is so active. My daughter was finally diagnosed with JRA in July. > We are VERY lucky to have a pediatric rheumatologist in our town. > a has had knee pain on and off for years. We were originally told > that they were " growing pains " . Last October she was having so much > back, neck and shoulder pain that she missed over a week of school. > November and December weren't much better. She first saw the ped. > rheum. in November (on her tenth birthday). She did some blood work > (which ahs all been negative) and put her Naproxen and by the end of > January everything was great. Not realizing what was going on we took > her off the Naproxen thinking whatever she " had " was better. Then it > started all over in May. We got her back in to see the Dr. and were > basically told that she needed to be back on the Naproxen long term. > She has been back on the Naproxen long term since then and we finally > got the JRA diagnosis in July. She does good for a while and then has > a bad week. We basically let her whatever she feels up to. She > definitely pushes herself, sometimes too much. > Lately she has had itchy bumps on her scalp and she has been getting > sores in her mouth. She also just showed me that she has ridges on > her fingernails. Has anyone else experienced this. I don't know if > it's JRA related or something different. > Thank you! > Billie-jo > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 This is only my second post. But thought I would update everyone on my daughter, a's last rheumy appt. the Dr. said that her joints seem to be doing well. All bloodwork is fine (always has been). a has been on 250 mg Naproxen twice a day. She has not been pain free with this although she is MUCH better than she was before. Her rheumy added a 125 mg dose in the middle of the day during " bad times " . a definately flares when the temperature is really cold (which is difficult since we live in Buffalo). Now to my next question... We can tell when a is starting to not feel well even before she does. She gets pale, cranky, and slows down. She is 11 and very smart and fun when she feels good. I honestly don't think she realizes this is happening. When we ask her how she's feeling she gets really snippy and says " fine " . The only time she will admit to not feeling well is when it is so bad she can barely move. I get very frustrated with her. Then we were talking (my parents, my husband, and I) and got to thinking that maybe because she has had some of these problems forever and they just gradually got worse that she doesn't realize it's not normal. Does anyone else run into this with their kids? Any my last question... Does it every really sink in? a was officially diagnosed last July. She has been having serious problems for a couple years. Sometimes she goes a week feeling good, sometimes it's a couple months. And when it hits her again it hits me again. I know this is something she will probably have to live with forever. But every time she has a good spell I think this is it. I prayed and prayed for a diagnosis so that we could start working on making her better. Now I feel like we are only helping her cope. I gues my question is do you ever get used to your child being ill? Or does it tear you apart forever? Thank you all so much for your support. Reading your posts over the last few weeks has been a huge help. Just knowing that we are not alone in this. Thanks! Bille-jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi Billie-jo, I can't help with your question bc I am so very new to this and we don't have a diagnosis yet. I can relate to the tearing you up part, though. I sobbed like a baby last year when my child couldn't walk, and was even more distraught and confused when well-wishers told me it was " growing pains " . The only one that has been concerned is my ped, who saw the joint inflamed. The ortho and rheumy didn't even acknowledge the limp which was ever so mild by the time I had my appt last August. I found the ED discharge note yesterday and I just got emotional reading the " problem " - " not likely an infection, cannot rule out other causes such as rheumatic dz " . I can understand a trying not to make a big deal out of it at her age and sort of getting used to it. Someone here, I think it was Georgina, made a comment about how all of us have something, and arthrits sufferers eventually come to terms with the fact that arthritis is their " something " . No sense in stewing in it, although as parents, I don't see how one cannot be repeatedly emotionally in pain due to their child's suffering. How can you not be torn apart seeing your child go downhill before your eyes, or hear your child say he/she can't walk bc their knees hurt- when they are three or eleven?!!!!!!!!!! I am up with sick kids again, this time, respiratory-just hope it's not RSV. My poor child- the other twin- just got over a 5 day rotovirus and really hasn't got any fat on him to deal with more calorie expenditure from breathing fast and coughing constantly right now. I have given him so many OTC meds. We got our labs back on his brother, the one we are working up. The sed rate was 10, but the lympocytes were 77, so it is obvious he was fighting a virus when this knee pain and inflammation occurred. I hope you somehow come to a peace with your daughter's illness, that is my hope for all of us. We cannot let this dominate our lives and our hopes for our children's futures. mom to Harry, three, in the diagnostic phase- 2nd rheumy appt, March 4th ---- Billie-jo Jary <Beamjary@...> wrote: > This is only my second post. But thought I would update everyone on my daughter, a's last rheumy appt. the Dr. said that her joints seem to be doing well. All bloodwork is fine (always has been). a has been on 250 mg Naproxen twice a day. She has not been pain free with this although she is MUCH better than she was before. Her rheumy added a 125 mg dose in the middle of the day during " bad times " . a definately flares when the temperature is really cold (which is difficult since we live in Buffalo). > > Now to my next question... We can tell when a is starting to not feel well even before she does. She gets pale, cranky, and slows down. She is 11 and very smart and fun when she feels good. I honestly don't think she realizes this is happening. When we ask her how she's feeling she gets really snippy and says " fine " . The only time she will admit to not feeling well is when it is so bad she can barely move. I get very frustrated with her. Then we were talking (my parents, my husband, and I) and got to thinking that maybe because she has had some of these problems forever and they just gradually got worse that she doesn't realize it's not normal. Does anyone else run into this with their kids? > > Any my last question... Does it every really sink in? a was officially diagnosed last July. She has been having serious problems for a couple years. Sometimes she goes a week feeling good, sometimes it's a couple months. And when it hits her again it hits me again. I know this is something she will probably have to live with forever. But every time she has a good spell I think this is it. I prayed and prayed for a diagnosis so that we could start working on making her better. Now I feel like we are only helping her cope. I gues my question is do you ever get used to your child being ill? Or does it tear you apart forever? > > Thank you all so much for your support. Reading your posts over the last few weeks has been a huge help. Just knowing that we are not alone in this. > > Thanks! > Bille-jo > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi Billie-jo. Yes when the kids are not feeling well you can tell with some. They often get cranky and tired before a flare will hit. Plus, your daughter is 11 - having had two daughters go through that, it is normal for them as well. Even boys of that age can have it happen. Hormones, anyone? I am a bit concerned about a only being on Naproxen though. Of course, that is up to you and your dr, but if she is having days of pain and flares, her arthritis is not under control. Many drs feel that adding a DMARD early in the course of the disease helps to get things under control and lessen the damage that can occur. Has the rheumy talked about adding any different meds to help a? One thing I always remember is what my son's rheumy told us during one of our first visits - the goal is to get the child pain free. There are so many different meds out there that can help by going after the disease itself, not just an NSAID which only helps with inflammation. That is of course very important, but does not do a whole lot to stop the disease. My son's dr wanted him off the NSAID as soon as we could, so we used methotrexate to get the disease under control. He was able to stop his Celebrex, as the dr believed the side effects from an anti inflammatory could be worse. This is of course our experience. Maybe if you could get the disease under more control, she would have less pain. Good luck, let us know how she is doing, Michele ( 21, spondy) ________________________________ From: [mailto: ] On Behalf Of Billie-jo Jary Sent: Wednesday, February 18, 2009 5:36 PM Subject: Re: New to the list This is only my second post. But thought I would update everyone on my daughter, a's last rheumy appt. the Dr. said that her joints seem to be doing well. All bloodwork is fine (always has been). a has been on 250 mg Naproxen twice a day. She has not been pain free with this although she is MUCH better than she was before. Her rheumy added a 125 mg dose in the middle of the day during " bad times " . a definately flares when the temperature is really cold (which is difficult since we live in Buffalo). Now to my next question... We can tell when a is starting to not feel well even before she does. She gets pale, cranky, and slows down. She is 11 and very smart and fun when she feels good. I honestly don't think she realizes this is happening. When we ask her how she's feeling she gets really snippy and says " fine " . The only time she will admit to not feeling well is when it is so bad she can barely move. I get very frustrated with her. Then we were talking (my parents, my husband, and I) and got to thinking that maybe because she has had some of these problems forever and they just gradually got worse that she doesn't realize it's not normal. Does anyone else run into this with their kids? Any my last question... Does it every really sink in? a was officially diagnosed last July. She has been having serious problems for a couple years. Sometimes she goes a week feeling good, sometimes it's a couple months. And when it hits her again it hits me again. I know this is something she will probably have to live with forever. But every time she has a good spell I think this is it. I prayed and prayed for a diagnosis so that we could start working on making her better. Now I feel like we are only helping her cope. I gues my question is do you ever get used to your child being ill? Or does it tear you apart forever? Thank you all so much for your support. Reading your posts over the last few weeks has been a huge help. Just knowing that we are not alone in this. Thanks! Bille-jo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2009 Report Share Posted February 19, 2009 Hi Billie-Jo - Yes - I think that is so true. The kids have dealt with that pain for so long that they don't realize that it isn't right. When we started all this with Grant, he had no pain with his inflammed joints. I asked our rheumy if that was normal and he said that it is in about half of his patients. But many of them once they start meds like MTX will start to feel so much better that they realize what they were feeling before meds was not normal. It sounds to me like adding another medication like mtX could really help her feel better. I don't feel that a should have to " cope " with feeling bad when there are other meds to try other than Naproxen. Naproxen does not stop the progression of the disease it just controls pain and inflammation. A DMARD like MTX will stop the progression of the disease and very probably make a feel better. To answer your last question, we've only been at this about 2 years too and I certainly haven't gotten " used to it " it is always there. But this group helps me so much. Since I don't know anyone personally that has a child with JRA, this group helps me cope with it all. & Grant (12, PsA/Uveitis) > > This is only my second post. But thought I would update everyone on my daughter, a's last rheumy appt. the Dr. said that her joints seem to be doing well. All bloodwork is fine (always has been). a has been on 250 mg Naproxen twice a day. She has not been pain free with this although she is MUCH better than she was before. Her rheumy added a 125 mg dose in the middle of the day during " bad times " . a definately flares when the temperature is really cold (which is difficult since we live in Buffalo). > > Now to my next question... We can tell when a is starting to not feel well even before she does. She gets pale, cranky, and slows down. She is 11 and very smart and fun when she feels good. I honestly don't think she realizes this is happening. When we ask her how she's feeling she gets really snippy and says " fine " . The only time she will admit to not feeling well is when it is so bad she can barely move. I get very frustrated with her. Then we were talking (my parents, my husband, and I) and got to thinking that maybe because she has had some of these problems forever and they just gradually got worse that she doesn't realize it's not normal. Does anyone else run into this with their kids? > > Any my last question... Does it every really sink in? a was officially diagnosed last July. She has been having serious problems for a couple years. Sometimes she goes a week feeling good, sometimes it's a couple months. And when it hits her again it hits me again. I know this is something she will probably have to live with forever. But every time she has a good spell I think this is it. I prayed and prayed for a diagnosis so that we could start working on making her better. Now I feel like we are only helping her cope. I gues my question is do you ever get used to your child being ill? Or does it tear you apart forever? > > Thank you all so much for your support. Reading your posts over the last few weeks has been a huge help. Just knowing that we are not alone in this. > > Thanks! > Bille-jo > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I know that our ped rheumy's goal is to get a pain free for 1 year on meds in the hope that we would then be able to stop the meds and hope that she remained pain free. Actually this was working quite well, I thought. When we put her on the naproxen it helped SO much! Then over the past few months she started having small flares and now this one is probably the worst she's had on Naproxen. But it is not even comparable to what she was going through before. We just uped her Naproxen this week. I was hoping that would do the trick. Is it normal for a drug to work for a while and then stop? I'm scared to death of her going on another med. Thanks again for everyones support! This group is amazing!!! Billie-jo Re: New to the list This is only my second post. But thought I would update everyone on my daughter, a's last rheumy appt. the Dr. said that her joints seem to be doing well. All bloodwork is fine (always has been). a has been on 250 mg Naproxen twice a day. She has not been pain free with this although she is MUCH better than she was before. Her rheumy added a 125 mg dose in the middle of the day during " bad times " . a definately flares when the temperature is really cold (which is difficult since we live in Buffalo). Now to my next question... We can tell when a is starting to not feel well even before she does. She gets pale, cranky, and slows down. She is 11 and very smart and fun when she feels good. I honestly don't think she realizes this is happening. When we ask her how she's feeling she gets really snippy and says " fine " . The only time she will admit to not feeling well is when it is so bad she can barely move. I get very frustrated with her. Then we were talking (my parents, my husband, and I) and got to thinking that maybe because she has had some of these problems forever and they just gradually got worse that she doesn't realize it's not normal. Does anyone else run into this with their kids? Any my last question... Does it every really sink in? a was officially diagnosed last July. She has been having serious problems for a couple years. Sometimes she goes a week feeling good, sometimes it's a couple months. And when it hits her again it hits me again. I know this is something she will probably have to live with forever. But every time she has a good spell I think this is it. I prayed and prayed for a diagnosis so that we could start working on making her better. Now I feel like we are only helping her cope. I gues my question is do you ever get used to your child being ill? Or does it tear you apart forever? Thank you all so much for your support. Reading your posts over the last few weeks has been a huge help. Just knowing that we are not alone in this. Thanks! Bille-jo Quote Link to comment Share on other sites More sharing options...
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