Discussions By Condition: Arthritis

4yr old with JRA

Posted In: Arthritis 7 Replies
  • Posted By: nikki76
  • May 2, 2007
  • 01:45 AM

Hello, I am new to this forum and reaching out to anyone with a similar diagnosis. My 4 year old daughter was diagnosed with pauciarticular JRA (in our case just one joint) in December. we're on Naproxen and things seem to be heading in the right direction as far as the joint status. We have (for years) serious sleep issues with her (common for systemic from what I have learned but not for pauciarticular) and recently we have a random rash flaring up (again common for systemic but not pauciarticular). We have food allergies in our family (father) which could account for the sleep and rash issues, but I just thought I would ask anyone if they are experiencing these issues with their children recently diagnosed with JRA.
Thank you for your time and comments

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7 Replies:

  • Nikki,I just wanted to touch base with you before we know for sure if my 2 year old daughter has JRA. Our daughter has been ill since November starting with occasional hives and fever then moving to hives daily with fevers as high at 105 daily and then getting pain in her hips, legs and fingers. She has been hospitalized several times and had almost every test imaginable to determine the cause of all of this and every specialist keeps saying it is a rhuematologic issue probably JRA or SoJIA which is even more rare but the few times we have seen him he says other than her finger being grossly swollen he does not think it is. He saw her last hospitalization in early April and now that finger is red and painful when it was not before and other fingers are becoming swollen. She lost weight and was on an ng feeding tube for 3 or 4 weeks and has stopped developing and has actually regressed and stopped even trying to walk or even crawl. She already has Down syndrome so she is already behind but now this puts her so far back it is horrible. I feel your frustration and pain for your child and it is so hard to not know and even when you do find out and it is something you can not do anything about it is horrible. I will get back with you when we know for sure but if we go by the pediatrician and 4 other specialists and 2 other doctors it is either JRA or SoJIA. Good luck to you and keep your head up
    Anonymous 42789 Replies Flag this Response
  • Hi--Just wondering if you got a diagnoses for your child. I have a daughter with down syndrome and systemic jra and thought we could compare notes!
    Anonymous 42789 Replies
    • September 11, 2007
    • 00:41 AM
    • 0
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  • Hi--Just wondering if you got a diagnoses for your child. I have a daughter with down syndrome and systemic jra and thought we could compare notes!hello!I am 26 and was diagnosed when i was 19 with Still's Disease not unlike JRA. I am in practically no pain these days and have figured out some really beautiful ways of managing it.I am trying to start up a program and am in the process of getting a grant of some sort for helping kids with autoimmune issues. I would love to talk with you and interview your family and child.Please let me know if you are interested via my email: eggwash1020@yahoo.comThanks!Marriah Berquist
    Anonymous 42789 Replies
    • October 29, 2009
    • 08:47 PM
    • 0
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  • Nikki,I just wanted to touch base with you before we know for sure if my 2 year old daughter has JRA. Our daughter has been ill since November starting with occasional hives and fever then moving to hives daily with fevers as high at 105 daily and then getting pain in her hips, legs and fingers. She has been hospitalized several times and had almost every test imaginable to determine the cause of all of this and every specialist keeps saying it is a rhuematologic issue probably JRA or SoJIA which is even more rare but the few times we have seen him he says other than her finger being grossly swollen he does not think it is. He saw her last hospitalization in early April and now that finger is red and painful when it was not before and other fingers are becoming swollen. She lost weight and was on an ng feeding tube for 3 or 4 weeks and has stopped developing and has actually regressed and stopped even trying to walk or even crawl. She already has Down syndrome so she is already behind but now this puts her so far back it is horrible. I feel your frustration and pain for your child and it is so hard to not know and even when you do find out and it is something you can not do anything about it is horrible. I will get back with you when we know for sure but if we go by the pediatrician and 4 other specialists and 2 other doctors it is either JRA or SoJIA. Good luck to you and keep your head upHello,i have been writing to all of you folks dealing with children and autoimmune disorders.I am 26, female, and have had my JRA( actually Still's Disease) under control for sometime now. I am trying to get money for a program that would help parents and children with their struggles and teach ways of managing their diseases combing allopathic and natural remedies. If you are interested in letting me speak with you and maybe interviewing for a fundraising video i would love to here from any of you!Thanks eggwash1020@yahoo.comMarriah Berquist
    Anonymous 42789 Replies
    • October 29, 2009
    • 08:55 PM
    • 0
    Flag this Response
  • I have a 4 year old daughter named Olivia. She was diagnosed withsystemic onset juvenile idiopathic arthritis by a pediatric Rheumy at ClevelandClinic, Dr Spalding, in April of this year. He however referred us to apediatric rheumy, Dr Kietz, at Children's Hospital of Pittsburgh because it iscloser to our home and he said we would be needing frequent visits. He said thathe would be glad to keep seeing us, but since it he is qute a distance from ourhome he would refer us to the doctor who he did his residency/fellowship under.We went to the dr. he referred us to and he tried to tell me that Dr. Spaldingdid not say she had sytemic arthritis that he just wanted a second opinion. I am100% positive that Dr Spalding did say she had it. It is now almost 8 monthssince all her problems have taken place and Dr. Kietz still say "If this is whatshe has." I do not understand what he is waiting for. He is not informative atall. Let me tell you my daughters story.In the middle of March this year we were sent by her cardiologist (she has abicuspid aortic valve) to Children's Hospital of Pittsburgh emergency room forhigh fevers she had nearly everyday for a month. Her pediatrician sort of keptblowing us off with it is just a virus. She had a sore throat along with it andkept telling me her belly felt sick. When a month went past and 4 trips to theped and still being told they think it is just a virus. She started to getredness arounf her elbows and wrists. It would wrap all the way aroun her armand was extremely hot to the touch and bright red even without a fever. I didtell the ped about this and they sort of just blew it off. Never had anexplanation for it. Then one day I came home from work and went to change herclother and when I lifted them off she had a spotty rash all over her body. Icalled the ped and took her in that evening. They told me they believed it wasfifths disease.The next day I call my daughters cardiologist because she still had fevers andit had been more than a month and the ped just wasn't doing anything. Thecardiologist was highly concerned that they hadn't done any testing on herbesides a strep test and urine test and told us to get her to the childrenshospital er immediately.The dr in the ER told us they thought she had Kawasaki disesase and admittedher. Once admitted the attending physician on the floor decided she did notthink it was Kawasaki disease, but just a virus and sent us home after 3 dayswithout treating her for the Kawasaki.I was not comfortable with the dx so I took her to Cleveland Clinic to apediatric rheumy who specialized in Kawasaki disease, just to get a 2nd opinionand make sure he didn't think thats what it was. He said that he couldnt ruleout the Kawasaki 100%, but that he was almost positive that what she has wassystemic arthritis. I guess he based this off of everything we told him had beengoing on as far as symptoms, and also the fact that she had had unexplainedfevers before and also a rash she would get while in the bathtub that woulddisappear shortly after she was out (this had been happening on and off forabout a year before all of this happened). She also had a rash under her armpitand on her face that he said was a telltale rash of systemic arthritis. So likeI said he sent us to Dr Kietz, the ped rheumy that was closer to our home.Dr Kietz saw us every couple of weeks for a while and had me keep a jounal offevers, rashes, and any other symptoms. My daughter was not having any jointpain or inflammation and had not had any throughout the whole illness. Dr Kiteztold us that he was not going to give her a dx as of yet and he was not leaningtolds her having it nor was he leaning away from her having it (that's realhelpful, huh?). He said he just wanted me to keep the journal and call and andupdate him every week. He said thart if she did have SOJIA that it could go inro remission and never return or it could go into remission and return in a fewmonths or a few years or when she was an adult and there was no way to tell whatavenue she would take. There were a couple of times in April that she would tellme her finger it and the knuckle would be bright red, but besides that no jointpain. Just fevers and rtashes. Toward the middle of April all of her symptomsdisappeared completely, so we quit calling the rheumy with updates and quitgoing in for visits. I was hoping it was all over and maybe it was nothing morethatn a virus.At the end of September I gave her a bath one evening and she got the rash whilein the bathtub and like previous times it disappeared about 20 minutes aftergetting out of the tub. A few days later she got a high fever 104.2 and had itevery night for 3 days. I did call and let the rheumy know and he called inNaprosyn and told me to give her that for the fevers. ( I didn't get it filled,just gave her Motrin because I am very leary of medication and she has allergiesto several different medicines so I just didn;'t feel it was necessary whn Icould just giver her Motrin.)She had rash with the fevers and continues to haverashes with baths. A few days after the fevers she told me her legs hurt andwhen i asked where she pointed behind her knees. This knee pain has gone oneveryday since then though she seems to complain about it more in the mornind orwhile shes walking. The next week she told me her arms hurts and when I told herto show me where she pointed not to the the actual elbow, but to the oppositepart inside you arm where it bends (like where you get your blood drawn from). Icalled and told the rheumy about this and he told me if it got to the pointwhere it was affecting the quality of her life to start giving her the Naprosynhe had called in and that if i started giving her the medicine then I shouldbring her in in 6 weeks. I just started giving her the Naprosyn this morning.She has cotinued complainign that her legs and arms hurt on a daily basis she tells me her arms and legs are "tired" alot also. If we go shoppingshe no longer wants to walk after a few minutes she starts complaining that herlegs hurt which isn't like her. Also, last week she was coloring a pivture andtold me her arm was really tired and she started coloring with her left hand. Icalled rheumy and told him this and he says that this is what he meant by thepain affecting her quality of life and to start her on the Naprosyn. That waslast week. Since i talked to him she has complained about pain in her shoulderand just the other days we were trick or trating and she said ow this hurtsreally bad and pointed to her hips. She has complained sevral times since thenabout her hips while walking. I finally gave in and defeated my medicine fearsand picked up the Naprosyn this morning. Doesn't seem to have helped, but thepackage insert says it may take up to 2 weeks for it to take effectAlso thought I might mention that she has had no swelling of her joints. She has also been complaining of a sore throat since all ofthis started at the end of September and it is not strep they tested her for it.(I read somewhere that the SOJIA causes sore throat)Also, I am not sure whether this has anything to do with SOJIA or not, but shehas been complaining of pain in her ribs and being out of breath for 10 daysnow. Took her to the ER at the advise of her cardiologist on Friday and they dida chest xray and EKG which both came back fine. They told me if she continues tocomplain of the shortness of breath for another week then that would beconcerning and I would need to take her back to the er.This is just all so confusing to me and sometimes I feel like when I call thedoctors office to tell them something is going on that they think I am crazy.It's just all frustrating and I want to know what is wrong with my baby. I wantto know why the dr won't diagnose her and if it is not SOJIA then what iscausing the problems.Hello, I am new to this forum and reaching out to anyone with a similar diagnosis. My 4 year old daughter was diagnosed with pauciarticular JRA (in our case just one joint) in December. we're on Naproxen and things seem to be heading in the right direction as far as the joint status. We have (for years) serious sleep issues with her (common for systemic from what I have learned but not for pauciarticular) and recently we have a random rash flaring up (again common for systemic but not pauciarticular). We have food allergies in our family (father) which could account for the sleep and rash issues, but I just thought I would ask anyone if they are experiencing these issues with their children recently diagnosed with JRA.Thank you for your time and comments
    Anonymous 42789 Replies
    • November 2, 2009
    • 01:50 AM
    • 0
    Flag this Response
  • I wanted to reply to this although my daughter has suffered from JRA for 3 yrs now. She is 6 and has Downs. Up until she was 3 yrs old she could walk and had no swelling or pain. When she turned 3 there shortly after, she started to have a gait in her walk and fingers swelling. We went to UNC Chapel Hill and had steroid injections into her ankles, to no avail. Since April of 08 she will not walk anymore. We are devastated, to say the least!! she goes to therapies and we have tried naproxen, motrin, tylenol and celebrex.....we REFUSE to move up to the higher risk medications such as Enbrell or methotrexate. They in themselves run risk of Luekemia, which is not a risk we are willing to take. I truly feel for you guys as I am there with you, with the confusion and hurt that you feel for your child. I will keep you guys in our thoughts and prayers and hope upon hope that the doctors can get it together for her............thanks for listening to our story while sharing your own. GOOD LUCK!!!!I have a 4 year old daughter named Olivia. She was diagnosed withsystemic onset juvenile idiopathic arthritis by a pediatric Rheumy at ClevelandClinic, Dr Spalding, in April of this year. He however referred us to apediatric rheumy, Dr Kietz, at Children's Hospital of Pittsburgh because it iscloser to our home and he said we would be needing frequent visits. He said thathe would be glad to keep seeing us, but since it he is qute a distance from ourhome he would refer us to the doctor who he did his residency/fellowship under.We went to the dr. he referred us to and he tried to tell me that Dr. Spaldingdid not say she had sytemic arthritis that he just wanted a second opinion. I am100% positive that Dr Spalding did say she had it. It is now almost 8 monthssince all her problems have taken place and Dr. Kietz still say "If this is whatshe has." I do not understand what he is waiting for. He is not informative atall. Let me tell you my daughters story.In the middle of March this year we were sent by her cardiologist (she has abicuspid aortic valve) to Children's Hospital of Pittsburgh emergency room forhigh fevers she had nearly everyday for a month. Her pediatrician sort of keptblowing us off with it is just a virus. She had a sore throat along with it andkept telling me her belly felt sick. When a month went past and 4 trips to theped and still being told they think it is just a virus. She started to getredness arounf her elbows and wrists. It would wrap all the way aroun her armand was extremely hot to the touch and bright red even without a fever. I didtell the ped about this and they sort of just blew it off. Never had anexplanation for it. Then one day I came home from work and went to change herclother and when I lifted them off she had a spotty rash all over her body. Icalled the ped and took her in that evening. They told me they believed it wasfifths disease.The next day I call my daughters cardiologist because she still had fevers andit had been more than a month and the ped just wasn't doing anything. Thecardiologist was highly concerned that they hadn't done any testing on herbesides a strep test and urine test and told us to get her to the childrenshospital er immediately.The dr in the ER told us they thought she had Kawasaki disesase and admittedher. Once admitted the attending physician on the floor decided she did notthink it was Kawasaki disease, but just a virus and sent us home after 3 dayswithout treating her for the Kawasaki.I was not comfortable with the dx so I took her to Cleveland Clinic to apediatric rheumy who specialized in Kawasaki disease, just to get a 2nd opinionand make sure he didn't think thats what it was. He said that he couldnt ruleout the Kawasaki 100%, but that he was almost positive that what she has wassystemic arthritis. I guess he based this off of everything we told him had beengoing on as far as symptoms, and also the fact that she had had unexplainedfevers before and also a rash she would get while in the bathtub that woulddisappear shortly after she was out (this had been happening on and off forabout a year before all of this happened). She also had a rash under her armpitand on her face that he said was a telltale rash of systemic arthritis. So likeI said he sent us to Dr Kietz, the ped rheumy that was closer to our home.Dr Kietz saw us every couple of weeks for a while and had me keep a jounal offevers, rashes, and any other symptoms. My daughter was not having any jointpain or inflammation and had not had any throughout the whole illness. Dr Kiteztold us that he was not going to give her a dx as of yet and he was not leaningtolds her having it nor was he leaning away from her having it (that's realhelpful, huh?). He said he just wanted me to keep the journal and call and andupdate him every week. He said thart if she did have SOJIA that it could go inro remission and never return or it could go into remission and return in a fewmonths or a few years or when she was an adult and there was no way to tell whatavenue she would take. There were a couple of times in April that she would tellme her finger it and the knuckle would be bright red, but besides that no jointpain. Just fevers and rtashes. Toward the middle of April all of her symptomsdisappeared completely, so we quit calling the rheumy with updates and quitgoing in for visits. I was hoping it was all over and maybe it was nothing morethatn a virus.At the end of September I gave her a bath one evening and she got the rash whilein the bathtub and like previous times it disappeared about 20 minutes aftergetting out of the tub. A few days later she got a high fever 104.2 and had itevery night for 3 days. I did call and let the rheumy know and he called inNaprosyn and told me to give her that for the fevers. ( I didn't get it filled,just gave her Motrin because I am very leary of medication and she has allergiesto several different medicines so I just didn;'t feel it was necessary whn Icould just giver her Motrin.)She had rash with the fevers and continues to haverashes with baths. A few days after the fevers she told me her legs hurt andwhen i asked where she pointed behind her knees. This knee pain has gone oneveryday since then though she seems to complain about it more in the mornind orwhile shes walking. The next week she told me her arms hurts and when I told herto show me where she pointed not to the the actual elbow, but to the oppositepart inside you arm where it bends (like where you get your blood drawn from). Icalled and told the rheumy about this and he told me if it got to the pointwhere it was affecting the quality of her life to start giving her the Naprosynhe had called in and that if i started giving her the medicine then I shouldbring her in in 6 weeks. I just started giving her the Naprosyn this morning.She has cotinued complainign that her legs and arms hurt on a daily basis she tells me her arms and legs are "tired" alot also. If we go shoppingshe no longer wants to walk after a few minutes she starts complaining that herlegs hurt which isn't like her. Also, last week she was coloring a pivture andtold me her arm was really tired and she started coloring with her left hand. Icalled rheumy and told him this and he says that this is what he meant by thepain affecting her quality of life and to start her on the Naprosyn. That waslast week. Since i talked to him she has complained about pain in her shoulderand just the other days we were trick or trating and she said ow this hurtsreally bad and pointed to her hips. She has complained sevral times since thenabout her hips while walking. I finally gave in and defeated my medicine fearsand picked up the Naprosyn this morning. Doesn't seem to have helped, but thepackage insert says it may take up to 2 weeks for it to take effectAlso thought I might mention that she has had no swelling of her joints. She has also been complaining of a sore throat since all ofthis started at the end of September and it is not strep they tested her for it.(I read somewhere that the SOJIA causes sore throat)Also, I am not sure whether this has anything to do with SOJIA or not, but shehas been complaining of pain in her ribs and being out of breath for 10 daysnow. Took her to the ER at the advise of her cardiologist on Friday and they dida chest xray and EKG which both came back fine. They told me if she continues tocomplain of the shortness of breath for another week then that would beconcerning and I would need to take her back to the er.This is just all so confusing to me and sometimes I feel like when I call thedoctors office to tell them something is going on that they think I am crazy.It's just all frustrating and I want to know what is wrong with my baby. I wantto know why the dr won't diagnose her and if it is not SOJIA then what iscausing the problems.
    Anonymous 42789 Replies
    • November 17, 2009
    • 11:37 PM
    • 0
    Flag this Response
  • I wanted to reply since your daughter's sympt are very similar to my son's..After his 8th birthday the rash showed up on the inner thighs and under arms. I assumed that it was either heat rash/fifths. The day after the rash he was extemely sore in the morning and could barely walk. Still assumed virus. 3 days after the pain he began the high 103.5-104 fevers. I took him to the ped and they did a throat culture since they felt the rash was a "strep rash". The culture was neg and once again..assumed it was viral. After 7 days of Motrin- fevers still staying between 103-104 we took him to Children's Hospital of Pittsburgh. They did alot of bloodwork and detrmined that his wbc count was high and also his sed rate (inflammation)was high. Still could not rule out a virus until 2 weeks went past. Luckily the ER DR called the following evening to inquire on my son and I told her he still had the rash and fever. SHe got me in with a WONDERFUL rheumatologist in Children's. He believed that the rash was systemic JRA but he advised that they will not dx JRA until 6 weeks of symptoms or if he started getting visible arthritis. Other than the leg pains he mainly complained about his shoulder. The doctor rx Naprosyn and it took effect quickly. WIthin a week he was more active &2 weeks he was back to normal-with the excpetion of the shoulder pain and rash. We re did the blood work and the sed rate and wbc did come down; but was still high. He then suggested an MRI of his shoulder to see if we could find arthritis. They did find arthritis is my son's shoulder and it is only until now that we finally have the dX of Systemic Juvenile Arthritis. We were fortunate in getting the dx after 6 weeks due to there is no specific test for arthritis. But my sons rheum was very proactive. We are still in th process of regulating his meds to try to get the inflam down to normal; but other than my son's shoulder you would not realize he was sick. The Naproxyn has worked well for him and just hoping it helpded you daughter. Best Wishes to you and your family
    Anonymous 42789 Replies Flag this Response
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