Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 How old is Devon? We've dealt with JRA so far 8 months, and our daughter is almost 3. She got a swollen knee that never (til a recent injection) went down. She has Pauciarticular JRA. I'm wondering how long it'll last. Each " case " is so different. She's a very happy girl, though. I do worry about her healthy growth and being able to keep up with her peers, but so far she's doing fine. She has a lift in one shoe to even out her leg lengths( the swollen knee causes that leg to grow faster so the lift is in the opposite shoe) I'm pulling for you all. Devon's appointment Devon had her appointment with the Ped today. I took all the info provided from this group, armed for a fight with the doc. The fight never happened. He agrees that she has JRA. He examined her joints that she was complaining of this weekend. She said her elbow, and right knee were good, but when he touched her left knee, she cried out. He told us not to treat her with anything right now, except when she is flaring. We are on an emergency list to go to the nearest children's hospital in Halifax. The doc said they will do an MRI, and remove some synovial fluid, and blood work to check to see how far the disease has progressed. She will also see a opthamologist, and dermatologist, and from there they will decide what treatment needs to be done. He told us to keep her away from anyone who is sick, as any illness could cause the disease to progress very fast. Great. I asked how long it will take to get the appointment in Halifax, and he said hopefully it won't be longer than 6 months! I am hoping that they will call in the next week or so, but I am not holding my breathe. Until then I research, research, research, and pray for no more flares. I am reading all your posts to the group, and trying to get to know everyone. Pardon me for not replying, but to be honest this is all so new, and frightening, that I don't really know what to say. Kirsty ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/477 - Release Date: 10/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 My daughter has had systemic jra for 3 years now. Her story was a little different than your daughters, b/c at onset things were bad and rapidly got worse. Although, we have looked back and it seems like from 18 months she had fevers in the night and would sometimes wake up in the morning and cry and cry. At the age of three, the fevers and rashes and joint pain started and progressively got worse and worse until we got things under control with meds. Have your daughter's episodes gotten closer together or worse each time? Would it help to call the Halifax clinic and speak with someone that could get your appt moved up? Take care. Sophie 's mom, systemic jra, age 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 Hi Kristy: I'm glad Devon got a diagnosis, but I'm perplexed by some of the things the doctor told you. If she cried out because her knee hurt and he wants to do an MRI and remove fluid, why would he not treat her with anything? Those things certainly sound like she's in a flare to me. Did he tell you what the treatment will consist of? Good luck and keep us posted. Beth (Hannah, 10, unspecified arthritis; asthma; gerd) Kirsty <mccarron@...> wrote: Devon had her appointment with the Ped today. I took all the info provided from this group, armed for a fight with the doc. The fight never happened. He agrees that she has JRA. He examined her joints that she was complaining of this weekend. She said her elbow, and right knee were good, but when he touched her left knee, she cried out. He told us not to treat her with anything right now, except when she is flaring. We are on an emergency list to go to the nearest children's hospital in Halifax. The doc said they will do an MRI, and remove some synovial fluid, and blood work to check to see how far the disease has progressed. She will also see a opthamologist, and dermatologist, and from there they will decide what treatment needs to be done. He told us to keep her away from anyone who is sick, as any illness could cause the disease to progress very fast. Great. I asked how long it will take to get the appointment in Halifax, and he said hopefully it won't be longer than 6 months! I am hoping that they will call in the next week or so, but I am not holding my breathe. Until then I research, research, research, and pray for no more flares. I am reading all your posts to the group, and trying to get to know everyone. Pardon me for not replying, but to be honest this is all so new, and frightening, that I don't really know what to say. Kirsty ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/477 - Release Date: 10/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 I don't think they have got closer together. I do believe they happen more often in the fall though. I think during the whole summer, she only had 3 episodes. Now, we just finished up the second in two weeks. Unfortunately you can't do anything in moving up appointments. My son, (Devon's twin) was to see an endo, and it took forever, and my oldest has pulmonary stenosis, and it took 4 months to see the cardiologist, and that was with pull from my uncle who used to be Chief of Staff at UCLA. It is all very frustrating. Although we don't pay for the medical care, it takes forever to be seen. Kirsty Re: Devon's appointment My daughter has had systemic jra for 3 years now. Her story was a little different than your daughters, b/c at onset things were bad and rapidly got worse. Although, we have looked back and it seems like from 18 months she had fevers in the night and would sometimes wake up in the morning and cry and cry. At the age of three, the fevers and rashes and joint pain started and progressively got worse and worse until we got things under control with meds. Have your daughter's episodes gotten closer together or worse each time? Would it help to call the Halifax clinic and speak with someone that could get your appt moved up? Take care. Sophie 's mom, systemic jra, age 6 ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/477 - Release Date: 10/16/2006 ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/477 - Release Date: 10/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 He feels her knee is sore because she is just coming out of an episode. He said that we could give her the ibuprofen, but didn't want to start/change anything until we know how far the disease has progressed. He told us a number of different meds available, but again, it would depend on how bad she is before deciding which one is good for Devon. When she doesn't have the fevers, she is fine. I understand that doesn't mean things aren't happening, but for right now, we are going to wait. In the spring, she doesn't seem to have any flares at all, do you know how the seasons affect this? Kirsty Re: Devon's appointment Hi Kristy: I'm glad Devon got a diagnosis, but I'm perplexed by some of the things the doctor told you. If she cried out because her knee hurt and he wants to do an MRI and remove fluid, why would he not treat her with anything? Those things certainly sound like she's in a flare to me. Did he tell you what the treatment will consist of? Good luck and keep us posted. Beth (Hannah, 10, unspecified arthritis; asthma; gerd) Kirsty <mccarron@...> wrote: Devon had her appointment with the Ped today. I took all the info provided from this group, armed for a fight with the doc. The fight never happened. He agrees that she has JRA. He examined her joints that she was complaining of this weekend. She said her elbow, and right knee were good, but when he touched her left knee, she cried out. He told us not to treat her with anything right now, except when she is flaring. We are on an emergency list to go to the nearest children's hospital in Halifax. The doc said they will do an MRI, and remove some synovial fluid, and blood work to check to see how far the disease has progressed. She will also see a opthamologist, and dermatologist, and from there they will decide what treatment needs to be done. He told us to keep her away from anyone who is sick, as any illness could cause the disease to progress very fast. Great. I asked how long it will take to get the appointment in Halifax, and he said hopefully it won't be longer than 6 months! I am hoping that they will call in the next week or so, but I am not holding my breathe. Until then I research, research, research, and pray for no more flares. I am reading all your posts to the group, and trying to get to know everyone. Pardon me for not replying, but to be honest this is all so new, and frightening, that I don't really know what to say. Kirsty ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/477 - Release Date: 10/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2006 Report Share Posted October 18, 2006 I can tell you that weather really plays a roll with Hannah's pain. When it is really hot & humid or cool and damp, she tends to have more pain than when its just a nice pleasant day ( We live in Wisconsin). We have yet to go through fall and winter with her arthritis, so not sure how that will affect her. Beth (Hannah, 10, unspecified arthritis; asthma; gerd) Kirsty <mccarron@...> wrote: He feels her knee is sore because she is just coming out of an episode. He said that we could give her the ibuprofen, but didn't want to start/change anything until we know how far the disease has progressed. He told us a number of different meds available, but again, it would depend on how bad she is before deciding which one is good for Devon. When she doesn't have the fevers, she is fine. I understand that doesn't mean things aren't happening, but for right now, we are going to wait. In the spring, she doesn't seem to have any flares at all, do you know how the seasons affect this? Kirsty Re: Devon's appointment Hi Kristy: I'm glad Devon got a diagnosis, but I'm perplexed by some of the things the doctor told you. If she cried out because her knee hurt and he wants to do an MRI and remove fluid, why would he not treat her with anything? Those things certainly sound like she's in a flare to me. Did he tell you what the treatment will consist of? Good luck and keep us posted. Beth (Hannah, 10, unspecified arthritis; asthma; gerd) Kirsty <mccarron@...> wrote: Devon had her appointment with the Ped today. I took all the info provided from this group, armed for a fight with the doc. The fight never happened. He agrees that she has JRA. He examined her joints that she was complaining of this weekend. She said her elbow, and right knee were good, but when he touched her left knee, she cried out. He told us not to treat her with anything right now, except when she is flaring. We are on an emergency list to go to the nearest children's hospital in Halifax. The doc said they will do an MRI, and remove some synovial fluid, and blood work to check to see how far the disease has progressed. She will also see a opthamologist, and dermatologist, and from there they will decide what treatment needs to be done. He told us to keep her away from anyone who is sick, as any illness could cause the disease to progress very fast. Great. I asked how long it will take to get the appointment in Halifax, and he said hopefully it won't be longer than 6 months! I am hoping that they will call in the next week or so, but I am not holding my breathe. Until then I research, research, research, and pray for no more flares. I am reading all your posts to the group, and trying to get to know everyone. Pardon me for not replying, but to be honest this is all so new, and frightening, that I don't really know what to say. Kirsty ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/477 - Release Date: 10/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Hi, Devon just turned 8. This whole disease is very new to us. My problem right now, is that I am looking years down the road, instead of what is happening today, right now. Luckily, Devon's knees go back to normal when she doesn't have the fever. I find it very interesting reading everyones stories about their kids, but also very sad knowing that their are so many others suffering. Kirsty Devon's appointment Devon had her appointment with the Ped today. I took all the info provided from this group, armed for a fight with the doc. The fight never happened. He agrees that she has JRA. He examined her joints that she was complaining of this weekend. She said her elbow, and right knee were good, but when he touched her left knee, she cried out. He told us not to treat her with anything right now, except when she is flaring. We are on an emergency list to go to the nearest children's hospital in Halifax. The doc said they will do an MRI, and remove some synovial fluid, and blood work to check to see how far the disease has progressed. She will also see a opthamologist, and dermatologist, and from there they will decide what treatment needs to be done. He told us to keep her away from anyone who is sick, as any illness could cause the disease to progress very fast. Great. I asked how long it will take to get the appointment in Halifax, and he said hopefully it won't be longer than 6 months! I am hoping that they will call in the next week or so, but I am not holding my breathe. Until then I research, research, research, and pray for no more flares. I am reading all your posts to the group, and trying to get to know everyone. Pardon me for not replying, but to be honest this is all so new, and frightening, that I don't really know what to say. Kirsty ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/477 - Release Date: 10/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Kirsty, I remember going through the same things as you when first got sick. I was so worried about her life as a teen, career in adulthood, permanent disability and on and on. A lot of what you will read on the internet is dated. There are so many recent treatments that offer so much hope to systemics. It is very possible your daughter's life will be close to normal. My daughter has what I would consider a severe case of systemic jra that is controlled very well right now with medications. There have been some very rough times, I won't lie, but all in all she has done very well in the last three years. Mostly because of the new biological drugs that are now available. Keep your chin up. Are there any adult rheumatologists that could see Devon earlier? Take care. Sophie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2006 Report Share Posted October 19, 2006 Well, that definitely makes sense. Never really thought of it like that. Kirsty Re: Devon's appointment Hi Kristy: I'm glad Devon got a diagnosis, but I'm perplexed by some of the things the doctor told you. If she cried out because her knee hurt and he wants to do an MRI and remove fluid, why would he not treat her with anything? Those things certainly sound like she's in a flare to me. Did he tell you what the treatment will consist of? Good luck and keep us posted. Beth (Hannah, 10, unspecified arthritis; asthma; gerd) Kirsty <mccarron@...> wrote: Devon had her appointment with the Ped today. I took all the info provided from this group, armed for a fight with the doc. The fight never happened. He agrees that she has JRA. He examined her joints that she was complaining of this weekend. She said her elbow, and right knee were good, but when he touched her left knee, she cried out. He told us not to treat her with anything right now, except when she is flaring. We are on an emergency list to go to the nearest children's hospital in Halifax. The doc said they will do an MRI, and remove some synovial fluid, and blood work to check to see how far the disease has progressed. She will also see a opthamologist, and dermatologist, and from there they will decide what treatment needs to be done. He told us to keep her away from anyone who is sick, as any illness could cause the disease to progress very fast. Great. I asked how long it will take to get the appointment in Halifax, and he said hopefully it won't be longer than 6 months! I am hoping that they will call in the next week or so, but I am not holding my breathe. Until then I research, research, research, and pray for no more flares. I am reading all your posts to the group, and trying to get to know everyone. Pardon me for not replying, but to be honest this is all so new, and frightening, that I don't really know what to say. Kirsty ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.4/477 - Release Date: 10/16/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Does it ever stop? There aren't any Rheumatologists that we can see right now. I am trying to get a hold of a woman at my work, whose grandson was just diagnosed about a month ago. See if she has any suggestions for local treatment. Unfortunately she has been out with the flu. Kirsty Re: Devon's appointment Kirsty, I remember going through the same things as you when first got sick. I was so worried about her life as a teen, career in adulthood, permanent disability and on and on. A lot of what you will read on the internet is dated. There are so many recent treatments that offer so much hope to systemics. It is very possible your daughter's life will be close to normal. My daughter has what I would consider a severe case of systemic jra that is controlled very well right now with medications. There have been some very rough times, I won't lie, but all in all she has done very well in the last three years. Mostly because of the new biological drugs that are now available. Keep your chin up. Are there any adult rheumatologists that could see Devon earlier? Take care. Sophie ------------------------------------------------------------------------------ No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.6/486 - Release Date: 10/19/2006 ---------- No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.408 / Virus Database: 268.13.8/489 - Release Date: 10/20/2006 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 If you are asking if the worry ever stops, for me it hasn't. It is much worse when isn't feeling well, but I still worry when she is well that she will flare up. The worry was also a lot worse in the beginning when we didn't know what to expect. Do you give Devon motrin during flares? How often are the flares? Is she perfectly normal when she isn't having an episode? The only person I know in our town that had JRA is a girl that was a couple years ahead of me in school. I remember she had a really rough time. I do not know anyone in my area that has JRA. I asked our pediatrician and he said he knows a couple that had it as children but have since grown out of it. That is why this discussion board is wonderful! Take care and keep us posted about Devon. Sophie > > Does it ever stop? > There aren't any Rheumatologists that we can see right now. I am trying to get a hold of a woman at my work, whose grandson was just diagnosed about a month ago. See if she has any suggestions for local treatment. Unfortunately she has been out with the flu. > Kirsty > Re: Devon's appointment > > > Kirsty, > I remember going through the same things as you when first got > sick. I was so worried about her life as a teen, career in adulthood, > permanent disability and on and on. A lot of what you will read on the > internet is dated. There are so many recent treatments that offer so > much hope to systemics. It is very possible your daughter's life will > be close to normal. > > My daughter has what I would consider a severe case of systemic jra > that is controlled very well right now with medications. There have > been some very rough times, I won't lie, but all in all she has done > very well in the last three years. Mostly because of the new > biological drugs that are now available. > > Keep your chin up. Are there any adult rheumatologists that could see > Devon earlier? > > Take care. > Sophie > > > > > > > ------------------------------------------------------------------- ----------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.408 / Virus Database: 268.13.6/486 - Release Date: 10/19/2006 > > ---------- > > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.408 / Virus Database: 268.13.8/489 - Release Date: 10/20/2006 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2006 Report Share Posted October 24, 2006 I have been giving her the motrin during flares only. As to how often, I am not sure. She had probably 3 -4 between the end of June and end of August. Then September was good, and October she has had 2. Last winter, I would guess about 6, yet in the spring, I don't remember any. Kirsty Re: Devon's appointment > > > Kirsty, > I remember going through the same things as you when first got > sick. I was so worried about her life as a teen, career in adulthood, > permanent disability and on and on. A lot of what you will read on the > internet is dated. There are so many recent treatments that offer so > much hope to systemics. It is very possible your daughter's life will > be close to normal. > > My daughter has what I would consider a severe case of systemic jra > that is controlled very well right now with medications. There have > been some very rough times, I won't lie, but all in all she has done > very well in the last three years. Mostly because of the new > biological drugs that are now available. > > Keep your chin up. Are there any adult rheumatologists that could see > Devon earlier? > > Take care. > Sophie > > > > > > > ---------------------------------------------------------- ----------- > > > No virus found in this incoming message. > Checked by AVG Free Edition. > Version: 7.1.408 / Virus Database: 268.13.6/486 - Release Date: 10/19/2006 > > ---------- > > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.408 / Virus Database: 268.13.8/489 - Release Date: 10/20/2006 > > > Quote Link to comment Share on other sites More sharing options...
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