Guest guest Posted May 25, 2006 Report Share Posted May 25, 2006 I'm sorry you didn't get any answers. I sent you an email, but I am not sure if it went thru or not. Can you let me know if you didn't get it? Good luck at the cardiologist. I hope that that turns out to not be anything serious. > > > > > > and do sound a lot alike! 's gets two different > > types of > > > rashes. He either gets these dry, red scaly patches - which he > > mostly gets in > > > the winter. He can also get these all over rashes that are > > little red > > > splotchy dots and those will be all over his chest, back arms > and > > legs. He gets > > > those more when it is hot but I think in December he had one > like > > that at the > > > time his knee was flaring. definitely gets swelling and > he > > gets what > > > the orthapaedic doctor called a contracture where he can't > > straighten out his > > > leg at all. He can bend it fine but can't fully straighten it > > out. The MRI > > > and his x-rays have shown fluid on his knee. His sed rate has > > been normal > > > which is why his pediatrician doesn't think it is JRA but the > > orthopaedic doctor > > > said that having a normal sed rate doesn't mean much. I can't > > relate any of > > > the flares to a viral illness but I know you can have viruses > > without > > > symptoms (my daughter had a virus once that made her liver > > enzymes go extremely > > > high but she seemed perfectly healthy - no symptoms - not > related > > to her liver > > > disease). I just find everything very confusing so I can't wait > > to hear what > > > the doctor says this Tuesday. What kind of tests did they do on > > when he > > > went to see the Rheumatologist the first time? I know it will > > involve a lot > > > of blood tests but is there anything else? > > > > > > Carolyn > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 The Rheumy doesn't think it is JRA because the symptoms do not last at least six weeks I find this a little bit strange. Am I the only one? From the very beginning in 1970 my symptoms did not last 6 weeks. They would surface and last a day to a week then disappear but reappear. The reappearance may have been daily, weekly, monthly, and at times yearly...Maybe I dont have JRA???crazy disease, who knows for sure......... Hugs and smiles to all! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 In a message dated 5/26/2006 10:50:40 A.M. Eastern Daylight Time, CBBECB@... writes: I am still a little bit skeptical about the six week thing too. My hasn't had any " episodes " that have lasted 6 weeks either...maybe 5-6 days tops... (, 4, JRA, AnkSpon) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Carolyn, I am a 36 year vet to JRA and what started in one knee in 1970 is now every joint in my body. Often times, even JRA can be very mild. If this is what he has let us hope he has the mildest of mild......keep us posted ok. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Hope this is helpful...Donna _Questions and Answers About Juvenile Rheumatoid Arthritis_ (http://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm) or _http://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm_ (http://www.niams.nih.gov/hi/topics/juvenile_arthritis/juvarthr.htm) and _Juvenile Rheumatoid Arthritis_ (http://kidshealth.org/parent/medical/arthritis/jra.html) or _http://kidshealth.org/parent/medical/arthritis/jra.html_ (http://kidshealth.org/parent/medical/arthritis/jra.html) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 It doesen't look like the e-mail went through so you may want to try again. We still haven't gotten any blood test results - I'm really interested to see the results of those. Carolyn Re: New to this board I'm sorry you didn't get any answers. I sent you an email, but I am not sure if it went thru or not. Can you let me know if you didn't get it? Good luck at the cardiologist. I hope that that turns out to not be anything serious. > > > > > > and do sound a lot alike! 's gets two different > > types of > > > rashes. He either gets these dry, red scaly patches - which he > > mostly gets in > > > the winter. He can also get these all over rashes that are > > little red > > > splotchy dots and those will be all over his chest, back arms > and > > legs. He gets > > > those more when it is hot but I think in December he had one > like > > that at the > > > time his knee was flaring. definitely gets swelling and > he > > gets what > > > the orthapaedic doctor called a contracture where he can't > > straighten out his > > > leg at all. He can bend it fine but can't fully straighten it > > out. The MRI > > > and his x-rays have shown fluid on his knee. His sed rate has > > been normal > > > which is why his pediatrician doesn't think it is JRA but the > > orthopaedic doctor > > > said that having a normal sed rate doesn't mean much. I can't > > relate any of > > > the flares to a viral illness but I know you can have viruses > > without > > > symptoms (my daughter had a virus once that made her liver > > enzymes go extremely > > > high but she seemed perfectly healthy - no symptoms - not > related > > to her liver > > > disease). I just find everything very confusing so I can't wait > > to hear what > > > the doctor says this Tuesday. What kind of tests did they do on > > when he > > > went to see the Rheumatologist the first time? I know it will > > involve a lot > > > of blood tests but is there anything else? > > > > > > Carolyn > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Donna, I am still a little bit skeptical about the six week thing too. I guess only time will tell. Maybe it is not JRA but some other form of arthritis? Or maybe a milder form of JRA? I just don't know what to think right now. In your case how many joints are affected? With is just his left knee. Really weird! Carolyn > > > > The Rheumy doesn't think it is JRA because the symptoms do not last at > least six weeks > I find this a little bit strange. Am I the only one? From the very beginning > in 1970 my symptoms did not last 6 weeks. They would surface and last a day > to a week then disappear but reappear. The reappearance may have been daily, > weekly, monthly, and at times yearly...Maybe I dont have JRA??? crazy disease, > who knows for sure......... > Hugs and smiles to all! > Donna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 I sent it again. Hopefully it'll go thru this time. I hope the blood test results will be helpful. Did they say how long they would take? They ran a ton of tests on and said everything looked good. > > > > > > > > and do sound a lot alike! 's gets two > different > > > types of > > > > rashes. He either gets these dry, red scaly patches - which > he > > > mostly gets in > > > > the winter. He can also get these all over rashes that are > > > little red > > > > splotchy dots and those will be all over his chest, back arms > > and > > > legs. He gets > > > > those more when it is hot but I think in December he had one > > like > > > that at the > > > > time his knee was flaring. definitely gets swelling > and > > he > > > gets what > > > > the orthapaedic doctor called a contracture where he can't > > > straighten out his > > > > leg at all. He can bend it fine but can't fully straighten > it > > > out. The MRI > > > > and his x-rays have shown fluid on his knee. His sed rate > has > > > been normal > > > > which is why his pediatrician doesn't think it is JRA but the > > > orthopaedic doctor > > > > said that having a normal sed rate doesn't mean much. I > can't > > > relate any of > > > > the flares to a viral illness but I know you can have viruses > > > without > > > > symptoms (my daughter had a virus once that made her liver > > > enzymes go extremely > > > > high but she seemed perfectly healthy - no symptoms - not > > related > > > to her liver > > > > disease). I just find everything very confusing so I can't > wait > > > to hear what > > > > the doctor says this Tuesday. What kind of tests did they do > on > > > when he > > > > went to see the Rheumatologist the first time? I know it > will > > > involve a lot > > > > of blood tests but is there anything else? > > > > > > > > Carolyn > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 This whole process confuses me more and more everyday. Hannah has been to rheumy twice since the start of April and even though most of her labs came back " normal " , she has diagnosed her with anything despite the classic symptoms she has. I was told yesterday by her orthopedic doc that ALL of them were borderline normal. Since her knee injury 2 weeks ago turned out be a chipped femur, the ortho doc called yesterday and wants to re-run a bunch of the labs the rheumy did 2 moths ago. Now what are they looking for? Hannah has been through so much already. I have to believe she some sort of arthritis. What other types to kids get besides JRA. I am soo confused!! Beth (Hannah, age 9, no diagnosis) Happy thoughts...Be well cbriggs39 <CBBECB@...> wrote: Donna, I am still a little bit skeptical about the six week thing too. I guess only time will tell. Maybe it is not JRA but some other form of arthritis? Or maybe a milder form of JRA? I just don't know what to think right now. In your case how many joints are affected? With is just his left knee. Really weird! Carolyn > > > > The Rheumy doesn't think it is JRA because the symptoms do not last at > least six weeks > I find this a little bit strange. Am I the only one? From the very beginning > in 1970 my symptoms did not last 6 weeks. They would surface and last a day > to a week then disappear but reappear. The reappearance may have been daily, > weekly, monthly, and at times yearly...Maybe I dont have JRA??? crazy disease, > who knows for sure......... > Hugs and smiles to all! > Donna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Children can get all types of arthritis, even occasionally osteo (which is usually what older people get - the wearing down over time of joints). It is classified as juvenile by the age that the symptoms appear or diagnosis is made. But JRA is not the same as RA. They are 2 different diseases. JRA is now more often classified as JIA, juvenile idiopathic arthritis. I am not sure what they are looking for with the blood work, except perhaps to see if the SED rate has changed. Kids who are on meds do get a lot of blood work but that is usually to make sure the liver levels are ok, and to check the SED rate or wbc or things like that. Again, there is no blood test that proves or disproves arthritis. Drs usually go by symptoms. It can take a long time to get a proper diagnosis sometimes. I hope answers come to you all soon, Michele ( 19, spondilitis) Re: Re: New to this board This whole process confuses me more and more everyday. Hannah has been to rheumy twice since the start of April and even though most of her labs came back " normal " , she has diagnosed her with anything despite the classic symptoms she has. I was told yesterday by her orthopedic doc that ALL of them were borderline normal. Since her knee injury 2 weeks ago turned out be a chipped femur, the ortho doc called yesterday and wants to re-run a bunch of the labs the rheumy did 2 moths ago. Now what are they looking for? Hannah has been through so much already. I have to believe she some sort of arthritis. What other types to kids get besides JRA. I am soo confused!! Beth (Hannah, age 9, no diagnosis) Happy thoughts...Be well cbriggs39 <CBBECB@...> wrote: Donna, I am still a little bit skeptical about the six week thing too. I guess only time will tell. Maybe it is not JRA but some other form of arthritis? Or maybe a milder form of JRA? I just don't know what to think right now. In your case how many joints are affected? With is just his left knee. Really weird! Carolyn > > > > The Rheumy doesn't think it is JRA because the symptoms do not last at > least six weeks > I find this a little bit strange. Am I the only one? From the very beginning > in 1970 my symptoms did not last 6 weeks. They would surface and last a day > to a week then disappear but reappear. The reappearance may have been daily, > weekly, monthly, and at times yearly...Maybe I dont have JRA??? crazy disease, > who knows for sure......... > Hugs and smiles to all! > Donna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 If the rheumy is diagnosing JRA on the basis of swelling only, Rob would never have a diagnosis. Rob's knees swell minimally. He was diagnosed on the basis of fluid in the hip joints on MRI. Has your son had an MRI of the offending knee? and Rob 17 Spondy On Fri, 26 May 2006 09:42:23 EDT ajaoky@... writes: The Rheumy doesn't think it is JRA because the symptoms do not last at least six weeks I find this a little bit strange. Am I the only one? From the very beginning in 1970 my symptoms did not last 6 weeks. They would surface and last a day to a week then disappear but reappear. The reappearance may have been daily, weekly, monthly, and at times yearly...Maybe I dont have JRA???crazy disease, who knows for sure......... Hugs and smiles to all! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Wow, everyone is confusing me even more. My son is in a very similar situation to the original poster. For him at least, they don't think it is JRA. He is completely fine for 2-3 months, then one day his knee will swell up and start hurting. The doctors who have seen him (not the pediatric rheumy) have said they felt fluid on the knee during those times. But it only last 4-7 days and then he is fine. We haven't made it to the pediatric rheumy during an episode yet, but we have had him tested between episodes and there is no swelling, no sign of arthritis, blood tests are completely ok, etc. When we did visit the rheumy he agreed that he was having episodes of arthritis, but based on his findings, he couldn't diagnose him with JRA. But you guys are saying that it still could be JRA? How do you treat something like that? Would you give him daily medicine during the 2-3 months when he is completely fine? That just makes me uneasy. Our doctor just thinks when he is already sick (virus, strep, etc) it causes this reaction in his knee. What do you think? We know for a fact the last time his knee flared up, he tested positive for strep although he didn't have any other symptoms. This seemed to validate the doctors explanation to us .. > > If the rheumy is diagnosing JRA on the basis of swelling only, Rob would > never have a diagnosis. Rob's knees swell minimally. He was diagnosed on > the basis of fluid in the hip joints on MRI. Has your son had an MRI of > the offending knee? > and Rob 17 Spondy > > On Fri, 26 May 2006 09:42:23 EDT ajaoky@... writes: > > > The Rheumy doesn't think it is JRA because the symptoms do not last at > least six weeks > I find this a little bit strange. Am I the only one? From the very > beginning > in 1970 my symptoms did not last 6 weeks. They would surface and last a > day > to a week then disappear but reappear. The reappearance may have been > daily, > weekly, monthly, and at times yearly...Maybe I dont have JRA??? crazy > disease, > who knows for sure......... > Hugs and smiles to all! > Donna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 My son had an MRI of his knee and also X-rays and all have shown fluid on his knee. The rheumy said that just because there is fluid doesn't mean there is inflammation. He said he would have to tap the knee and test the fluid to be able to tell. > > If the rheumy is diagnosing JRA on the basis of swelling only, Rob would > never have a diagnosis. Rob's knees swell minimally. He was diagnosed on > the basis of fluid in the hip joints on MRI. Has your son had an MRI of > the offending knee? > and Rob 17 Spondy > > On Fri, 26 May 2006 09:42:23 EDT ajaoky@... writes: > > > The Rheumy doesn't think it is JRA because the symptoms do not last at > least six weeks > I find this a little bit strange. Am I the only one? From the very > beginning > in 1970 my symptoms did not last 6 weeks. They would surface and last a > day > to a week then disappear but reappear. The reappearance may have been > daily, > weekly, monthly, and at times yearly...Maybe I dont have JRA??? crazy > disease, > who knows for sure......... > Hugs and smiles to all! > Donna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 It certainly could be a form of reactive arthritis. Have you checked out www.arthritis.org to see if the symptoms fit anything listed there? Check under juvenile arthritis in Disease Center. That seemed to list a few different things. But check out all of it as kids can get lots of different types of arthritis. I am not sure about the meds when he is not flaring; if giving him some type of NSAID when he is flaring is helpful perhaps that would be ok. You would probably want to watch out for any signs of morning stiffness or any joint swelling to make sure more joints are not getting involved. I know it can all be confusing and what is even worse is that for each person the arthritis manifests itself differently. That is why it is so hard to diagnose. Just my thoughts, Michele (19, spondy) Re: New to this board Wow, everyone is confusing me even more. My son is in a very similar situation to the original poster. For him at least, they don't think it is JRA. He is completely fine for 2-3 months, then one day his knee will swell up and start hurting. The doctors who have seen him (not the pediatric rheumy) have said they felt fluid on the knee during those times. But it only last 4-7 days and then he is fine. We haven't made it to the pediatric rheumy during an episode yet, but we have had him tested between episodes and there is no swelling, no sign of arthritis, blood tests are completely ok, etc. When we did visit the rheumy he agreed that he was having episodes of arthritis, but based on his findings, he couldn't diagnose him with JRA. But you guys are saying that it still could be JRA? How do you treat something like that? Would you give him daily medicine during the 2-3 months when he is completely fine? That just makes me uneasy. Our doctor just thinks when he is already sick (virus, strep, etc) it causes this reaction in his knee. What do you think? We know for a fact the last time his knee flared up, he tested positive for strep although he didn't have any other symptoms. This seemed to validate the doctors explanation to us .. > > If the rheumy is diagnosing JRA on the basis of swelling only, Rob would > never have a diagnosis. Rob's knees swell minimally. He was diagnosed on > the basis of fluid in the hip joints on MRI. Has your son had an MRI of > the offending knee? > and Rob 17 Spondy > > On Fri, 26 May 2006 09:42:23 EDT ajaoky@... writes: > > > The Rheumy doesn't think it is JRA because the symptoms do not last at > least six weeks > I find this a little bit strange. Am I the only one? From the very > beginning > in 1970 my symptoms did not last 6 weeks. They would surface and last a > day > to a week then disappear but reappear. The reappearance may have been > daily, > weekly, monthly, and at times yearly...Maybe I dont have JRA??? crazy > disease, > who knows for sure......... > Hugs and smiles to all! > Donna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 I'm confused too! Today I called to make the appointment with the cardiologist for 's heart murmur that the rheumy heard. The person who scheduled the appt. for me said that her daughter had a heart murmur and also arthritis! What a coincidence. Anyway she said that it took two years and more than one rheumy to get her daughter's diagnosis of psioritic (not sure how to spell this) arthritis and after hearing 's symptoms she said it sounded to her like that is what he had. Her daughter doesn't have symptoms for six weeks at a time either. Carolyn > > > > If the rheumy is diagnosing JRA on the basis of swelling only, Rob > would > > never have a diagnosis. Rob's knees swell minimally. He was > diagnosed on > > the basis of fluid in the hip joints on MRI. Has your son had an > MRI of > > the offending knee? > > and Rob 17 Spondy > > > > On Fri, 26 May 2006 09:42:23 EDT ajaoky@ writes: > > > > > > The Rheumy doesn't think it is JRA because the symptoms do not > last at > > least six weeks > > I find this a little bit strange. Am I the only one? From the very > > beginning > > in 1970 my symptoms did not last 6 weeks. They would surface and > last a > > day > > to a week then disappear but reappear. The reappearance may have > been > > daily, > > weekly, monthly, and at times yearly...Maybe I dont have JRA??? > crazy > > disease, > > who knows for sure......... > > Hugs and smiles to all! > > Donna > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 JRA is an autoimmune disorder. That means that symptoms appear when the immune system has been triggered (by something like strep, conjunctivitis, an ear infection, even a bug bite - anything that triggers the immune system) causes the immune system to " turn on " - the problem for people with autoimmune disorders is that many times (most times) the immune system doesn't know how to shut itself down & the body begins attacking itself (such as in the joints) and that is what starts the flare. In most of my son's flares over the past 5 years, I could count back 7 - 10 days and remember he was treated for an illness, or had a cold, etc - but not all. In Robbie's case, the symptoms of a flare never went away without treatment - with the exception of what I call " mini-flares " when he would have some symptoms shortly after we had lowered his medication dose, and after a few days things would usually get back to normal - but even then he was still on medication, so still being treated. Robbie has been on medication since the onset of this disease. We generally find that a flare occurs after going to far with the taper to remove meds. He would need to be " symptom free " for a period of time on medication before we would consider removing them altogether - but the tapering process has alwaysled to a flare in the past. He currently is doing pretty well, though not symptom free, as his mornings can be difficult. He has gone for long periods of time in the past without symptoms -or almost none. I hope this hasn't added to your confusion - I am not up to date on reading the posts - so I may be repeating what someone else has already told you. I hope that you get answers soon so that you know what you are dealing with. Val Rob's Mom (8,systemic) Re: New to this board Wow, everyone is confusing me even more. My son is in a very similar situation to the original poster. For him at least, they don't think it is JRA. He is completely fine for 2-3 months, then one day his knee will swell up and start hurting. The doctors who have seen him (not the pediatric rheumy) have said they felt fluid on the knee during those times. But it only last 4-7 days and then he is fine. We haven't made it to the pediatric rheumy during an episode yet, but we have had him tested between episodes and there is no swelling, no sign of arthritis, blood tests are completely ok, etc. When we did visit the rheumy he agreed that he was having episodes of arthritis, but based on his findings, he couldn't diagnose him with JRA. But you guys are saying that it still could be JRA? How do you treat something like that? Would you give him daily medicine during the 2-3 months when he is completely fine? That just makes me uneasy. Our doctor just thinks when he is already sick (virus, strep, etc) it causes this reaction in his knee. What do you think? We know for a fact the last time his knee flared up, he tested positive for strep although he didn't have any other symptoms. This seemed to validate the doctors explanation to us .. > > If the rheumy is diagnosing JRA on the basis of swelling only, Rob would > never have a diagnosis. Rob's knees swell minimally. He was diagnosed on > the basis of fluid in the hip joints on MRI. Has your son had an MRI of > the offending knee? > and Rob 17 Spondy > > On Fri, 26 May 2006 09:42:23 EDT ajaoky@... writes: > > > The Rheumy doesn't think it is JRA because the symptoms do not last at > least six weeks > I find this a little bit strange. Am I the only one? From the very > beginning > in 1970 my symptoms did not last 6 weeks. They would surface and last a > day > to a week then disappear but reappear. The reappearance may have been > daily, > weekly, monthly, and at times yearly...Maybe I dont have JRA??? crazy > disease, > who knows for sure......... > Hugs and smiles to all! > Donna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 I guess I should have said ABNORMAL amount of fluid in the hip joints....every joint has some synovial fluid. Abnormal would mean excessive amounts. and Rob 17 Spondy On Fri, 26 May 2006 14:46:22 -0400 snooksmama@... writes: If the rheumy is diagnosing JRA on the basis of swelling only, Rob would never have a diagnosis. Rob's knees swell minimally. He was diagnosed on the basis of fluid in the hip joints on MRI. Has your son had an MRI of the offending knee? and Rob 17 Spondy On Fri, 26 May 2006 09:42:23 EDT ajaoky@... writes: The Rheumy doesn't think it is JRA because the symptoms do not last at least six weeks I find this a little bit strange. Am I the only one? From the very beginning in 1970 my symptoms did not last 6 weeks. They would surface and last a day to a week then disappear but reappear. The reappearance may have been daily, weekly, monthly, and at times yearly...Maybe I dont have JRA???crazy disease, who knows for sure......... Hugs and smiles to all! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 I didn't think to add earlier that has had symptoms that have lasted for a period of at least 12 weeks, while receiving pretty aggressive treatment including increasing po steriods and cyclosporine and doing a series of steriod pulses - this included two, week long hospitilizations about a month apart. He had daily cyclic fevers during this time period, progressive migratory rashes, migratory joint pain and morning stiffness, stiffness after resting and pain " all over " much of the time - he often needed to be carried . Not long after this, he experienced 13 months of practically no symptoms, while we lowered his meds (steriods) on a regular basis - then after that (three days after a " prefect " rheumy visit with labs all normal) a small (.5mg) taper brought on a full blown flare, and flares followed about every 3 months for a year, now we have gone over a year without a systemic flare - so we'll take it! His symptoms are minimal compared to the past - but pain is pain & we need to do more to fight his disease. Again - he was on different levels of medication throughout all of this. Val Rob's Mom (8,systemic) Re: New to this board Wow, everyone is confusing me even more. My son is in a very similar situation to the original poster. For him at least, they don't think it is JRA. He is completely fine for 2-3 months, then one day his knee will swell up and start hurting. The doctors who have seen him (not the pediatric rheumy) have said they felt fluid on the knee during those times. But it only last 4-7 days and then he is fine. We haven't made it to the pediatric rheumy during an episode yet, but we have had him tested between episodes and there is no swelling, no sign of arthritis, blood tests are completely ok, etc. When we did visit the rheumy he agreed that he was having episodes of arthritis, but based on his findings, he couldn't diagnose him with JRA. But you guys are saying that it still could be JRA? How do you treat something like that? Would you give him daily medicine during the 2-3 months when he is completely fine? That just makes me uneasy. Our doctor just thinks when he is already sick (virus, strep, etc) it causes this reaction in his knee. What do you think? We know for a fact the last time his knee flared up, he tested positive for strep although he didn't have any other symptoms. This seemed to validate the doctors explanation to us .. > > If the rheumy is diagnosing JRA on the basis of swelling only, Rob would > never have a diagnosis. Rob's knees swell minimally. He was diagnosed on > the basis of fluid in the hip joints on MRI. Has your son had an MRI of > the offending knee? > and Rob 17 Spondy > > On Fri, 26 May 2006 09:42:23 EDT ajaoky@... writes: > > > The Rheumy doesn't think it is JRA because the symptoms do not last at > least six weeks > I find this a little bit strange. Am I the only one? From the very > beginning > in 1970 my symptoms did not last 6 weeks. They would surface and last a > day > to a week then disappear but reappear. The reappearance may have been > daily, > weekly, monthly, and at times yearly...Maybe I dont have JRA??? crazy > disease, > who knows for sure......... > Hugs and smiles to all! > Donna > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2006 Report Share Posted May 26, 2006 Hi There I'm another mum with a child with joint pain and no diagnosis of JRA or JIA. My daughters arthritis started 3 years ago from an almond. She gets pain but no swelling. The paediatric rheumatologist couldn't give a diagnosis but said not to worry as there was NO DAMAGE being done to the knees/other joints despite the pain. Well what a lie that was.. a few months ago my daughter started experience SEVERE knee pain that was different to the regular " arthritis " pain and now has been diagnosed with " chondromalacia patellae " (which is a knee condition). So her knees were being damaged by her " arthritis " or whatever it is. This chonromalaica patellae is a condition runners/sports people usually get and my overweight 10 year old with sore joints barely did any exercise (only what was forced on her at school). So don't believe your doctors when they say that your child's joints aren't getting damaged by the joint pain the doctors have refused to classify as arthritis. My local GP said that whatever her joint condition is (he is calling it a connective tissue disorder for lack of a better term) that it would have been responsible for the damage to the knee joints. I don't think my daughter has JIA/JRA as she does't fit the criteria, the flares aren't long enough (she can have flares that are as short as half a day, really bad ones are a week). But her joints hurt all the time (plus the extra knee pain from this chondromalacia). No swelling, maybe the first time she got it she was swollen a tiny bit.. sometimes they look a tiny bit swollen, it is hard to tell. She has some sort of reactive arthritis I think (reactions to food cause flares). Adults over 35 who are diagnosied with chondromalacia are actually told they have osteoarthritis, but children with the condition aren't told this. So I am not sure what it is that she has. It is frustrating though. Life was so much better when she just had the " arthrits " , her pain levels are hideous now. Donna Australia, Hayley 10, no diagnois of arthrits Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2006 Report Share Posted May 27, 2006 Hi Donna! My name is also Donna and I want to add the add to the statement referring to no damage being done you spoke about. Many, many years ago my mom was told the same thing when I was 5-ish and by the time I was 8 you could see the damage. Of course we are going way back, I was diagnosed in 1970 when treatment was very different. I very seldom had any swelling and still dont yet I know the damage has and still is occuring. I also want to welcome you to an incredible group of even more incredible folks! Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2007 Report Share Posted February 12, 2007 6 Weeks for me. My 1st fill was 1.0 cc, 2nd fill took me to 1.8 cc and now as of today, I have 2.4 cc in a 4 cc band. Cheers!Ally New to this board How long after you were banded before you went back for a fill? I hope to be banded by May. It's here! Your new message!Get new email alerts with the free Toolbar. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2009 Report Share Posted April 4, 2009 Hello Everyone, My daughter's name is Esther, she is about to turn 7. At about 1 year of age we noticed a big change in her. It was like someone flicking a switch. The usual stuff, stopped cooing, stopped eye contact, etc... We started her on ABA at 1 1/2 years of age and have been doing it ever since. She is actually high functioning; she has no digestive issues, no siezures, she is affectionate, she can count and knows her ABC's, knows all her colors and can even match and identify shapes. We did try the GFCF diet and it actually made her eating issues worse. I am very curious about the Biomedical approach. I never thought it would help since Esther has no siezures or digestive issues and GFCF free diet didn't help. How would I know if I should be trying any part of biomedical treatments? We live in New Jersey and wonder if there are other avenues we should be trying. Thanks, Ted Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2009 Report Share Posted May 14, 2009 > > Hi everyone. I am new to this message board. I have a 3 year old son with autism who benefiting greatly from hbot. I have just been informed of a class action suit to make insurance pay for hbot. Everybody needs to get involved in this. If you are not aware of this yet, email me and I will send you the contact info. > Hi, Can you please tell if you are using any Hyperbaric chamber for HBOT for your son and if yes, what type is it and the manufacturer. I need more Information on it. Thanks & Regards, Neil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2009 Report Share Posted May 14, 2009 we are using a vitaris 320 from oxyhealth ________________________________ From: ganguly_indranil <abap11@...> medicaid Sent: Thursday, May 14, 2009 12:04:46 PM Subject: [ ] Re: New to this board > > Hi everyone. I am new to this message board. I have a 3 year old son with autism who benefiting greatly from hbot. I have just been informed of a class action suit to make insurance pay for hbot. Everybody needs to get involved in this. If you are not aware of this yet, email me and I will send you the contact info. > Hi, Can you please tell if you are using any Hyperbaric chamber for HBOT for your son and if yes, what type is it and the manufacturer. I need more Information on it. Thanks & Regards, Neil Quote Link to comment Share on other sites More sharing options...
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