Guest guest Posted February 13, 2000 Report Share Posted February 13, 2000 Dear SR, Nothing wrong with a nice, long winded letter. I don't mind reading if you don't mind writing. kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2000 Report Share Posted February 13, 2000 Dear Joy, Your sons onset of systemic jra sounded alot like my sons. He is 9 and he came down with the systemic jra at age 6. I believe they start out with ibuprofen and motrin in the beginning to see if they can control the disease withe milder medications. My son was on these for 6 weeks with no real results and went on to prednisone, which turned his life around. He was basically so sick he could not get out of bed, with fever and stiffness, 24 hrs after the prednisone he was out in the backyard running around in the yard..It is a miracle drug with side effects.. hopefully your sons symptoms can be controlled with the ibuprofen...Hopefully you could find a pediatric rheumatologist in your area.. I think that would be the best bet.. By the way my best friend lives in Hailey, Idaho, she loves it there.. so beautiful. We live on an island in R.I. ( 9 miles long a mile wide)Wishing your son the best hope, you have found a good site here with a lot of support.. Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2000 Report Share Posted February 13, 2000 Joy I too am a new member. Our son Lochlan had an attack in July last year, with extrememe temps, enlarged spleen, he constantly complained that his legs " didn't work " and literally walked (no disrespect) like an old man....this went on for a number of weeks, we eventually got into our paed. who arranged many blood tests. He had mouth ulcers and the screams at night when Lochlan awoke with a fever and pain were the worst. Slowly but surely, with no real diagnosis from our paed, Lochlan's fevers subsided (as the climate warmed). We are currently in the middle of our summer (which is in the 30 degree celsius temps and mid to high 90% humidity). Lochlan has approx 3 one day (night) attacks a month - we are holding out for winter. Lochlan has never had a rash, but was diagnosed with JRA. All his symptons have led to SD. On Tuesday we go to the Opthamologist and then again his Paed on Wednesday...........just check ups. We didn't use any " full on " drugs other than what is known as panadol here (and lot's of it). I can understand your frustration with Doctors......in order to answer your question about weather let me tell you about my childhood. Remember each person reacts differently to arthritis and the conditions in which it occurs. I was 18 months (over 30 yrs ago) and diagnosed with CJA (JRA) call it what you will. My parents were told I didn't have SD. I was literally crippled with it. I was born in England and lived there when I was diagnosed. By the time I was 7 my parents had arranged to move to Australia I was that sick and debilitated. Good move - over that past 25 years I have fewer and fewer attacks. It has taken some time, I get pain and am a good barometer as are most. HOWEVER I moved to which is similar weather to England for two years, by the end of the first winter I was literally crawling onto the floor and on my hands and knees until I could loosen the stiffness enough to get up....major pain and anxiety. I was put onto plaquinil and another drug. The plaquinil caused side effects and I chose to go off it very quickly and (I tend to use pain management - which is easier for an adult than a child). We moved to Brisbane which is alot warmer/dryer but still cool during winter. At this stage I had such an inflammation in my arm that I lost the use of my left hand and it took considerable physio and perserverance to get the use back....needless to say I returned to sunny tropical (not as wet as some areas) Townsville. Long winded? yes, but you can see that the weather has had a huge impact on my life, and possibly my sons, although it is a little too early to confirm that yet. I don't have Lochlan on any drugs and will see how our new winter goes. As for other advise........see a podiatrist and see if there is anything they can do to " ease " the way your son walks and therefore his arthritis. My son has pronation and shortly he will have orthotics. I am a practice manager for a podiatrist and swear by what I have seen. orthotics can make a huge difference to how someone walks and therefore ease and relieve some pain. My hubby says he has never seen an email this long :-). I promise future one's will be shorter but I needed to tell you my story so you may be able to make a more " informed " decision. Wishing everyone well, and I look forward to hearing from you all. ps I deliberately didn't go through my thoughts on Doctors, I think everyone has there horror stories, I hope you find a good one that you can relate. SR ---------- > From: Joy <joyhine@...> > ' onelist' > Subject: New(ish) member > Date: Sunday, 13 February 2000 10:22 > > From: Joy <joyhine@...> > > Hello all, > > I signed up for this list a month ago and have been lurking ever since. > I've been interested to read your stories and am impressed with how brave > your kids are. > > I kept putting off writing until we had a positive diagnosis made in our > own case, and last week we did, more or less. > > Our little boy Charlie will be four next month. He first got sick on > December 4. He saw the doctor seven times before he was admitted to the > hospital in Sun Valley on December 16. On December 18 he was transferred to > St. Luke's in Boise, where he stayed until the 24th. The diagnosis they > made was pneumococcal pneumonia, and he was on i.v. antibiotics and oxygen. > We were sent home on Christmas Eve with a ten day supply of oral > antibiotics (Cefuroxime) and the assurance that, all appearances to the > contrary, he was, in fact, getting better. We spent the next ten days > hoping for improvement and seeing none--daily fevers of 104, rash, pain, > misery. We KNEW that something was wrong and were so frustrated to be told > that he was just " getting better slowly. " > > Miraculously, my stepmother-in-law mentioned Still's disease on January 4. > My husband immediately went on-line and found the Stilligan's site, and it > was such a RELIEF. We then just had to convince the doctors, which, as I'm > sure many of you understand, was quite a challenge. First they did more > blood tests--his white blood cell count was (still) at 20,000+. They were > surprised. We were not. Hmmm, the doctor said, he's still really > sick.....(Well, duh!) Then we were sent back to Boise for a CT scan; they > were looking for anything else in the world (tumors, walled-off infections, > things perforated or ruptured) that they might have missed. Nothing, thank > God. The next day I got a bizarre phone call from the pediatric disease > specialist in Boise, telling me that Charlie's symptoms " seem to be > consistent with a diagnosis of systemic-onset juvenile rheumatoid > arthritis " --with no mention of the fact that he had previously dismissed > the idea out of hand. Whatever. > > Last week, on a follow-up visit to his own doctor here in Hailey, we were > told that Still's disease is the " presumptive diagnosis " and that we should > continue to treat it as we have been--150 mg. of ibuprofen, three times a > day. His doctor said that he would consult a pediatric rheumatologist in > SLC about Charlie's case, but that he didn't feel that there was anything > to be gained by our going to one at this point, since he or she would not > be able to make a more positive diagnosis, and, in any case, we would just > be told to do the same things for treatment. > > In the meantime, Charlie is showing slow but definite improvement. His > appetite is returning, and he's beginning to regain some of the weight he > lost. The shadows around his eyes are gone, and in the past couple of days > he has the tiniest bit of color in his cheeks. He is happy and fever-free > most days. The rash comes and goes, but does not bother him. He is very > stiff, with a weird gait, but says he is in no pain. Some days he complains > that his legs feel " asleep, " and he has a lot of difficulty getting up and > down our stairs, or sitting down on the floor and getting back up. But he's > so much better. > > He is supposed to go back to his regular doctor next month for a follow-up, > to make sure there's continued improvement. > > I've been wondering (your opinions, please) if we need to go to a pediatric > rheumatologist on our own, if the Motrin alone is sufficient treatment, and > what kind of physical therapy would be beneficial. (We don't have access to > a covered pool or a hot tub/Jacuzzi.) Also, should we consider a move to a > warmer climate, as my many relatives in Arizona suggest? > > My husband wants to know if any of you are managing the jra with Motrin > alone, and if there are any stories of success with alternative treatments > (specifically acupuncture). > > I realize that some of our questions have probably been addressed in the > month since I signed up, and I hope you won't mind reiterating. > > Thanks for this opportunity to vent. > > Joy > > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2000 Report Share Posted February 13, 2000 Hi Joy, My name is Jana and I live in Boise. In fact, I live on Warm Springs, about a mile from St Lukes. My 13 year old son has had polyarticular JRA for 5 years. His form of JRA is different then your sons, but they would see the same doctors. There are only two rheum. here in Boise that will see kids. Dr. Rupp and Dr. Loveless. We see Dr. Loveless because my son didn't really like Dr. Rupp, who is a female. Anyway, there is not a Dr. in Boise that sees enough JRA kids to be any kind of an expert. We learned this the hard way. Please, for your own piece of mind, schedule an appointment at the Children's Hospital in Seattle. We have seen both Dr. Sherry and Dr. Wallace, both of them are good. They can give you a good idea of where the disease is at in one day. If you want to get together or talk on the phone, let me know. Boise and Sun Valley are hard places to live with JRA because of doctors, I don't think the weather is a big factor. We have decided to go to Seattle every 4 months, seeing Dr. Loveless here between times. My son was doing unnessessary damage to his joints by not taking the correct medications. Thanks, Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2000 Report Share Posted February 15, 2000 Hi Joy, Oh, you're story sounds so darned familiar My son was diagnosed with Still's almost 5 years ago, just after he turned 6 years old. His was a really sudden and severe onset. His white blood cell count was 78,000. They admitted him to the local hopital for two weeks and as you can imagine, they tested him for everything under the sun. I was so relieved to hear finally that it was a form of arthritis, but I never realized that arthritis could be such a progressive and debilitating illness for a child. I think it would be a really good idea for you to consult with a pediatric rehumatologist. They have much better knowledge and experience in treating kids with JRA. A lot of irreversible joint damage can occur, especially in the first two years of illness, and for that reason these days the predominant medical opinion is to treat early and aggressively. Many of the children who were diagnosed with JRA 20 years ago were treated with nothing more potent than NSAID's. And many of these same children, while growing up, have needed to have joint replacement surgeries to compensate for damage that has taken place. Some of the newer meds may be able to prevent joint destruction, or at least hopefully lessen the severity of it. So I wouldn't necessarily take at face value what your son's doctor told you about the treatment options. It's great to hear that Charlie is slowly staring to feel better but if he's still having some trouble walking up and down stairs and getting up from a seated position, I'd say there's still some room for improvement! My son used to have that same 'old man's' gait. Not anymore, though. They've come a long way in treating JRA and having your son seen by a rheumatologist sounds like a really good next step. Oh, I almost forgot! We live in the most beautiful, warm and sunny climate ~ Maui, Hawaii. We moved here 6 years ago from Boston, MA. Winters here are sometimes a bit rainy and that does seem to ~sometimes~ have an effect on my son's joint tenderness. I think it's pretty much established that when the barometric pressure drops, some people with arthritis will tend to feel more sore, but my son has also had periodic flare-ups that seemed totally unrelated to any change in season/weather. It would be interesting to learn how many people from Arizona and other warm, dry climates have arthritis. I'm sure there are quite a few I don't think geographic location plays too large a role in it. Take care, Georgina Joy wrote: > Hello all, > > I signed up for this list a month ago and have been lurking ever since. > I've been interested to read your stories and am impressed with how brave > your kids are. > > I kept putting off writing until we had a positive diagnosis made in our > own case, and last week we did, more or less. > > Our little boy Charlie will be four next month. He first got sick on > December 4. He saw the doctor seven times before he was admitted to the > hospital in Sun Valley on December 16. On December 18 he was transferred to > St. Luke's in Boise, where he stayed until the 24th. The diagnosis they > made was pneumococcal pneumonia, and he was on i.v. antibiotics and oxygen. > We were sent home on Christmas Eve with a ten day supply of oral > antibiotics (Cefuroxime) and the assurance that, all appearances to the > contrary, he was, in fact, getting better. We spent the next ten days > hoping for improvement and seeing none--daily fevers of 104, rash, pain, > misery. We KNEW that something was wrong and were so frustrated to be told > that he was just " getting better slowly. " > > Miraculously, my stepmother-in-law mentioned Still's disease on January 4. > My husband immediately went on-line and found the Stilligan's site, and it > was such a RELIEF. We then just had to convince the doctors, which, as I'm > sure many of you understand, was quite a challenge. First they did more > blood tests--his white blood cell count was (still) at 20,000+. They were > surprised. We were not. Hmmm, the doctor said, he's still really > sick.....(Well, duh!) Then we were sent back to Boise for a CT scan; they > were looking for anything else in the world (tumors, walled-off infections, > things perforated or ruptured) that they might have missed. Nothing, thank > God. The next day I got a bizarre phone call from the pediatric disease > specialist in Boise, telling me that Charlie's symptoms " seem to be > consistent with a diagnosis of systemic-onset juvenile rheumatoid > arthritis " --with no mention of the fact that he had previously dismissed > the idea out of hand. Whatever. > > Last week, on a follow-up visit to his own doctor here in Hailey, we were > told that Still's disease is the " presumptive diagnosis " and that we should > continue to treat it as we have been--150 mg. of ibuprofen, three times a > day. His doctor said that he would consult a pediatric rheumatologist in > SLC about Charlie's case, but that he didn't feel that there was anything > to be gained by our going to one at this point, since he or she would not > be able to make a more positive diagnosis, and, in any case, we would just > be told to do the same things for treatment. > > In the meantime, Charlie is showing slow but definite improvement. His > appetite is returning, and he's beginning to regain some of the weight he > lost. The shadows around his eyes are gone, and in the past couple of days > he has the tiniest bit of color in his cheeks. He is happy and fever-free > most days. The rash comes and goes, but does not bother him. He is very > stiff, with a weird gait, but says he is in no pain. Some days he complains > that his legs feel " asleep, " and he has a lot of difficulty getting up and > down our stairs, or sitting down on the floor and getting back up. But he's > so much better. > > He is supposed to go back to his regular doctor next month for a follow-up, > to make sure there's continued improvement. > > I've been wondering (your opinions, please) if we need to go to a pediatric > rheumatologist on our own, if the Motrin alone is sufficient treatment, and > what kind of physical therapy would be beneficial. (We don't have access to > a covered pool or a hot tub/Jacuzzi.) Also, should we consider a move to a > warmer climate, as my many relatives in Arizona suggest? > > My husband wants to know if any of you are managing the jra with Motrin > alone, and if there are any stories of success with alternative treatments > (specifically acupuncture). > > I realize that some of our questions have probably been addressed in the > month since I signed up, and I hope you won't mind reiterating. > > Thanks for this opportunity to vent. > > Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2000 Report Share Posted February 15, 2000 Hello , Welcome and thanks for sharing your story with us. Very interesting, how you feel so strongly about the weather affecting your symptoms. It's often hard to know for sure what exactly is affecting this illness, as it likes to come and go with periods of increased disease activity and then periods of near remission. Whatever seems to work, though. If I had a chronic illness, I think I'd be happier living where the climate was mild for longer periods during each year, as well. I'm glad to hear that Lochlan's symptoms seem to be decreasing. I hope he has more improvements. And I hope your son's visits to see the eye doctor and pediatrician go well. That can be very re-assuring. What exactly is panadol? Is it a prescription drug or a supplement? I don't think I've heard it mentioned in the group before. Thanks again for telling us about your (and your son's) experience. Take care, Georgina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2008 Report Share Posted June 3, 2008 Thanks. I'll post on how it goes. Quote Link to comment Share on other sites More sharing options...
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