Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Dear Kim....hi ...my son (2yrs old with pauci JRA) has been on naproxen since May 2001....he has a lot of bruising too...they say its a side effect, stomach problems, upset is another one. Take Logan to see a pediatric rheumatologist...or have you already? They may be hard to find, but its worth it.....there are less than 200 P.R. in the US to care for the 300,000 children with arthritis...so you may have to travel to find one. Is there a Shriner's Hospital near you any where? Don't give up until you get all the answers!....drs will put you off if you let them....most know very little about kids with arthritis! Take care..... (Mom to Will, Pauci, 2yrs. old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Kim are you in Georgia? reason i am asking you mentioned scottish rite hosp my daughter has been there also she goes to egleston Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2002 Report Share Posted June 23, 2002 Robbin, No I'm in Texas. How old is your daughter,and what is she diagnosed with? Kim & Logan 4 & 1/2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Hi , I thought of you today, while reading the latest Kids Get Arthritis Too Newsletter with Josh. Stemming back to some of our talk about the actual numbers of children with JRA in the US. I'm not sure if you've read it yet but in the Q & A section called Ask The Experts, Giannini, DrPH, MSc (Professor of Pediatric Rheumatology) says .... " ...Work researchers did with the National Institutes of Health suggests that there are probably fewer than 50,000 cases of JRA in the United States when using a strict definition of JRA... " Can you believe how radically the numbers change? I'd take it that this is probably a very reliable, up-to-date, source but I don't quite understand what is meant by a 'strict definition' of JRA. I don't know the criteria. Just thought you might like to know, Georgina ----- Original Message ----- From: laocme12@... hi ...my son (2yrs old with pauci JRA) has been on naproxen since May 2001....he has a lot of bruising too...they say its a side effect, stomach problems, upset is another one. Take Logan to see a pediatric rheumatologist...or have you already? They may be hard to find, but its worth it.....there are less than 200 P.R. in the US to care for the 300,000 children with arthritis...so you may have to travel to find one. Is there a Shriner's Hospital near you any where? Don't give up until you get all the answers!....drs will put you off if you let them....most know very little about kids with arthritis! Take care..... (Mom to Will, Pauci, 2yrs. old) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Kim is 15 years old going to the 10th grade she has poly JRA with connective tissue disease yall must have a scottish rite hosp there in Texas we also have one in Atlanta lolol what part of Texas are you? Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Kim- If Logan's been having problems since November 2001, I'd seriously question the diagnosis of reactive arthritis. Do you feel good about the rheumy you're seeing? I think choosing the right dr. is one of the most impt. decisions you make in dealing with this disease. It sounds like Logan's in a lot of pain and getting worse. Maybe Naprosyn is not enough. Ask questions and make sure they get answered!! Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Hugs to you Kim and to Logan. Yes, sadly it is this hard in the beginning, diagnosing this is really just ruling out all of the other possibilities, unfortunately. I think all of us would agree that the early days are the rough ones, there isn't any one set of meds that is right for one child. Sometimes, it is trial and error, and waiting, waiting for the right combination to work. It is so very hard to watch your child in pain. Our thoughts are with you and prayers that the right combination falls in to place for little Logan. Have you talked with the Doc about the bruising (if you already said so, forgive me) - my son has been bruising very easily - and he isn't on a NSAID. I don't know if it is just being a boy, who is doing remarkably well or how concerned I should be. I am watching close. Hang in there! Val Rob's Mom(4,systemic) In a message dated Sun, 23 Jun 2002 1:47:21 AM Eastern Standard Time, berlydawn4kids writes: > > > Thank ya'll for replying so fast ! It is both sad and wonderful to > have so many people to talk to. I hate that there are more kids out > there like Logan,,and I hate this horrible disease! Thanks for the > info,Amy. It just really makes me think that Logan has polyarticular > (sp?)arthritis,not reactive. He dragged his leg behind him several > times when he was about 20 months,but whenever we took him to the > Dr.he would be fine.He had his first major flare in Nov.of 2001.He > couldn't walk for days. We went to the orthopedic Dr. who did a lot > of test with no results.Then Logan got better for about 2 weeks,then > all of a sudden,he couldn't walk,crawl,or anything.We went back to > the orthopedist,,he did a bone scan,,saw nothing.Then all of a sudden > he just got better,and we thought " well thank goodness that is over " > Fast forward to Feb.and it was the same old thing.So we finally got > into ish Rite Hospital to see a ped rheumy in April. This is > where the major frustration started. I don't feel like we got many > answers,other than,yes he has arthritis.I haven't been told what kind > really,,and it seems to just keeps spreading. His sed rate is staying > at about 48-50 and his liver count is slightly elevated,his ASO titre > is VERY high 1280 (regular is 1-200)and now he is bruised so > badly.They also put him on a daily antibiotic,and he still got strep > 2 weeks ago.AGGGHHHH,,,,is it always so hard to actually get a > diagnoses,and to get on meds that don't have these adverse reactions? > Sorry again for the long post,,as you can see I have been bottled up > for a long time. > Thanks,Kim and Logan 4 & 1/2 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Total agreement on that! Diane. Many hugs and prayers for Logan.. Rusty Limbs On Mon, 24 Jun 2002 12:32:07 EDT dbornscheu@... writes: Kim- If Logan's been having problems since November 2001, I'd seriously question the diagnosis of reactive arthritis. Do you feel good about the rheumy you're seeing? I think choosing the right dr. is one of the most impt. decisions you make in dealing with this disease. It sounds like Logan's in a lot of pain and getting worse. Maybe Naprosyn is not enough. Ask questions and make sure they get answered!! Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2002 Report Share Posted June 24, 2002 Robbin, Yes we go to the ish Rite hosp. in Dallas. We live in north Tx, about an hour from Dallas. We live in a little bitty town named Aubrey. So what exactly is a conective tissue disorder? And how is that diagnosed? This is all so frustrating,,,I just wish we would be told " Logan has such and such,,here is some medicine,,he will live a full and wonderful life,,and be pain free " But it is all so uncertain. " Logan may or may not outgrow this,,he may or may not be in pain his entire life,,he may or may not be 'normal' " Anyway enough whining,,,thanks for writing,,it helps just to know that I'm not alone. Kim & Logan 4 & 1/2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 Hi,Kim. Welcome to the group. When a child with jra gets strep they do get,in my opinion, very sick. They have a lot of joint aches. At least my son(15, AS and pauci jra) did when he got it last year. I do have an older daughter(she does not have arthritis) who went through many strep infections, with scarlet fever, when she was younger (3y.o.). She caught strep once a month for about ten months, even on antibiotics. Eventually it was determined her tonsills were so infected and swollen the only choice was to remove them. She did not catch it again until she was 12. Unfortunatly for Logan, the strep could be something else, not jra related. It does sound like he has arhtritis going by the signs you have seen. It can take long to get an acurate diagnosis. It took us 7 months from the first symptom for my son. Michele more on Logan Thank ya'll for replying so fast ! It is both sad and wonderful to have so many people to talk to. I hate that there are more kids out there like Logan,,and I hate this horrible disease! Thanks for the info,Amy. It just really makes me think that Logan has polyarticular (sp?)arthritis,not reactive. He dragged his leg behind him several times when he was about 20 months,but whenever we took him to the Dr.he would be fine.He had his first major flare in Nov.of 2001.He couldn't walk for days. We went to the orthopedic Dr. who did a lot of test with no results.Then Logan got better for about 2 weeks,then all of a sudden,he couldn't walk,crawl,or anything.We went back to the orthopedist,,he did a bone scan,,saw nothing.Then all of a sudden he just got better,and we thought " well thank goodness that is over " Fast forward to Feb.and it was the same old thing.So we finally got into ish Rite Hospital to see a ped rheumy in April. This is where the major frustration started. I don't feel like we got many answers,other than,yes he has arthritis.I haven't been told what kind really,,and it seems to just keeps spreading. His sed rate is staying at about 48-50 and his liver count is slightly elevated,his ASO titre is VERY high 1280 (regular is 1-200)and now he is bruised so badly.They also put him on a daily antibiotic,and he still got strep 2 weeks ago.AGGGHHHH,,,,is it always so hard to actually get a diagnoses,and to get on meds that don't have these adverse reactions? Sorry again for the long post,,as you can see I have been bottled up for a long time. Thanks,Kim and Logan 4 & 1/2 Quote Link to comment Share on other sites More sharing options...
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