Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 Hi , I have met Dr. Rose' several times now......he did see Mandy once. She is doing well now. She had a really bad flare a few months ago, but they started her on MTX, and that seemed to help. She also sleeps on a magnetic mattress, and I think it may help also. I think our hospital uses steroids as a last resort. She is not on any either. I am glad to hear your son is doing so well. I hope and pray Mandy continues to do well, as she loves her synchronized swimming, and she had to stop before, as she was in so much pain. Has Jeff ever had any problems with popping in his joints? Every once in awhile, she feels a pop, and it is very painful! It happened to her in her elbow last week at swim practice. She just cried, and cried....... Thanks for responding, Janet Re: [ ] First time on list > From: Valverde <cvalverde@...> > > Janet, > > We live near West Grove, about half an hour from DuPont. Being systemic, of > course he had the rash, fevers, night sweats, chills, and was affected in his > wrists, elbows, ankles and knees, with the knees being the worst. Jeff wasn't > rx'd with systemic jra until he was 13, so he never saw Dr. Athreya. You'll > really like Dr. Rose'; he's a wonderful doctor and a really nice guy. > > Jeff is doing quite well; he is currently off of all meds and his outlook is > fortunately very good. Unless he has another flare-up, he doesn't see Dr. Rose' > again until March. > > How is Mandy doing? Try to keep her off of Prednizone, if you can. It is a > real miracle to watch how quickly the symptoms will subside, but it can cause so > many other problems and takes a long time to taper off. But I guess you > probably knew that. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 Janet, No, Jeff hasn't had any popping in his joints. He hasn't had any joint problems in over a year, thank God. He lost all of his symptoms except the rash in August, 1998. The rash has only occurred once in the past few months. We were at DisneyWorld, and he had been running around all day. What hospital are you using? Lunch break is over...gotta get back to work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 1999 Report Share Posted December 20, 1999 Mandy goes to DuPont hospital also. Mandy does not have any rashes.....I guess that goes with systemic? Janet Re: [ ] First time on list > From: Valverde <cvalverde@...> > > Janet, > > No, Jeff hasn't had any popping in his joints. He hasn't had any joint problems > in over a year, thank God. He lost all of his symptoms except the rash in > August, 1998. The rash has only occurred once in the past few months. We were > at DisneyWorld, and he had been running around all day. > > What hospital are you using? > > Lunch break is over...gotta get back to work. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 1999 Report Share Posted December 22, 1999 Hi , I couldn't help but type a reply, when I saw what you said about prednisone Oh, I think we all know plenty horror stories about that drug. Unfortunately, for some of the severe cases of systemic JRA it's the only thing available that is fast-acting and powerful enough to get a very sick child stabilized. My son's systemic JRA affected his spleen, lungs and heart, as well as his joints. He might have died, if we hadn't started him on corticosteroids. As much as I dislike his continuing to need it, I am so very thankful that it was available to us when he was critically ill. It was the only med he responded to. Long term high dose use can produce unwanted side effects, that's for sure, but sometimes it's the only viable option. Just my 2 cents, Georgina Valverde wrote: > Janet, > > We live near West Grove, about half an hour from DuPont. Being systemic, of > course he had the rash, fevers, night sweats, chills, and was affected in his > wrists, elbows, ankles and knees, with the knees being the worst. Jeff wasn't > rx'd with systemic jra until he was 13, so he never saw Dr. Athreya. You'll > really like Dr. Rose'; he's a wonderful doctor and a really nice guy. > > Jeff is doing quite well; he is currently off of all meds and his outlook is > fortunately very good. Unless he has another flare-up, he doesn't see Dr. Rose' > again until March. > > How is Mandy doing? Try to keep her off of Prednizone, if you can. It is a > real miracle to watch how quickly the symptoms will subside, but it can cause so > many other problems and takes a long time to taper off. But I guess you > probably knew that. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 1999 Report Share Posted December 22, 1999 Hello Jodi, Thanks so much for sharing what worked for your daughter's itchiness. I'm sure it will be a helpful suggestion for others here who are concerned about the itchy rash. I'm very grateful that my son's JRA (Still's) rash isn't ordinarily itchy because he had it daily for a very long time and even now, when he's flaring, it still always comes back. I hope feels a lot better, and that the Naprocyn continues to keep the symptoms under control. Also, nice to see a message from you Aloha, Georgina Jodi Giffin wrote: > Hello All! > My daughter, was diagnosed in November also. She is 14, and like > n, she had fevers and rash. She would sit and cry for hours because of the > itching. The rheumy's had her on 2 different 'itch medicines' they helped take > the edge off the itch. They were IC Hydroxyzine Hcs 25mg. 3x day, this worked > better than the Zyrtec 10mg. 1x daily. What really helped the most was Aveeno > lotion for Dry Skin. We had tried the bath additives and everything else, but > the lotion and Aveeno Dry Skin bar soap really made the difference. They also > have a lotion especially for itching, called appropriately Itch Cream which > really helped also, but it is difficult to find. Her flare only?? lasted for 6 > weeks, that is the extreme fatigue, and the rash so her Drs. are questioning > their Systemic JRA diagnosis. I am not, her symptoms match alot of what I've > seen on the list, her fevers slowly faded after starting the Naproxen 325mg. 2x > daily. After the fevers faded, she would still have bone deep chills in the > evening, this is still with the active rash, and would take most of the night to > get her warmed up. I hope some of this info can help your children, I would > love if no child ever had to go through the misery of that JRA rash again. I > have seen how much agony my daughter went through in her flare and my thoughts > and prayers go out to everyone suffering through this. Jodi > > WILLIAM PRICE wrote: > > > From: " WILLIAM PRICE " <william.e.price@...> > > > > Georgina, n was just diagnosed in mid-November. She had a fever for > > 30+ days and rash. She still gets the rash pretty bad every evening. It > > itches terribly! Does anyone know what we can do for this itching all over > > her body? Right now n has little arthritis. Some in her wrists that > > is tolerable. She is just on naprocyn at 250mg twice a day. Our physician > > says that he is conservative and really doesn't want to put her on steroids. > > If she worsens he said the next step would be methotrexate. How does this > > all sound to you? We are looking forward to a second opinion soon. > > Re: [ ] First time on list > > > > >From: Georgina <gmckin@...> > > > > > >Hi , > > > > > >It sounds like Seattle Children's Hospital will be a great place to have > > >your daughter seen, since they've got so many pediatric rheumatologists > > >there. Please let us know how it goes. What medications is she currently > > >taking for her systemic JRA? > > > > > >Take care, > > >Georgina > > > > > >WILLIAM PRICE wrote: > > >> > > >> From: " WILLIAM PRICE " <william.e.price@...> > > >> > > >> Our daughter , who was just diagnosed with Still's, will be going to > > Seattle > > >> Children's Hosp. in January for a second opinion. We live in Portland, > > and > > >> there is just one doctor here that is a pediatric rheumy. The hospital > > in > > >> Seattle has a regular ped. rheumatology dept. with 4 doctors. It came > > >> recommended to us by our pediatrician and allergist. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 1999 Report Share Posted December 22, 1999 Hi , I'm glad you found our little group. I am of course sorry though, that your son has JRA. Sounds like it was controlled really well and I share your hopes that this truly is a remission. I know exactly how you feel about DuPont, as I feel the same way about my son's doctors. It took us about a month too, before getting the diagnosis. Two weeks of going back and forth to visit doctors and then two weeks in the hospital. After Josh got stabilized again, we flew off island to see a pediatric rheumatologist and he knew immediately. From that day forward, we've had a pretty good working relationship. I hope things continue going well for Jeff. Take care, Georgina Valverde wrote: > This is my first time on the list. My son Jeff was rx'd in June, 1998 at the age of > 13. At that time, there was very little on the web regarding Still's. I'm happy > to see this list. I first ran across it at work and had to leave the room after > reading the messages and remembering the pain my son was in. > > Jeff was rx'd after about a month of agony and misdiagnoses. There were a couple of > times he couldn't walk to the ambulance to go to the emergency room. By the time he > walked into the gp's office like a little old man and about 30 pounds underweight, > the gp sent us to DuPont. We were referred to an infectious disease specialist who > took one look at him and made the correct diagnosis. Jeff's rheumy, Dr. > Rose', hospitalized him overnight and put him on Prednizone and Indomethacin. I may > be predjudiced, but DuPont is the best! As is Dr. Rose'. > > He has not had another really bad day in over a year; he went off of the Prednizone > in August and has just been taken off of the Indo. It does take a long time to > taper the Prednizone. > > If he can stay symptom-free for six months, Dr. Rose' will be ready to call it a > remission. > > I pray for all of you and all of your children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2000 Report Share Posted January 3, 2000 Hi , Just wanted to let you know Robbie has an appointment with Dr. Sherry Thursday, Jan 6th. I will say " hi " for you and let you know how it went when we get back. Thanks, Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2000 Report Share Posted January 3, 2000 Jana I hope it goes well. Good luck. Re: [ ] First time on list > From: JanaB41@... > > Hi , > > Just wanted to let you know Robbie has an appointment with Dr. Sherry > Thursday, Jan 6th. I will say " hi " for you and let you know how it > went when we get back. > > Thanks, Jana > > > Quote Link to comment Share on other sites More sharing options...
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