Guest guest Posted October 22, 2001 Report Share Posted October 22, 2001 Diane, Hang in there - I'm saying a prayer for a quick remission return. Val In a message dated Mon, 22 Oct 2001 1:07:08 PM Eastern Daylight Time, dbornscheu@... writes: > Hi everybody- > > As some of you know, my daughter (2 1/2) has pauci, but has been in > remission for just shy of one year. She flared this weekend. She was > previously only affected in her right knee, but both her knee and her left > elbow swelled up. She was walking funny in the morning on Saturday. I keep > asking her if anything hurts and she says no, which seems kind of strange. > Then before she went to bed, she started screaming that her eyes hurt. She > had a fever. We all have colds (or anthrax or smallpox or something). I'm > hoping it was just a headache or eyes burning from the fever. She was just > at the eye doctor's two weeks ago and everything was okay. I guess we'll be > starting the rounds with drs. again. > Sunday and this a.m., she seemed to be walking okay. Maybe a slight limp > -- hard to say. Still some swelling, but nothing major. This is weird to me > because before when she flared, it continued unabated for 6 mos. > Anyway, I've thought about how I'd handle this if it came back, and > thought I'd be a basketcase after having seen the difference in her with > symptoms and with none. I'm surprisingly calm and accepting (so far). I > think much of that is due to this group. My husband didn't understand why I > continued to keep up with all these emails when was fine. This is why. > I thought it was important to remember she still has the disease and it > could come back, and I wanted to be prepared if and when it did. So, we'll > deal with it. But it is a bummer. We had a great year. > > Diane > > > For links to websites about arthritis and JRA, visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2001 Report Share Posted October 22, 2001 Hi diane, Oh, my heart goes out to you guys. Maybe this isn't going to turn into a full-blown flare, though. Maybe it's just some mild arthritis activity brought on by the virus you guys have that will go away as soon as you're all recovered? I think that's one of the worst parts of this disease .... that it can come and go with periods of more and less activity. I used to sometimes get very discouraged after Josh had a period of wellness, only for him to then have another flare. It didn't seem fair. I guess it does get easier over time, as you learn that you may very well have to face repeated episodes or flares and you get more used to the pattern. As long as there's a period of good health and little pain in between, it makes the whole thing easier to deal with. Still, Josh has never had an unmedicated remission. I think if he did, it might very well be even more discouraging for me to see him relapse and have lots of pain and other symptoms again. You do sound very calm and accepting, though. That's a great way to handle these kinds of changes and I commend you for that. will look to you for strength and she'll notice your reactions and responses. It does make a difference. She knows you'll all be able to handle whatever happens. And hopefully, this won't be the beginning of a flare. Let us know how it goes, okay? Take Care, Georgina dbornscheu@... wrote: > > Hi everybody- > > As some of you know, my daughter (2 1/2) has pauci, but has been in > remission for just shy of one year. She flared this weekend. She was > previously only affected in her right knee, but both her knee and her left > elbow swelled up. She was walking funny in the morning on Saturday. I keep > asking her if anything hurts and she says no, which seems kind of strange. > Then before she went to bed, she started screaming that her eyes hurt. She > had a fever. We all have colds (or anthrax or smallpox or something). I'm > hoping it was just a headache or eyes burning from the fever. She was just > at the eye doctor's two weeks ago and everything was okay. I guess we'll be > starting the rounds with drs. again. > Sunday and this a.m., she seemed to be walking okay. Maybe a slight limp > -- hard to say. Still some swelling, but nothing major. This is weird to me > because before when she flared, it continued unabated for 6 mos. > Anyway, I've thought about how I'd handle this if it came back, and > thought I'd be a basketcase after having seen the difference in her with > symptoms and with none. I'm surprisingly calm and accepting (so far). I > think much of that is due to this group. My husband didn't understand why I > continued to keep up with all these emails when was fine. This is why. > I thought it was important to remember she still has the disease and it > could come back, and I wanted to be prepared if and when it did. So, we'll > deal with it. But it is a bummer. We had a great year. > > Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 Tree- I hope has " invisible arthritis " too. Actually, since Saturday, she's seemed pretty much okay. I see some swelling, but nothing major. I don't know what to make of it. Going to the Dr. tomorrow, so we'll see what he thinks. Thanks for your good wishes. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 Georgina- Maybe this was just a little reminder Arthur's still here. The come and go thing's new to me. But I will say, about two months ago, we went away for the weekend to the mountains. It was cold at night (if you remember, we're in Arizona and not accustomed to cold), and in the a.m., was limping a bit. I was concerned, but we went back to Phoenix and all was well til now. I thought it was a fluke. Weird. I'll keep you posted. Thanks. Best to you and Josh. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2001 Report Share Posted October 23, 2001 Hi Diane , and dad! Sounds like you diane have a very healthy and incontrol attitude about this JRA! I hope jamie's remission is just having an off week....:):)I have a friend here in kentucky that has JRA (my son says she has invisible arthritis) her experience is that she enjoys a year of remission then has a flare, she deals with it a bit then walks into remission again . She's had a pattern of doing this for many many years now. So I hope will have another successful remission on the horizon. Also I too have burning in my eyes with a fever, Opthamlogist said it was due to a bit of dehydration that occurs when I have a flare. They burned most when I closed them, he recommended simple artificial tears and to get plenty of fluids during times of swelling....I now holds true that burning eyes is the first clue that I have a low grade fever, which I do often. Hope this helps ! Bless you all and stay strong! :):)Tree:):) 's flare Hi everybody- As some of you know, my daughter (2 1/2) has pauci, but has been inremission for just shy of one year. She flared this weekend. She waspreviously only affected in her right knee, but both her knee and her leftelbow swelled up. She was walking funny in the morning on Saturday. I keepasking her if anything hurts and she says no, which seems kind of strange.Then before she went to bed, she started screaming that her eyes hurt. Shehad a fever. We all have colds (or anthrax or smallpox or something). I'mhoping it was just a headache or eyes burning from the fever. She was justat the eye doctor's two weeks ago and everything was okay. I guess we'll bestarting the rounds with drs. again. Sunday and this a.m., she seemed to be walking okay. Maybe a slight limp-- hard to say. Still some swelling, but nothing major. This is weird to mebecause before when she flared, it continued unabated for 6 mos. Anyway, I've thought about how I'd handle this if it came back, andthought I'd be a basketcase after having seen the difference in her withsymptoms and with none. I'm surprisingly calm and accepting (so far). Ithink much of that is due to this group. My husband didn't understand why Icontinued to keep up with all these emails when was fine. This is why.I thought it was important to remember she still has the disease and itcould come back, and I wanted to be prepared if and when it did. So, we'lldeal with it. But it is a bummer. We had a great year.Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2008 Report Share Posted November 4, 2008 So sorry to hear that is hurting. It never gets easier seeing your child in pain. Hopefully this flare will be short. Take care. Sophie > > Sat a.m. awoke early with a level 10 pain in her left hip, radiating to her knee. With pain meds and heating pad, she slept a bit more, but again the pain awoke her. On-call nurse and rheumy insisted we take her directly to ER to rule out infection in joint. After x-ray, lab testing, physical exam, meds for pain control, they said they felt it was a bad flare but not an infection and sent her home on pred and more pain meds. She has now developed her rash covering her thighs, a scarlet rash across her cheeks (no fever), and more joints involved, with her pain level back to 9-10 this afternoon. Her rheumy is out of town for a week+ but my rheumy said to take her back to ER for shot of steroids and pain control....we are waiting for my older nieces to get home from school to watch the toddler... > > Too often (99%) the drs at this ER seem lost as to what to do with jra/pidd pts.... > would appreciate prayers for wisdom for the dr, a nurse with a touch of compassion, but mostly some relief for 's....(she hates the hospital and hates the ER, so for her to be willing to go twice in 3 days....she is in agony...) > > Thank you... > > nancy (amanda, poly) > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2008 Report Share Posted November 4, 2008 Hi , Gosh Darn it! I am so sorry to hear that is having such a rough time right now. I know here in Iowa we are coming into the " Sick " season and we avoid the ER here in town like the plague!! They know nothing about PIDD or JRA so it is a toss up as to whether or not we are going to just make things worse by simply showing up there for help. At the Children's Hospital (in Iowa City) there is always a Rheumatologist on call, usually though it is a senior resident and almost always someone we have never met before. The problem is having both PIDD and JRA they are all afraid to touch Maggie without first consulting with her Peds Rheumy and or Peds Immunologist, which brings us back to square one! I know that Maggie ALWAYS has red cheeks from the Prednisone, but the other rashes she has only had because her arthritis is systemic, since the Kineret those have seemed to be under control more now. It never fails that when we need our doctor's most they are off on that day, ours is usually out of town or even out of the country. We do however have her email and that has been a blessing many times for us. We shoot her an email and she gets back to us within a few hours on what to do. We will be saying extra prayers for , hopefully this flare will be short lived!! Take care !! Big hugs from Diane and Maggie From: nancy barnes <nancyb315@...> Subject: 's flare Date: Monday, November 3, 2008, 10:46 PM Sat a.m. awoke early with a level 10 pain in her left hip, radiating to her knee. With pain meds and heating pad, she slept a bit more, but again the pain awoke her. On-call nurse and rheumy insisted we take her directly to ER to rule out infection in joint. After x-ray, lab testing, physical exam, meds for pain control, they said they felt it was a bad flare but not an infection and sent her home on pred and more pain meds. She has now developed her rash covering her thighs, a scarlet rash across her cheeks (no fever), and more joints involved, with her pain level back to 9-10 this afternoon. Her rheumy is out of town for a week+ but my rheumy said to take her back to ER for shot of steroids and pain control.....we are waiting for my older nieces to get home from school to watch the toddler... Too often (99%) the drs at this ER seem lost as to what to do with jra/pidd pts.... would appreciate prayers for wisdom for the dr, a nurse with a touch of compassion, but mostly some relief for 's.... (she hates the hospital and hates the ER, so for her to be willing to go twice in 3 days....she is in agony...) Thank you... nancy (amanda, poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2008 Report Share Posted November 4, 2008 Hi : We are sending gentle hugs to both of you. I feel so badly for . I wish there was a better alternative to the ER for you. I know you have not had good luck there. We will say extra prayers for all of you. Give me a call one night this week if you need to talk. Miss you guys!!!! Hugs to all. Beth & Hannah, 12, unspec arthritis; asthma; gerd; migraines; ulcers; vit D deficiency Sending prayers & happy thoughts, Beth 's flare Sat a.m. awoke early with a level 10 pain in her left hip, radiating to her knee. With pain meds and heating pad, she slept a bit more, but again the pain awoke her. On-call nurse and rheumy insisted we take her directly to ER to rule out infection in joint. After x-ray, lab testing, physical exam, meds for pain control, they said they felt it was a bad flare but not an infection and sent her home on pred and more pain meds. She has now developed her rash covering her thighs, a scarlet rash across her cheeks (no fever), and more joints involved, with her pain level back to 9-10 this afternoon. Her rheumy is out of town for a week+ but my rheumy said to take her back to ER for shot of steroids and pain control....we are waiting for my older nieces to get home from school to watch the toddler... Too often (99%) the drs at this ER seem lost as to what to do with jra/pidd pts.... would appreciate prayers for wisdom for the dr, a nurse with a touch of compassion, but mostly some relief for 's.... (she hates the hospital and hates the ER, so for her to be willing to go twice in 3 days....she is in agony...) Thank you... nancy (amanda, poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 5, 2008 Report Share Posted November 5, 2008 , So sorry to hear that is flaring and so badly. I will pray that things will turn around soon for her so she can have some relief.? I know this is so hard on you as well.? I am sure you will keep us informed as to how she is doing.? Veri & Jaye 14 poly 's flare Sat a.m. awoke early with a level 10 pain in her left hip, radiating to her knee.? With pain meds and heating pad, she slept a bit more, but again the pain awoke her.? On-call nurse and rheumy insisted we take her directly to ER to rule out infection in joint.? After x-ray, lab testing, physical exam, meds for pain control, they said they felt it was a bad flare but not an infection and sent her home on pred and more pain meds. She has now developed her rash covering her thighs, a scarlet rash across her cheeks (no fever), and more joints involved, with her pain level back to 9-10 this afternoon.? Her rheumy is out of town for a week+ but my rheumy said to take her back to ER for shot of steroids and pain control....we are waiting for my older nieces to get home from school to watch the toddler...? Too often (99%) the drs at this ER seem lost as to what to do with jra/pidd pts.... would appreciate prayers for wisdom for the dr, a nurse with a touch of compassion, but mostly some relief for 's....(she hates the hospital and hates the ER, so for her to be willing to go twice in 3 days....she is in agony...) Thank you... nancy (amanda, poly) Quote Link to comment Share on other sites More sharing options...
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