Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Hi all: My daughter Olivia had a follow-up with the rheumatologist today. She had two joints affected (her wrist and one knee) however they were not tender to touch or stiff. The doctor was just able to palpate some swelling. We will begin weaning her off the prednisone tomorrow (15mg down from 20) and give them an update in two weeks. She continues to be on Naprosyn twice daily. Her spirits are good and she has been back to school for two days. Fortunately her diagnosis and flare were during the xmas vacation. Depending on how she responds to weaning the steroids is when or if they will decide to start methotrexate. I am trying to be positive. Please wish us luck. Will keep you posted. petra hurt Petra's questions > > > > > > Hi Petra: > > > I am sorry for all the fear and pain you are feeling for your daughter > > > right > > > now. I think everyone on this list can relate to it and sympathise. > > > My daughter Mickey (short for Mickaela) is going on seven now and was > > > diagnosed at 3 with systemic onset jra. She has been on prednisone in > > > varying amounts since the beginning. I'm fairly certain the disease had > > > become active nearly a year previous to diagnosis, but the doctors in > our > > > small town (and a pediatrician in a nearby smallish city) did not > > > recognise > > > it until she became unable to walk. The diagnosis, initially > (ironically) > > > came as something of a relief, I had been so worried for so long with > the > > > high fevers, lethargy - I won't go into it all, but the doctors here > > > hadn't > > > taken my worries about her seriously for a long time and I was furious > > > with > > > their brush-offs. Anyway, she had become severely anaemic (from the > fevers > > > and inflammation, I'm guessing) and they put her on 20mgs/day of > > > prednisone > > > to get her fevers and symptoms (swollen ankles and one knee) under > > > control. > > > She has been on it ever since, though the docs (and us) try constantly > to > > > reduce it she has flared badly every time she has gone below 5mg/day. > She > > > has just gone down to 4 so I am keeping my fingers crossed. > > > Mickey is also on methotrexate injections once per week. We had started > > > with > > > the oral metho but it made her quite nauseous and miserable - the > > > injections > > > upset her a bit but the side effects are significantly reduced. She also > > > takes 3mg of indomethacin 3x/day, and cytotec to protect her stomach. > > > > > > I remember in the beginning, I had a period of time where I didn't > realise > > > how serious a disease arthritis could be for children, but that didn't > > > last > > > long... I had been so relieved it wasn't the other possibilities > suspected > > > when they finally did blood tests and got her sed rates, etc. But the > more > > > I > > > read - well, I think we all probably go back and forth between > resignation > > > with determination to learn as much as we can to help our kids, and > anger > > > at > > > the " fates " for their pain and suffering, anger at the medical > > > establishment > > > for not knowing more than they do - I wanted ANSWERS! - how did this > > > happen > > > to my child? what caused this? why can't they 'fix' it? - > > > Sometimes I feel such an overwhelming sense of helplessness, and anger > at > > > myself - could it be something I exposed her to? (she'd gotten a severe > > > giardia infection from a wilderness camping trip I'd taken her on when > she > > > was only 16 months old) - and more anger that I couldn't find any > answers, > > > or even books to help 'explain' this disease. I've read SO much - as if > I > > > could find answers in printed books that the VERY good doctors at > Toronto > > > Sick Kids had somehow missed. I guess that's a sort of denial - or > looking > > > for at least an illusion of control... > > > I have days of crying and crying (when she's not around to see it) from > > > the > > > overwhelming pain of not being able to do anything to change her disease > > > for > > > her - but mostly I put my energy into trying to teach her to be strong > and > > > positive and determined. I try to show her that no matter what life > throws > > > at us - we can choose to meet it with determination to make the best of > > > the > > > strengths we've got, the gifts we've got. To go after what we want in > life > > > with courage and hope, no matter what the obstacles seem to be. > > > So much of this disease is out of our control, (even if you're a > research > > > medical professional) and the best I can do is set an example for Mickey > > > to > > > remain positive and optimistic and make the best of the gifts each day > > > brings us. Live in the now (that sounds so cliché, but is so true) and > > > remain grateful for the positive things we've got. > > > > > > I've really gone on and on and I probably haven't answered your > questions, > > > really. > > > > > > Mickey is on weekly injected methotrexate, and yes it did make a big > > > difference, we were able to significantly reduce the prednisone once she > > > started on it. The indomethacin has remained unchanged since the > > > beginning. > > > I understand that with systemic kids, the inflammation and the active > > > swelling of arthritis in the joints are treated almost as separate > issues. > > > While none of the drugs actually 'cures' or changes the arthritis, the > > > symptoms of it can largely be controlled with a variety of drugs. Yes, > the > > > side effects are very worrisome. She has also undergone many joint > > > injections and aspirations, which is scary but amazingly and > > > instantaneously > > > effective. She was on naprosyn in the beginning for a while, but it was > > > hard > > > on her stomach, she developed occult blood in the stool and they > switched > > > to > > > indomethacin and added the cytotec. > > > But regardless - without the drugs Mickey would be unable to walk, or go > > > to > > > school, or have any 'quality of life' at all. She is very stoic and so > far > > > does not question the meds she has to take, she remembers the year > before > > > diagnosis and prefers the 'yucky medicine' and 'nasty needles' to no > being > > > able to run and play and swim - and have a 'normal' life with her > friends. > > > She is smart and plucky and brave and outgoing and funny and thoughtful > > > and > > > determined and wonderful (I'm biased, of course) and so I count our > > > blessings and try to stay educated and informed to be a good advocate > for > > > her. > > > > > > Some kids only flare a few times and then do go into 'permanent' > > > remission. > > > We haven't been that lucky, but your daughter is young, as Mickey was, > and > > > they are amazingly stoic and accepting of the meds. As far as she is > > > concerned she does have a 'normal' life. It is a scary and horrible time > > > right now for all of you, but our doctors are wonderful and research is > > > ongoing, and as hard as some days are, there are good reasons to be > > > optimistic. Hang in there, you will go through many cycles of emotion as > > > you > > > adjust to this new 'reality' in your lives but it will get better as > time > > > passes. I'm starting to sound like a cliché again, so I'll sign off. > This > > > site/board - this group! are all wonderful sources of information and > > > support, and though I don't 'post' as much as I'd like due to time > > > constraints, I read the posts every day and have found much comfort and > > > strength in the words and generously shared stories of those who come > > > here. > > > Keep reading these Petra, and I'm sure you will find the same sort of > help > > > and information and comfort that you need right now. > > > > > > Lynn > > > > > > > > > Petra Hurt wrote: > > > > > > > > Hi all, > > > > > > > > I am joining this group because my four year old daughter was just > > > diagnosed > > > > with systemic jra after a viral infection, high fever. She is being > > > treated > > > > by a pediatric rheumatologist at Children's Hospital of Michigan. I > > > feel > > > > relatively comfortable with her, however I am terrified of what this > > > > diagnosis means. She is currently on Prednisone to treat the acute > > > > symptoms. One week ago, she was unable to walk or feed herself > without > > > > excruciating pain. Today, she appears perfectly normal. She will be > > > > reevaluated in about 5 days by the rheumatologist. > > > > > > > > Has anyone's child been on methyltrexate? That is one of the drugs > > > talked > > > > about as well as naprosyn. I am terrified that she will end up on > > > chronic > > > > steroid therapy. I cried for the first week after her diagnosis. She > > > is > > > a > > > > very active and bright little girl. I am trying to educate myself to > the > > > > realities of this disease as well as to pray for strength and wisdom. > Is > > > it > > > > possible that she may never have any more problems? Is it possible > for > > > her > > > > to lead a normal life? I would appreciate any feedback from anyone. > I > > > live > > > > in Rochester Hills, Michigan. > > > > > > > > Petra Hurt > > > > > > For links to websites with JRA info please visit: > > > <http://www.geocities.com/Heartland/Village/8414/Links.html> > > > > > > To manage your subscription settings, visit: > > > <subscribe/ > > > > > > > > > > > > > > > > > > > eGroups Sponsor > > > Wireless web technology from Motorola > > > > <http://rd./M=158221.1056240.2800998.2/D=egroupmail/S=1700126171: > > > > N/A=501840/*http://ads09.focalink.com/SmartBanner/page?398.7011-978532976> > > > > > > > > > For links to websites with JRA info please visit: > > > <http://www.geocities.com/Heartland/Village/8414/Links.html> > > > > > > To manage your subscription settings, visit: > > > <subscribe/ > > > > > > > > For links to websites with JRA info please visit: > > http://www.geocities.com/Heartland/Village/8414/Links.html > > > > To manage your subscription settings, visit: > > subscribe/ > > > > > > > > For links to websites with JRA info please visit: > http://www.geocities.com/Heartland/Village/8414/Links.html > > To manage your subscription settings, visit: > subscribe/ > Quote Link to comment Share on other sites More sharing options...
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