Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Hi all Haven't been around for a bit, but I understand exactly where Lynn is coming from. It is common to underestimate the disease and until you've lived with it you never can really explain to strangers what it is like. It is easy to let the disease overwhelm you, and then you think you've got it sorted, and then it comes back. Real day at a time stuff. I have a question though - my daughter (7 this year) is also on prednisone, methytrexate and vioxx - she has very bad dry skin on her wrists and feet - does this sound familiar to anyone? Ady Ogilvie " What day is it? - 'It's today' - squeaked Piglet. 'My favourite day' - said Pooh. " A.A. Milne > 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/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Hi Ady! My son Jonnathon (almost 3) is also on mtx and vioxx (has been off the pred for almost a year). He has had very dry hands and feet also, especially in winter. Much better now that he isn't taking the steroid anymore. Possibly a connection?? I found that using the baby magic wash instead of soap helps...smells good too!! How long has been on the vioxx? Jonnathon has been taking it since Aug of '99, when the liquid suspension was FDA approved. Does she do well on it? I am frightened since I heard about all the deaths they are attributing to vioxx, especially since it hasn't been tested in kids. What are your thoughts about it? Donna (mich) 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/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Petra... I just now read your entry ...... I live in Auburn Hills!!! My son Jonnathon sees Dr down at Children's, and has been seeing her for over 2 years.(he is almost 3 yrs old) She really is wonderful, so rest assured that you are in good hands. I will write more soon, when the kids aren't screaming at me!! Perhaps we can keep in contact. It would be nice to have someone in the neighborhood to talk to. Best of luck to you!! Donna 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/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 Ady, My son is on those medications and he also gets very itchy especially on his back. I think its the meds and the condition. I also think the climate is a big factor (its cold now and he is even more itchy). Believe me I have tried everything and still do not have a solution as to what can help him with the itchiness. , >From: Adrienne Ogilvie <aogilvie@...> >Reply- egroups > " ' egroups' " < egroups> >Subject: RE: Petra's questions >Date: Wed, 3 Jan 2001 16:55:27 +0200 > >Hi all > >Haven't been around for a bit, but I understand exactly where Lynn is >coming >from. It is common to underestimate the disease and until you've lived >with >it you never can really explain to strangers what it is like. It is easy >to >let the disease overwhelm you, and then you think you've got it sorted, and >then it comes back. Real day at a time stuff. > >I have a question though - my daughter (7 this year) is also on >prednisone, methytrexate and vioxx - she has very bad dry skin on her >wrists >and feet - does this sound familiar to anyone? > >Ady Ogilvie > " What day is it? - 'It's today' - squeaked Piglet. 'My favourite day' - >said >Pooh. " A.A. Milne > > > > 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/ > > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2001 Report Share Posted January 3, 2001 In a message dated 01/03/2001 8:37:41 AM Pacific Standard Time, ddwebb1@... writes: > ?? I found that using the baby magic wash instead of soap > Castile soap ( found in health food stores ) is also good, 100% natural made from vegatable oil. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Hi all Thanks to everyone for their helpull hints, I'm off to the shops! Ady Ogilvie " What day is it? - 'It's today' - squeaked Piglet. 'My favourite day' - said Pooh. " A.A. Milne > Re: Petra's questions > > In a message dated 01/03/2001 8:37:41 AM Pacific Standard Time, > ddwebb1@... writes: > > > > ?? I found that using the baby magic wash instead of soap > > > > Castile soap ( found in health food stores ) is also good, 100% natural > made > from vegatable oil. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Hi Donna Meg has been on Vioxx since July 99 - I must confess that I missed the vioxx scare - what was it all about? I've been on holiday at the coast for a bit..... It isn't a very comforting thought at all is it, especially if it was approved. Also wondering if athan does a lot of swimming? Maybe that can also contribute to the dryness? The soap you mentioned - what are it's ingredients? I don't think I can get it where I live! thanks, look forward to hearing your thoughts... Ady Ogilvie aogilvie@... " What day is it? - 'It's today' - squeaked Piglet. 'My favourite day' - said Pooh. " A.A. Milne > Re: Petra's questions > > Hi Ady! > My son Jonnathon (almost 3) is also on mtx and vioxx (has been off the > pred > for almost a year). He has had very dry hands and feet also, especially > in > winter. Much better now that he isn't taking the steroid anymore. > Possibly > a connection?? I found that using the baby magic wash instead of soap > helps...smells good too!! How long has been on the vioxx? > Jonnathon > has been taking it since Aug of '99, when the liquid suspension was FDA > approved. Does she do well on it? I am frightened since I heard about > all > the deaths they are attributing to vioxx, especially since it hasn't been > tested in kids. What are your thoughts about it? > Donna (mich) > 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/ > > > > > > > > > > eGroups Sponsor > > Plan the wedding of your dreams! Click here.Plan the wedding of your > dreams! Click here. > <http://rd./M=55482.472208.2854826.2/D=egroupmail/S=1700126171:N/ > A=260661/*http://ad.doubleclick.net/jump/N924./B16468.12;sz=468x60;or > d=978539793?> > > 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...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Hi there only started the dryness towards the end of our winter last year but she does get much worse pain in winter and more flares that happen. I got a bit of a fright last year - our physiotherapist did a check up on her and because she spends a lot of time curled up (because she is sore), she needed a couple of sessions to help her muscles " losen up " a bit. Then she started taking prednisone and there was a remarkable improvement..... I've read a lot about itchiness being a problem with many of the kids here. Megs hasn't had it, but then again, this disease is dreadfully sneaky isn't it? Our children certainly have more than their fair share to deal with. thanks Ady Ogilvie " What day is it? - 'It's today' - squeaked Piglet. 'My favourite day' - said Pooh. " A.A. Milne > 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/ > > > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com > > > 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...
Guest guest Posted January 4, 2001 Report Share Posted January 4, 2001 Ady... Apparently 11 reported deaths in the UK related to Vioxx in past 2 months. Jonnathon's rheumy poo-poos it, saying they were all older patients anyways. Still!!!! I can't help but to be worried. Jonnathon switched to Vioxx after developing bleeding ulcers from the Naproxyn, so perhaps I am paranoid. The deaths are from GI problems and from heart attacks. I tried to find out more, like how long these people were on Vioxx, etc...like maybe they were part of the test group or something, but I came up with nothing new. As for the FDA approving it, look how long we had PPA, and now the FDA no longer approves it....needless to say, I am not overly confident with the FDA. Jonnathon doesn't swim , he is deathly afraid of any water other than a bath!! I would push it with him, except that there are no pools around that aren't filled with kids, and I keep him pretty sheltered because of the meds. So, I don't know why he gets dry, but we do live in Mich, and I am always dry too. The soap is just the wash we use for babys. Comes in a yellow container...s Baby Magic baby wash. It is great for the whole body, hair included. You probably will find it in the baby isles. How much Vioxx does Meg take? Jonnathon takes 12.5 mg a day of the oral suspension. Hope all is well, and look forward to taking again soon! Donna Webb 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/ > > > > > > > > > > > > > > > > > eGroups Sponsor > > > > Plan the wedding of your dreams! Click here.Plan the wedding of your > > dreams! Click here. > > <http://rd./M=55482.472208.2854826.2/D=egroupmail/S=1700126171:N/ > > A=260661/*http://ad.doubleclick.net/jump/N924./B16468.12;sz=468x60;or > > d=978539793?> > > > > 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...
Guest guest Posted January 5, 2001 Report Share Posted January 5, 2001 Hi Ady: Yes, Mickey has this dry, rough, and discoloured (looks like a dark tan starting to peel, almost) on her wrists, backs of her hands and sometimes her feet. The docs at Toronto Sick Kids have taken note of it and said they have noticed it in a few of their patients, mostly systemic kids. It is worse in winter but seems to come and go without a lot of predictability. The docs aren't sure if it meds related, or flare related - or what, really. They/we just keep track of it to see if any patterns show up. I loved your Pooh/Piglet (or I guess credit should go to AAM!) quote. Have you ever read the Tao of Pooh or the other one (forget exact title) of Piglet? They're good, too. Lynn 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/ Quote Link to comment Share on other sites More sharing options...
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