Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 Hi, I'm forwarding this message from a new member. Welcome, . Yes, your son's story does sound somewhat familiar. Very much like my own son's, except that he had joint inflammation and the occurrence of rash to go along with the cyclical high fevers and other problems. Has your child been seen by a pediatric rheumatologist yet? See if you can get a referral. They're very familiar with this somewhat uncommon rheumatic illness and may be able to help sort through some of the confusion. Starting the journal to make note of any symptoms is a great way to help keep track of things on a daily basis and be able to report accurately to the doctors. I hope you can get some positive answers soon, as I remember quite vividly how difficult the period of not knowing is. If they are at least able to rule out other serious illnesses you will have some peace of mind. There is no cure for JRA but there is hope. The first step is trying to determine if this is, in fact, what your son has. If it turns out Troy does have JRA there are helpful treatments available. Good Luck, Georgina GROTERS wrote: > > My son Troy who is 6, has been sick with fevers for over 3 months. We are > working with his pediatrician an Immunologist and an hematologist. They all > think he has Systemic JRA. They have not " Officially " said they have a > diagnosis because he is not experiencing rash or joint inflammation. He has > been on Naprosyn for about 2 months and it is helping some. He has become > anemic also and the iron supplements are not changing the blood counts. He > goes tomorrow for an MRI of his head and Monday for a bone marrow test and CTs > for his chest, abdomen and pelvis. They are ruling out the possibility of a > hidden tumor. > > This has been a very trying time for us. I am definitely scared about what > the future holds. Does any of this sound familiar? I am told that this type > of JRA can be the most difficult to sort out. I keep a daily journal of his > temps and any symptoms and call the Doctors all the time with information. > Should I be doing something more at this time? > > > > >===== Original Message From Moderator < -owneregroups> > ===== > >Hello, > > > >Welcome to the ! I am glad you found our list and > >I want to extend my warmest greetings. Egroups certainly does > >make things very simple, even for those of us who don't have a lot of > >computer experience. So jump right in, whenever you feel ready. You > >can introduce yourself, tell us about your child's medical history, ask any > >questions that you may have, add to the topic of discussion, or talk about > >whatever's on your mind. You can choose to write as much or as little > >as you feel is appropriate. As often as you want. Some days there's lots of > >posts, other days it's pretty quiet. > > > >I hope you'll find this email list to be both informative and enjoyable. > >Everyone on the list either has or knows a child who has JRA. My interest > >in this topic began when my son, , was diagnosed with Systemic > >Juvenile Rheumatoid Arthritis, back in May of 1995. As parents and > >caregivers, I believe it's important for us to learn as much as we can > >about this illness. It's very helpful, in terms of understanding how our > >children are affected and in learning strategies for coping effectively > >with the uncertainties we sometimes face. > > > >The internet has been a very valuable source of information, > >support and friendship for me. I am very grateful to have met others online > >whose children also have this illness. Somehow, it makes things a > >little bit easier. Though we may be many miles apart and facing different > >stages and severities of illness, we do share a common bond. It's nice > >to be able to discuss things with others who understand what we're > >going through and who may have already been through the same > >situations. I'm always looking around online for articles that may be > >of interest to us, news about medicines, treatments, etc. I hope to be able > >to share what I have learned and to continue learning. And I hope > >that you, too, will find it to be be a very positive and friendly experience. > > > > > >Once again ... WELCOME! > > > >Hoping all is well with you and your families, > >Georgina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2000 Report Share Posted December 14, 2000 Georgina, Thank you!! I will check on the Ped. Rheumatologist!! >===== Original Message From egroups ===== >Hi, > >I'm forwarding this message from a new member. Welcome, . > >Yes, your son's story does sound somewhat familiar. Very much like my >own son's, except that he had joint inflammation and the occurrence of >rash to go along with the cyclical high fevers and other problems. Has >your child been seen by a pediatric rheumatologist yet? See if you can >get a referral. They're very familiar with this somewhat uncommon >rheumatic illness and may be able to help sort through some of the >confusion. Starting the journal to make note of any symptoms is a great >way to help keep track of things on a daily basis and be able to report >accurately to the doctors. I hope you can get some positive answers >soon, as I remember quite vividly how difficult the period of not >knowing is. If they are at least able to rule out other serious >illnesses you will have some peace of mind. There is no cure for JRA but >there is hope. The first step is trying to determine if this is, in >fact, what your son has. If it turns out Troy does have JRA there are >helpful treatments available. > >Good Luck, >Georgina > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2001 Report Share Posted January 2, 2001 My goodness Georgina! Is it me? Or are we being deluged with a very high ratio of Systemic cases this month? Here I thought Systemic was the rarest condition, now I bet it is looking like the most common form here in our list. Petra, Please know you are so very welcome here. The not knowing factor is such a hard thing to deal with, but somewhere on this list is someone else who has been where you are headed. We will pray that your childs case will be minor and go into remission soon. God bless and take care. [ & Skyler] PS ask lots of questions! [Fwd: Welcome to ] Hi Petra, This came directly to me instead of to the JRA list. I'm forwarding it on so that everyone can read your message and respond. I understand the fears and worries you have. Hopefully the messages you read here will not only help to answer some of your questions but also help you come up with more questions, to ask your daughter's doctor about. It's getting late, so I can't write much right now. I'll be back tomorrow, though. And I'm sure you'll get feedback and responses from others here. Take care, Georgina 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 eGroups Sponsor 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 2, 2001 Report Share Posted January 2, 2001 > > > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2001 Report Share Posted January 6, 2001 Hi, Yes, there have been a lot of recent members whose children have systemic onset. I've read that between ten to twenty percent of JRA cases are systemic. I wonder what the percentages are here in our group? Take care, Georgina V. wrote: > > My goodness Georgina! Is it me? Or are we being deluged with a very high ratio of Systemic cases this month? Here I thought Systemic was the rarest condition, now I bet it is looking like the most common form here in our list. > > Petra, Please know you are so very welcome here. The not knowing factor is such a hard thing to deal with, but somewhere on this list is someone else who has been where you are headed. We will pray that your childs case will be minor and go into remission soon. > God bless and take care. > > [ & Skyler] > > PS ask lots of questions! > 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 Quote Link to comment Share on other sites More sharing options...
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