Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Colleen - mom to Caitlin, 6 I am glad you found it very informative and enjoyed your selfs. I hope you were one of the parents that I was gabbing with at pool side, as I made a point of trying to talk to all I good. Especially when ever I heard conversation where the topic was arthritis meds. I was the guy with the shoe braces! Hope to see you and next years conference in Rhode Island. Rusty O'Limbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Hi Colleen, I met you at the round table discussion on SoJRA.You guys have been through the ringer,for sure.I hope you are approved for the Humira and that it works!! You are a very,well educated mom about this disease but I know you will still find this list useful.Sometimes you just need to vent and whine to others that know what you are going through. Welcome aboard. Becki and 6 systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Colleen, Welcome to the group. It seems the folks must have spread the word around about this great group at AJAO. There are many parents here of systemic kids, so there is lots of experience here. My daughter is 15 with systemic the last five years. She was under pretty good control until this last February. She is on naprosyn, plaquenil, folic acid and mtx. Again, welcome. (n, 15,systemic) New mom- systemic jra > Hello all- > I attended the AJAO conference this past weekend and learned about > this list. I'm glad to have the opportunity to share with some more > folks in the same boat! > My daughter is six and was dx systemic jra three years ago. She's > been on pred, MTX, leucovorin and naprosyn continually since then. > We have also tried Enbrel, Remicade, Kineret, cyclosporine, oral > gamma-globulin (clinical trial) and cytoxan. We're still looking for > the key to controlling her condition.... but we were blessed with a > speedy diagnosis and we see great pediatric rheumatologists. Two of > our docs spoke at the conference.... If we are approved, we'll be > trying Humira next. > Anyway, I'm glad I found this group! > Take care- > Colleen - mom to Caitlin, 6 > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 Welcome Colleen. Glad you found the list. There is lots of info and support here. Where are you located? Sounds like the drs are really being aggressive with treatment - what a good thing. Good luck to you and Caitlin. Michele ( 17, pauci & spondy) New mom- systemic jra Hello all- I attended the AJAO conference this past weekend and learned about this list. I'm glad to have the opportunity to share with some more folks in the same boat! My daughter is six and was dx systemic jra three years ago. She's been on pred, MTX, leucovorin and naprosyn continually since then. We have also tried Enbrel, Remicade, Kineret, cyclosporine, oral gamma-globulin (clinical trial) and cytoxan. We're still looking for the key to controlling her condition.... but we were blessed with a speedy diagnosis and we see great pediatric rheumatologists. Two of our docs spoke at the conference.... If we are approved, we'll be trying Humira next. Anyway, I'm glad I found this group! Take care- Colleen - mom to Caitlin, 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Hi Colleen: Welcome to the group. You will find a great support system here. My daughter, Caitlin, has Still's Disease also. She is now in remission and doing wonderful. I hope they find the right combination of meds to help your daughter get better. When will you hear about the approval for Humira? Take care. Patty Quote Link to comment Share on other sites More sharing options...
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