Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Hi , Thanks for your message. It's nice to have you with us I've found it very helpful to hear about things from a different perspective. From someone who has been on the receiving end, so to speak. Helps us parents be able to understand better what it may be like for our children. I hope your recent surgery went well, that you're healing well, and that you'll have lots less pain and better mobility. And thanks again for being willing to help us out Take Care, Georgina lainewilliam@... wrote: > > Dear Georgina, > Hi there. My name is . I have had Juvenile Arthritis for over 15 > years. I am now 21 and have had my first hip replacement two weeks > ago. your son, Josh, sounds so much like me - I've already been down > the road he seems to be heading on - with low heamoglobin, loads of > the lovely prednisone, and methotrexate. > > If there is anything I can do to help, or if you have any questions > regarding anything, feel free to write. I am a pro when it comes to > dealing with this disease as I've spent my whole life in one big > adjustment to it. I've just jumped into this whole chat thing, so I > haven't read anything on his history, but if I could make a > suggestion...methotrexate is much better absorbed into the > bloodstream if it is taken subcu( by needle). I'm taking 25mg every > Sunday by needle and it's much easier on my stomach, and much more > beneficial thatn in the pill form. > Good luck, I wish you the best. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 Hi Teri, Thanks Having these periods of relative wellness certainly does make facing those harder times a little bit easier. If it happens once, it can happen again. Somebody here used the phrase, " cautious optimism. " That's exactly right! Optimistic that things will remain stable. At least for the time being ... maybe indefinitely? We're very hopeful. Only time will tell. How's doing these days? I hope she's still doing great Pretty soon her birthday is coming up, isn't it? Yup. Just checked the birthday chart to be sure. ( /files/BirthdayInfoChart.html ) I'll have Josh and Kayla help me pick out an email card to send her. Do you guys have any special plans? Will she be having a party? I'm not even up-to-date with what the big themes are for the younger ones, these days. I guess Barney and Pokemon are passé? For Josh's last birthday he wanted just a color scheme. Red and Black, like his school colors. That was very easy Well, thanks again for your encouragement. And give a hug from us. Take care, Georgina Teri wrote: > > Georgina, > Great news!! > Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2001 Report Share Posted June 26, 2001 katie.. what type of JRA do you have? my daughter has poly. she was diagnosed in oct. and is 6... kellie and jessica >From: lainewilliam@... >Reply- > >Subject: Re: 's Update, etc. >Date: Mon, 25 Jun 2001 04:41:46 -0000 > >Dear Georgina, >Hi there. My name is . I have had Juvenile Arthritis for over 15 >years. I am now 21 and have had my first hip replacement two weeks >ago. your son, Josh, sounds so much like me - I've already been down >the road he seems to be heading on - with low heamoglobin, loads of >the lovely prednisone, and methotrexate. > >If there is anything I can do to help, or if you have any questions >regarding anything, feel free to write. I am a pro when it comes to >dealing with this disease as I've spent my whole life in one big >adjustment to it. I've just jumped into this whole chat thing, so I >haven't read anything on his history, but if I could make a >suggestion...methotrexate is much better absorbed into the >bloodstream if it is taken subcu( by needle). I'm taking 25mg every >Sunday by needle and it's much easier on my stomach, and much more >beneficial thatn in the pill form. >Good luck, I wish you the best. > > > _________________________________________________________________ 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 June 27, 2001 Report Share Posted June 27, 2001 Goood People born in July! Happy Birthday Emmy! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 Hi Teri, Wow! I'm so happy to hear the news about That's terrific. I know how excited I am when Josh's physical health is stable, when he's in a medicated remission. It's such a relief to finally find the right combination of things to control this disease and be able to watch our children enjoy life without the pain and struggle of JRA. So you know it's very encouraging to hear about the children who actually reach that stage and even surpass it, by being able to stay in remission med-free! I hope 's next doctor appointment goes well. It must be such a good feeling for the rheumatologists to see their patients doing well. Very rewarding. Ahh... Winnie the Pooh! Yes, he's still an all-time favorite. I hope has a terrific birthday Take care, Georgina Teri wrote: > > Georgina, > continues to great. Absolutely no signs of the JRA. She > runs and jumps just like any other kid. The naprosyn was finished on > June 9th(my sisiters wedding day). goes back to the rheumy on > July 23rd I believe. > Emmy's birthday is July 9th. My son Josh and I made the > invitations on the computer. The theme of the party is Winnie the > Pooh. We are having a smaller party(cookout) this year > Hopefully Josh will remain stable indefinately. I am so glad > there has been an improvement!! > Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 Hooray for and your family!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Tabitha is sixteen and I would love for the arthritis to go away...even for a little while...but it has taken a toll on her body...doubt if it would completely go away...but thank goodness she isn't hurting as much as she was during the winter...she sure is tired and achy...doesn't want to get up today..well have a good day..and congrads...!!!!!!!!!!!!!!!!!!!!!!!!! karen and tabitha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2001 Report Share Posted August 1, 2001 Thanks, Teri. I hope continues to do well, too. And all the best to you, when you return to school in the fall. What will you be studying? Take care, Georgina Teri wrote: > > Georgina and Josh, > Great news about the predisone being decreased!!! Keeping > our fingers crossed for you too. > Teri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2001 Report Share Posted August 1, 2001 Hi , Oh, I sure hope so. Little by little, slowly but surely. We've had such a hard time tapering down that even though it's something I always look forward to, it still makes me a little nervous and kind of brings back memories of our failed attempts in the past. Even when reducing in just tiny 1mg increments. Josh never seemed to be able to manage on alternate day either (but I think maybe that's because we didn't try it soon enough). Wasn't our doctors who even suggested that but rather Dr. Gotlieb in South Africa, better known in these parts (the internet) as Doctor Doc Wish I had known about that earlier. Might have saved us a lot of grief. This morning when Josh first got up (around 9am) he was feeling hot and sweaty. Strange, because he was never one to really sweat much. Said he felt dizzy and his hands were shaky, too. When I took his temperature I got a little worried. I had sort of expected that he might have a fever but instead, it was 96.7. He had breakfast and took his meds but he was still not feeling too well. Just wanted to take it easy. Laid down on the couch and fell asleep for a couple more hours. Meanwhile, I spoke to his pediatrician and his rheumatologist's nurse. The nurse said it may have been that his glucose level dropped in the night, since he hadn't eaten since dinnertime (about 6:30 last night), that that might cause those kinds of symptoms and not necessarily just the prednisone reduction. The doctor said his core temperature was probably still normal but that I got that reading because I took his temp orally, and to make sure that he had plenty liquids throughout the day, that maybe he was coming down with something. By around noon, he was looking and feeling a lot better. So, who knows. We'll see what happens. I just hope it doesn't become a pattern. You know how that goes, though. Take care, Georgina PS ... Josh and I tried to send Elliot an email birthday card in the beginning of July. Came back to me twice, though? I sure hope he enjoyed his special day. charles_c_s@... wrote: > > Georgina: > That's great news! > Hope Josh gets to 0 mg soon!! > Best regards. > Charlie Quote Link to comment Share on other sites More sharing options...
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