Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Good luck on Thursday ! We will be praying for good news. ne just had all of her blood work done and we see her rheumy next Tuesday. I was hoping to get her off some of the meds but with the flare she had at the conference and now she is flaring every time she bumps something, I don't think it's going to be a wise choice to take any of her meds away. Let us know how things go and give Miss Caroline a great big hug for us. Kim & ne (12 Poly) Summerhill > > > > Hi--I posted back in February about my daughter and our > > insurance struggles. I had posted many more times and recently > > realized my account was bouncing (what ever that means)! I > > reregistered and wanted to reconnect. I have been reading posts, so > > I feel like I know all of you, although I feel like a lurker, b/c I > > haven't been able to post! > > > > Anyway, my daughter has had systemic jra for three years now. She > > has had her ups and downs. She started Humira last February, and had > > her ankles injected last Tuesday. Right now she only has minor ankle > > pain, but her labs remain abnormal, so we know her arthritis is still > > around waiting to shake things up again. > > > > Since last Tuesday, after having her ankles injected, seems > > so happy. It kind of saddens me, b/c I realized that she can not be > > herself when she has active arthritis. She has had some swelling for > > over a year--first many joints, then after med changes-only ankles. > > I know I should be ecstatic that she is happy and active now, but I > > can't help but wonder how long this will last. I am trying to be > > optimistic, and she is even enrolling in dance classes in a couple of > > weeks, but I have this nagging feeling of doom. I am sure you all > > understand. I don't care if she isn't an athlete or dancer or > > whatever, but I do want her to be happy. > > > > Wishing everyone well! > > Sophie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2006 Report Share Posted August 9, 2006 Thanks Kim! I am sorry to hear that ne is in a flare, but I know that you suspected it. It will be interesting to see what the blood work says.... As for us, the Prednisone is taking a toll on Caroline and I just want to get her off. Her cheecks are nice and plump now and she's ALWAYS hungry! It amazes me that she could be feeling lousy with that much Prednisone being pumped through her body! Hopefully her eye doctor will say " All clear " - one can hope. If he does, I know we will be able to go down on the Prednisone, although I fear we will be back to that maintenance dosage of 3mg again. Ahh - the love/hate relationship continues. Lots of hugs to your guys too - Alia and Caroline, age 4, poly and uveitis > > > > > > Hi--I posted back in February about my daughter and our > > > insurance struggles. I had posted many more times and recently > > > realized my account was bouncing (what ever that means)! > I > > > reregistered and wanted to reconnect. I have been reading > posts, so > > > I feel like I know all of you, although I feel like a lurker, > b/c I > > > haven't been able to post! > > > > > > Anyway, my daughter has had systemic jra for three years now. > She > > > has had her ups and downs. She started Humira last February, > and had > > > her ankles injected last Tuesday. Right now she only has minor > ankle > > > pain, but her labs remain abnormal, so we know her arthritis is > still > > > around waiting to shake things up again. > > > > > > Since last Tuesday, after having her ankles injected, > seems > > > so happy. It kind of saddens me, b/c I realized that she can > not be > > > herself when she has active arthritis. She has had some > swelling for > > > over a year--first many joints, then after med changes-only > ankles. > > > I know I should be ecstatic that she is happy and active now, > but I > > > can't help but wonder how long this will last. I am trying to > be > > > optimistic, and she is even enrolling in dance classes in a > couple of > > > weeks, but I have this nagging feeling of doom. I am sure you > all > > > understand. I don't care if she isn't an athlete or dancer or > > > whatever, but I do want her to be happy. > > > > > > Wishing everyone well! > > > Sophie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2006 Report Share Posted August 10, 2006 Hey guys - We had our long day of appointments. We started off with her opthamologist and the news was not good. Her eyes are the same if not a little bit worse from last time. NOT the news we were expecting. We talked about raising the Pred Forte and at this point we are not going to do it. She is at 6 drops a day each eye and he doesn't feel like it's all that effective so increasing the drops would not do much help. He does want to do steroid injections into her eyes however, but was going to talk to her rheumy to see what she though. We had a break for lunch and then off to the rheumy we went. Caroline didn't grow in the last 6 weeks (she's 42.5 inches), but she did gain almost 3 pounds and she is up to 44.2 pounds! Obviously the work of that prednisone! Dr. Akin checked over her joints and her knee's had some swelling, but her feet looked good. She said it might be the prednisone that is causing the bone pain, but we would keep an eye on it. Dr. Akin also agreed that the steroid injetions would be the best route for her versus going back on Remicade or Enbrel. We are going to stay on the Prednisone at 20mg/ daily for the next two weeks at least, maybe longer depending on how it goes. We are also adding Cellcept in hopes that it will knock out the fire that is brewing in her eyes! We then went off to the ped. dr. who looked at her ears. She still has a ton of swelling in her ear and the tube doesn't look like it's moving. It is definitely going to have to be surgically removed. Since both her opthamologist and her ENT are at the U of M, we are hoping to schedule to two surgeries together... We go back to all her doc's on September 1st so hopefully we'll see some much needed improvement. Thanks for all the prayers you have been sending - they are much appreciated!! Alia and Caroline, age 4, poly and uveitis Evan Guy, 13 months, " I do all my own stunts " > > > > > > > > Hi--I posted back in February about my daughter and our > > > > insurance struggles. I had posted many more times and recently > > > > realized my account was bouncing (what ever that means)! > > I > > > > reregistered and wanted to reconnect. I have been reading > > posts, so > > > > I feel like I know all of you, although I feel like a lurker, > > b/c I > > > > haven't been able to post! > > > > > > > > Anyway, my daughter has had systemic jra for three years now. > > She > > > > has had her ups and downs. She started Humira last February, > > and had > > > > her ankles injected last Tuesday. Right now she only has minor > > ankle > > > > pain, but her labs remain abnormal, so we know her arthritis is > > still > > > > around waiting to shake things up again. > > > > > > > > Since last Tuesday, after having her ankles injected, > > seems > > > > so happy. It kind of saddens me, b/c I realized that she can > > not be > > > > herself when she has active arthritis. She has had some > > swelling for > > > > over a year--first many joints, then after med changes-only > > ankles. > > > > I know I should be ecstatic that she is happy and active now, > > but I > > > > can't help but wonder how long this will last. I am trying to > > be > > > > optimistic, and she is even enrolling in dance classes in a > > couple of > > > > weeks, but I have this nagging feeling of doom. I am sure you > > all > > > > understand. I don't care if she isn't an athlete or dancer or > > > > whatever, but I do want her to be happy. > > > > > > > > Wishing everyone well! > > > > Sophie > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Gee Alia, I know you guys have to get a break soon. I will be praying it comes soon! Hang tight , Hang tough Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 I am so sorry to hear that the dr news was not good. I sure hope that things improve soon - I'll keep up my prayers. Michele ( 19, spondy) ________________________________ From: [mailto: ] On Behalf Of Alia Pranke Sent: Thursday, August 10, 2006 6:00 PM Subject: Re: Caroline/alia Hey guys - We had our long day of appointments. We started off with her opthamologist and the news was not good. Her eyes are the same if not a little bit worse from last time. NOT the news we were expecting. We talked about raising the Pred Forte and at this point we are not going to do it. She is at 6 drops a day each eye and he doesn't feel like it's all that effective so increasing the drops would not do much help. He does want to do steroid injections into her eyes however, but was going to talk to her rheumy to see what she though. We had a break for lunch and then off to the rheumy we went. Caroline didn't grow in the last 6 weeks (she's 42.5 inches), but she did gain almost 3 pounds and she is up to 44.2 pounds! Obviously the work of that prednisone! Dr. Akin checked over her joints and her knee's had some swelling, but her feet looked good. She said it might be the prednisone that is causing the bone pain, but we would keep an eye on it. Dr. Akin also agreed that the steroid injetions would be the best route for her versus going back on Remicade or Enbrel. We are going to stay on the Prednisone at 20mg/ daily for the next two weeks at least, maybe longer depending on how it goes. We are also adding Cellcept in hopes that it will knock out the fire that is brewing in her eyes! We then went off to the ped. dr. who looked at her ears. She still has a ton of swelling in her ear and the tube doesn't look like it's moving. It is definitely going to have to be surgically removed. Since both her opthamologist and her ENT are at the U of M, we are hoping to schedule to two surgeries together... We go back to all her doc's on September 1st so hopefully we'll see some much needed improvement. Thanks for all the prayers you have been sending - they are much appreciated!! Alia and Caroline, age 4, poly and uveitis Evan Guy, 13 months, " I do all my own stunts " > > > > > > > > Hi--I posted back in February about my daughter and our > > > > insurance struggles. I had posted many more times and recently > > > > realized my account was bouncing (what ever that means)! > > I > > > > reregistered and wanted to reconnect. I have been reading > > posts, so > > > > I feel like I know all of you, although I feel like a lurker, > > b/c I > > > > haven't been able to post! > > > > > > > > Anyway, my daughter has had systemic jra for three years now. > > She > > > > has had her ups and downs. She started Humira last February, > > and had > > > > her ankles injected last Tuesday. Right now she only has minor > > ankle > > > > pain, but her labs remain abnormal, so we know her arthritis is > > still > > > > around waiting to shake things up again. > > > > > > > > Since last Tuesday, after having her ankles injected, > > seems > > > > so happy. It kind of saddens me, b/c I realized that she can > > not be > > > > herself when she has active arthritis. She has had some > > swelling for > > > > over a year--first many joints, then after med changes-only > > ankles. > > > > I know I should be ecstatic that she is happy and active now, > > but I > > > > can't help but wonder how long this will last. I am trying to > > be > > > > optimistic, and she is even enrolling in dance classes in a > > couple of > > > > weeks, but I have this nagging feeling of doom. I am sure you > > all > > > > understand. I don't care if she isn't an athlete or dancer or > > > > whatever, but I do want her to be happy. > > > > > > > > Wishing everyone well! > > > > Sophie > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 Alia and Alan, When will this cycle end for you guys. You deserve a break! I will pray for you family. ________________________________ From: [mailto: ] On Behalf Of Tepper, Michele Sent: Friday, August 11, 2006 9:42 AM Subject: RE: Re: Caroline/alia I am so sorry to hear that the dr news was not good. I sure hope that things improve soon - I'll keep up my prayers. Michele ( 19, spondy) ________________________________ From: <mailto: %40> [mailto: <mailto: %40> ] On Behalf Of Alia Pranke Sent: Thursday, August 10, 2006 6:00 PM <mailto: %40> Subject: Re: Caroline/alia Hey guys - We had our long day of appointments. We started off with her opthamologist and the news was not good. Her eyes are the same if not a little bit worse from last time. NOT the news we were expecting. We talked about raising the Pred Forte and at this point we are not going to do it. She is at 6 drops a day each eye and he doesn't feel like it's all that effective so increasing the drops would not do much help. He does want to do steroid injections into her eyes however, but was going to talk to her rheumy to see what she though. We had a break for lunch and then off to the rheumy we went. Caroline didn't grow in the last 6 weeks (she's 42.5 inches), but she did gain almost 3 pounds and she is up to 44.2 pounds! Obviously the work of that prednisone! Dr. Akin checked over her joints and her knee's had some swelling, but her feet looked good. She said it might be the prednisone that is causing the bone pain, but we would keep an eye on it. Dr. Akin also agreed that the steroid injetions would be the best route for her versus going back on Remicade or Enbrel. We are going to stay on the Prednisone at 20mg/ daily for the next two weeks at least, maybe longer depending on how it goes. We are also adding Cellcept in hopes that it will knock out the fire that is brewing in her eyes! We then went off to the ped. dr. who looked at her ears. She still has a ton of swelling in her ear and the tube doesn't look like it's moving. It is definitely going to have to be surgically removed. Since both her opthamologist and her ENT are at the U of M, we are hoping to schedule to two surgeries together... We go back to all her doc's on September 1st so hopefully we'll see some much needed improvement. Thanks for all the prayers you have been sending - they are much appreciated!! Alia and Caroline, age 4, poly and uveitis Evan Guy, 13 months, " I do all my own stunts " > > > > > > > > Hi--I posted back in February about my daughter and our > > > > insurance struggles. I had posted many more times and recently > > > > realized my account was bouncing (what ever that means)! > > I > > > > reregistered and wanted to reconnect. I have been reading > > posts, so > > > > I feel like I know all of you, although I feel like a lurker, > > b/c I > > > > haven't been able to post! > > > > > > > > Anyway, my daughter has had systemic jra for three years now. > > She > > > > has had her ups and downs. She started Humira last February, > > and had > > > > her ankles injected last Tuesday. Right now she only has minor > > ankle > > > > pain, but her labs remain abnormal, so we know her arthritis is > > still > > > > around waiting to shake things up again. > > > > > > > > Since last Tuesday, after having her ankles injected, > > seems > > > > so happy. It kind of saddens me, b/c I realized that she can > > not be > > > > herself when she has active arthritis. She has had some > > swelling for > > > > over a year--first many joints, then after med changes-only > > ankles. > > > > I know I should be ecstatic that she is happy and active now, > > but I > > > > can't help but wonder how long this will last. I am trying to > > be > > > > optimistic, and she is even enrolling in dance classes in a > > couple of > > > > weeks, but I have this nagging feeling of doom. I am sure you > > all > > > > understand. I don't care if she isn't an athlete or dancer or > > > > whatever, but I do want her to be happy. > > > > > > > > Wishing everyone well! > > > > Sophie > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 I've been delayed in reading your update. I'm so sorry to hear that the news was not better. I absolutely hate that damn prednisone and the " sick face " that comes with it. (Let me clarify that I'm glad it helps to quiet her flares... but I hate the round face that comes with the package.) At least when Sophie is off of that stuff, I can get lost in her day to day activities and somewhat " forget " for the time being that she's sick. That just isn't the case when I look at her when she's on the oral steroids, gets that round face, and is eating me out of house and home. I look at those chubby cheeks and think, " She's sick. " The past two years of Xmas card photos have been taken while Soph was on steroids and had her " sick face. " My hope is that this year we can get a picture of Sophie... just plain Sophie (with Charlie, of course). I'm with you in that I would push to have the doctors cooperate with one another and save her from having to endure two separate procedures for the eyes and ears. She already endures tons more than any child should have to. You are a great mother. Caroline is very luck to have you fighting for her. I'm not sure where you find the strength... Oh, I sent a separate email (to your work address, I believe) letting you know my magnets/bracelets arrived in today's mail. They are WONDERFUL! Thank you, very much. I'm repeating myself but I'm not sure if you can get work emails on the weekends... You should now label the bracelets as bracelets/teethers. Charlie LOVES sinking her teeth into hers!!! Take care, Weber Professional Mom to: Sophie (5) - pauci/panuveitis - JRA super fighter Charlie (1) - " The Bird " www.caringbridge.org/visit/teamsophie On 8/11/06, ajaoky@... <ajaoky@...> wrote: > > Gee Alia, I know you guys have to get a break soon. I will be praying > it > comes soon! > > > Hang tight , Hang tough > Donna > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2006 Report Share Posted August 11, 2006 What an overwhelming day! You are really a strong person and great mom to Caroline! Things have to turn around for her. At least you left the appts. with a plan. That always makes me feel better when isn't doing well, when we leave with a plan of attack for this dreadful disease. Caroline is almost the same size as my --44 inches and 42 pounds. I was wondering about the prednisone causing bone pain. had her ankles injected a week and a half ago. She was running around and going up and down the stairs like crazy, but the last three days she has been limping again. Her ankles look a lot less swollen, but I am really starting to worry about the limp. I am praying it isn't permanent damage from them being swollen for over a year. I am going to research the connection between the injections and bone pain. I really don't remember her hurting after injections the other times she had them done. Take care and I really hope Caroline feels better soon! Sophie Mom to , age 6, systemic jra , age 9 Blake, 15 months Quote Link to comment Share on other sites More sharing options...
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