Guest guest Posted July 1, 2000 Report Share Posted July 1, 2000 Georgina, I wanted to thank you for taking the time to respond me in Italian..... How did you do it/ do you or some one you know speaks italian? Joe egroups wrote: > > Georgina, > I really feel it was definately the steroids that made the difference. Paxton had a really bad flare at the end of April and had 5 doses of IV steroids-- 660mg. Solumedrol each dose and then was put on the p.o. prednisone. Nothing else we have tried in past year made much of a difference. This is the first time in 4 years that she has been without pain for such a long period. Before, the most we even hoped for was 1 to 2 days. I have decreased the pred. again to two x week (10 mg each dose) so far so good, except that she has stopped eating again. We also had to decrease the mtx. back to 5 mg. a week because her liver enzymes doubled over the past month. You win some and lose some I guess. I just pray the enbrel helps and that we don't have to increase the pred. > Oh yes, the house looks great. We painted the outside. Thank God for friends. Several of my ex coworkers spent every Sat. for three weeks helping me. Well, gotta run. I am the on call nurse this weekend and I only have one phone line. Take care and give Josh my best. > > Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2000 Report Share Posted July 12, 2000 Hi Tracey, Just wondering how Paxton is doing these days? How is she handling the decreased prednisone doses? This is the first time I've heard of it being giving only twice a week. That's terrific, if it works. And I hope it has been, since I know how frustrating trying to decrease the steroids can be. Sorry to hear about the elevated liver enzymes. With a reduction in her MTX, hopefully her labs will start looking better quickly. Let us know how the Enbrel works. Take care, Georgina PS ... I'm sure the house looks great It's so nice to have good friends that you can count on! > " tracey D. Nettles " wrote: > > Georgina, > I really feel it was definately the steroids that made the > difference. Paxton had a really bad flare at the end of April and had > 5 doses of IV steroids-- 660mg. Solumedrol each dose and then was put > on the p.o. prednisone. Nothing else we have tried in past year made > much of a difference. This is the first time in 4 years that she has > been without pain for such a long period. Before, the most we even > hoped for was 1 to 2 days. I have decreased the pred. again to two x > week (10 mg each dose) so far so good, except that she has stopped > eating again. We also had to decrease the mtx. back to 5 mg. a week > because her liver enzymes doubled over the past month. You win some > and lose some I guess. I just pray the enbrel helps and that we don't > have to increase the pred. > Oh yes, the house looks great. We painted the outside. Thank God for > friends. Several of my ex coworkers spent every Sat. for three weeks > helping me. Well, gotta run. I am the on call nurse this weekend and > I only have one phone line. Take care and give Josh my best. > > Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2000 Report Share Posted July 14, 2000 Just thought I would pipe in. My but I am learning about this frustration. Skyler is starting to experience the negative effects of Prelone now. His growth has halted and the flare continues to mount in severity. He has been on MTX for over 5 months and just as he has a few good days the Dr. wants to reduce his Prelone by 1/4 teaspoon (@ 5 mg per 5 ml). Even that small a reduction and he flares right away! So frustrating and scary. I hear so much about the dreadful side effects of Cortico steroids and see him not grow in nearly 6 months. With our luck and all the recent hospital activity We are really concerned now that the borderline of which is worse is getting very thin. Well, Dr. put him on Enbrel 4 weeks ago and sais we should see the effects any day now. Though the MTX took nearly 3 months to show any positive results at all. Sure do want to get him off some of the meds. He has GI troubles enough without all the meds. Poor lil guy is starting to feel like a pin cushion at a pharmacy. Now we just hold our breath and wait. Yesterday was a very good day. Sitter sais he was a changed boy! Played all day and was in a wonderful mood. So good to hear, then this morning he was so sore he could not walk. The ol' JRA Rollercoaster. Got a call from the Shriners group. They are wanting to get Skyhler into their system. This call was a Godsend. We have been so frustrated with all the red tape. EVERY state organization, insurance group, Dr.'s office puts us through so many hoops only to tell us we do not qualify for support. I looked up the Shriners on the web, called the office in Florida and gave them my info to mail me stuff. Then this local guy calls out of the blue! Sais they want to see him soon as possible. They will fly us out to L.A. at no cost (1 parent) & review all his records. They will cover Skyler till he is 18 at no cost ever to us, regardless of our income!!!! Mind you we are not paid well, just enough to not qualify, regardless of our bills and medical expenses. I should get back to work. I recommend other parents of JRA kids to look into Shriners. Though I have not experiencd their Dr.'s or programs, they have quite a good reputation and focus primarily on Orthopedic and Burn patients (Kids only). So nice to find a group like this when feeling so lost and out of hope. God bless all and keep the faith. Our Babies need us. Love PS Thanks for being here --- Georgina <gmckin@...> wrote: <HR> <html><body> <tt> Hi Tracey,<BR> <BR> Just wondering how Paxton is doing these days? How is she handling the<BR> decreased prednisone doses? This is the first time I've heard of it<BR> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2000 Report Share Posted July 14, 2000 , I know from experience how it is to be turned down for any help due to income. My husband has a great job and I stay at home with our girls, but his salary just gets us by... most of the time we live week to week. Kelsey has been going to physical therapy since April and our insurance is waiting on more info from the doctor before they will pay. I got the bills for April and May and the grand total so far (for just the therapy) is $2300, not counting June or July yet. If our insurance pays, it will only be 80%, leaving us with the other 20%. According to my calculations it could cost us around $300-$400 per month, which we can't afford, but according to everyone else my husband makes too much for us to qualify for any assistance. If the insurance decides not to cover it, I don't know what we will do. Not to mention the bills piling up at the pediatricians, rheumatologists, and opthalmologists. I will look into Shriners, I had never heard of them before, so thanks for sharing that. Best of luck to you and Skyler. I hope they will find the right treatments for him soon. I know its hard to see our little ones suffer and not be able to do anything for them. I feel fortunate that Kelsey has responded so well to Naprosyn alone along with PT. (She is only 3, and she has polyarticular jra) I know things could be much worse for us, and my heart goes out to those having such a difficult time. Again, thanks for sharing the info. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2000 Report Share Posted July 14, 2000 DEar , Do you look into Shriner's if there is one near you. It involves some paperwork, but I hear only wonderful things about them. It is not really based on need, for an acqaintance I know has a son going there who has ankylosing spondylitis. She sees the same ped. rheumy that we see, and it is all at no charge to her, and they have insurance that would pay. This friend of mine couldn't say enough good about Shriner's. I know the one here in Portland is supposed to be great with physical therapy. If n ever needs it, the ped. rheumy says that is where we need to go. Our ped. rheumy (the only one in our state) works at Shriners always free of charge. Good luck. >From: imshellrenee@... >Reply- egroups > egroups >Subject: Re: reply to Georgina >Date: Fri, 14 Jul 2000 16:19:39 EDT > >, >I know from experience how it is to be turned down for any help due to >income. My husband has a great job and I stay at home with our girls, but >his salary just gets us by... most of the time we live week to week. >Kelsey >has been going to physical therapy since April and our insurance is waiting >on more info from the doctor before they will pay. I got the bills for >April >and May and the grand total so far (for just the therapy) is $2300, not >counting June or July yet. If our insurance pays, it will only be 80%, >leaving us with the other 20%. According to my calculations it could cost >us >around $300-$400 per month, which we can't afford, but according to >everyone >else my husband makes too much for us to qualify for any assistance. If >the >insurance decides not to cover it, I don't know what we will do. Not to >mention the bills piling up at the pediatricians, rheumatologists, and >opthalmologists. I will look into Shriners, I had never heard of them >before, so thanks for sharing that. > >Best of luck to you and Skyler. I hope they will find the right treatments >for him soon. I know its hard to see our little ones suffer and not be >able >to do anything for them. I feel fortunate that Kelsey has responded so >well >to Naprosyn alone along with PT. (She is only 3, and she has polyarticular >jra) I know things could be much worse for us, and my heart goes out to >those >having such a difficult time. Again, thanks for sharing the info. > >Take care, > > >------------------------------------------------------------------------ >Get a NextCard Visa, in 30 seconds! >1. Fill in the brief application >2. Receive approval decision within 30 seconds >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >1/6628/3/_/524922/_/963605988/ >------------------------------------------------------------------------ > >For links to websites with JRA info visit: >http://www.geocities.com/Heartland/Village/8414/Links.html > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2000 Report Share Posted July 16, 2000 Hi I am so glad to hear that you may finally have some light at the end of your tunnel! I am familiar with the Shriners through a friend. Her granddaughter has a very rare disorder where her bones continue to break. I'm not sure of the exact name of this condition but Shriners flew her GD to Montreal, here in Canada. They are using very aggressive treatment and are getting really great results so far. It is a wonderful organization, that is devoted to children. I hope that you have results just as good. Take Care G >From: <chivalry@...> >Reply- egroups > egroups >Subject: Re: reply to Georgina >Date: Fri, 14 Jul 2000 08:20:43 -0700 (PDT) > >Just thought I would pipe in. >My but I am learning about this frustration. Skyler >is starting to experience the negative effects of >Prelone now. His growth has halted and the flare >continues to mount in severity. He has been on MTX >for over 5 months and just as he has a few good days >the Dr. wants to reduce his Prelone by 1/4 teaspoon (@ >5 mg per 5 ml). Even that small a reduction and he >flares right away! So frustrating and scary. I hear >so much about the dreadful side effects of Cortico >steroids and see him not grow in nearly 6 months. >With our luck and all the recent hospital activity We >are really concerned now that the borderline of which >is worse is getting very thin. > >Well, Dr. put him on Enbrel 4 weeks ago and sais we >should see the effects any day now. Though the MTX >took nearly 3 months to show any positive results at >all. Sure do want to get him off some of the meds. >He has GI troubles enough without all the meds. Poor >lil guy is starting to feel like a pin cushion at a >pharmacy. > >Now we just hold our breath and wait. Yesterday was a >very good day. Sitter sais he was a changed boy! >Played all day and was in a wonderful mood. So good >to hear, then this morning he was so sore he could not >walk. The ol' JRA Rollercoaster. > >Got a call from the Shriners group. They are wanting >to get Skyhler into their system. This call was a >Godsend. We have been so frustrated with all the red >tape. EVERY state organization, insurance group, >Dr.'s office puts us through so many hoops only to >tell us we do not qualify for support. I looked up the >Shriners on the web, called the office in Florida and >gave them my info to mail me stuff. Then this local >guy calls out of the blue! Sais they want to see him >soon as possible. They will fly us out to L.A. at no >cost (1 parent) & review all his records. They will >cover Skyler till he is 18 at no cost ever to us, >regardless of our income!!!! Mind you we are not paid >well, just enough to not qualify, regardless of our >bills and medical expenses. > >I should get back to work. I recommend other parents >of JRA kids to look into Shriners. Though I have not >experiencd their Dr.'s or programs, they have quite a >good reputation and focus primarily on Orthopedic and >Burn patients (Kids only). So nice to find a group >like this when feeling so lost and out of hope. > >God bless all and keep the faith. Our Babies need us. > >Love > > >PS Thanks for being here > >--- Georgina <gmckin@...> wrote: > ><HR> ><html><body> ><tt> >Hi Tracey,<BR> ><BR> >Just wondering how Paxton is doing these days? How is >she handling the<BR> >decreased prednisone doses? This is the first time >I've heard of it<BR> > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 Sigh....... Tough times here. Things are wearing on me. Skyler is seemingly not responding to Enbrel and his vomiting is returning. Life is so busy having to take so much extra time to massage him and care for him, I have to do my e-mail at work. Now I have been reprimanded for this, I have been trying to keep on top of the Arthritis stuff hoping for a clue or a prayer. These places have been my sanity and have helped so much. Getting depressed. Skylers fevers and flare are worsening and his pred-elevated moodiness is so taxing. It is getting hard to tell the difference between actual pain or him using it as a tool for attention. The slightest rejection and he goes into cry fits and I feel so badly. Finances are not making it and things are in default now. Got to borrow money just to buy Skylers prescriptions. So tired. Wish I could find a vacation somewhere. Hmmph, feels like I am writing a diary. Take care all, I will add you to our prayers tonight. [ & Skyler] Re: reply to Georgina ,I know from experience how it is to be turned down for any help due to income. My husband has a great job and I stay at home with our girls, but his salary just gets us by... most of the time we live week to week. Kelsey has been going to physical therapy .......... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2000 Report Share Posted July 23, 2000 , Where do you live? I wish we could do more to help you and your son, Skyler. Our thoughts and prayers go out to you tonight. Mark and Angel Beers -----Original Message----- From: V. [mailto:chivalry@...] Sent: Sunday, July 23, 2000 11:14 PM egroups Subject: Re: reply to Georgina Sigh....... Tough times here. Things are wearing on me. Skyler is seemingly not responding to Enbrel and his vomiting is returning. Life is so busy having to take so much extra time to massage him and care for him, I have to do my e-mail at work. Now I have been reprimanded for this, I have been trying to keep on top of the Arthritis stuff hoping for a clue or a prayer. These places have been my sanity and have helped so much. Getting depressed. Skylers fevers and flare are worsening and his pred-elevated moodiness is so taxing. It is getting hard to tell the difference between actual pain or him using it as a tool for attention. The slightest rejection and he goes into cry fits and I feel so badly. Finances are not making it and things are in default now. Got to borrow money just to buy Skylers prescriptions. So tired. Wish I could find a vacation somewhere. Hmmph, feels like I am writing a diary. Take care all, I will add you to our prayers tonight. [ & Skyler] ----- Original Message ----- From: imshellrenee@... egroups Sent: Friday, July 14, 2000 1:19 PM Subject: Re: reply to Georgina , I know from experience how it is to be turned down for any help due to income. My husband has a great job and I stay at home with our girls, but his salary just gets us by... most of the time we live week to week. Kelsey has been going to physical therapy .......... For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
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