Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 Hi Jana, If Robbie seems to be doing good right now, I wouldn't be too concerned about such a low dose of prednisone. I think that when they're taking a low dose, it doesn't interfere too much with their normal growth. Maybe you could one day ask the doctors about alternate day therapy though, to see if they think Robbie could handle that. That supposedly minimizes any side effects of prednisone, but it may be hard to make the transition if he still has some active arthritis. I think I remember them saying that they were testing Josh, in the very beginning, for Giardia. They had asked if he recently swam or waded or any fresh water sources and he had, but I believe it came back negative. Still, we try to avoid swimming at the river at Iao Valley because I've heard of several people contracting giardia from there. Plus, the water coming down from the mountains is way too cold and it bothers 's joints afterwards. What are some of the symptoms of having giardia? How come it took so long for them to realize that Robbie had it? Wow, I can't believe three days on Vioxx had such a terrible affect! That must have been awful. The same sort of thing happened to when he needed to come off his NSAID. I never knew how much the indomethacin was helping out, until he stopped taking it. We replaced it with Relafen and still didn't have much help. Eventually, he went back on indomethacin and there haven't been any more problems. Take Care, Georgina JanaB41@... wrote: > > From: JanaB41@... > > Janet, > > Sorry for the slow response, I have been out of town. Robbie's weight has > been > on my mind for the entire time he has been sick. This is because he had > Giardia (parasite) prior to the onset of JRA. He had Giardia for ~ 8 months > and 10 doctor visits without diagnosing it. He weighed 70 lbs at the end of > 2nd grade (big boy), dropped to around 50 lbs with the Giardia in 3rd, and > is 74 lbs in 7th. We are all tall in my family, and most of us are thin... > I'm not > sure I qualify anymore.... my 16 year old daughter is 5'9, she was 4 " taller > and > 20 lbs heavier at Robbie's current age. I am not sure any of this proves > anything. > > Since Robbie is doing fine on 5mg of Prednisone a day, should we change him > because it may be slowing his growth? I need to keep in mind how fortunate he > is to be doing as well as he is! > > Thanks, Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 Hi, Yes, this is what we've been told as well. That you have have to carefully consider and try to balance the side effects of the medications versus the effects of the illness itself. Untreated or under treated JRA can be very dangerous and aside from joint replacement surgeries, there's not much you can do for a joint after it's already been severely damaged. ~Georgina > I find this interesting..... Robbie's doctor tells me every time I ask " the > active JRA will > hurt him and stunt his growth much more then the Prednisone. " > > Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Hi! It's funny because I''m not even thinking about the Prednisone right now because he is doing so poorly. It's amazing how quick your focus can change. I will be back to this issue again, I'm sure, when he is doing better again. As far as the Giardia, they tested him for every kind of cancer and everything else but parasites. I wasn't educated enough to know they were missing it. The symptoms are stomach problems and weight loss. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 Hi Jana, Truer words cannot be spoken! Things that seem so very important can suddenly take the burner, depending on how your child's health is at the moment. For a while, I was very concerned about Josh's slowed growth. Then came another flare, and that was the least of my worries! Thanks for letting me know more about the symptoms of giardia. I guess that was something for them to consider, since Josh suddenly lost lots of weight and had no appetite at all, upon becoming sick. I wouldn't have thought of it, myself. We did ask about cat scratch fever and even an illness that can be picked up through a germ in the virus of rodent excrement. Josh's dad was ready to blame the family pets! Anything at all, to figure out what happened. Take care, Georgina JanaB41@... wrote: > Hi! It's funny because I''m not even thinking about the Prednisone right now > because he is doing so poorly. It's amazing how quick your focus can change. > I will be back to this issue again, I'm sure, when he is doing better again. > > As far as the Giardia, they tested him for every kind of cancer and everything > else but parasites. I wasn't educated enough to know they were missing it. > The > symptoms are stomach problems and weight loss. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 My daughter got it from a reaction to a DPT shot !!!! >From: JanaB41@... >Reply- onelist > onelist >Subjemest: Re: [ ] Robbie >Date: Tue, 2 Nov 1999 19:59:44 EST >MIME-Version: 1.0 >From errors-80038-1851-shancna Tue Nov 02 16:59:38 1999 >Received: from [209.207.164.225] by hotmail.com (3.2) with ESMTP id >MHotMailB9E8D3F90033D82197B3D1CFA4E1513F0; Tue Nov 02 16:59:38 1999 >Received: (qmail 18388 invoked by alias); 3 Nov 1999 01:20:17 -0000 >Received: (qmail 18374 invoked from network); 3 Nov 1999 01:20:16 -0000 >Received: from unknown (209.207.164.241) by pop1.onelist.com with QMQP; 3 >Nov 1999 01:20:16 -0000 >Received: from unknown (HELO imo12.mx.aol.com) (198.81.17.2) by >mta2.onelist.com with SMTP; 3 Nov 1999 01:05:29 -0000 >Received: from JanaB41@... by imo12.mx.aol.com (mail_out_v23.6.) id >hNAGa09316 (4315) for < onelist>; Tue, 2 Nov 1999 19:59:45 >-0500 (EST) >Message-ID: <0.57b4940c.2550e300@...> >X-Mailer: AOL 4.0 for Windows 95 sub 27 >Mailing-List: list onelist; contact -owneronelist >Delivered-mailing list onelist >Precedence: bulk >List-Unsubscribe: <mailto: -unsubscribeONElist> > >From: JanaB41@... > >Georgina, > >I remember when Robbie first got sick, I thought it was so important to >know >if the Giardia caused the onset of the JRA. Looking back now, I'm not so >sure it was important. I was only able to find one case study linking >Giardia >to JRA, and it was written in Spanish. I think we look for something to >blame! Jana > >>Visit my homepage for a list of sites with info on childhood arthritis: >http://www.geocities.com/Heartland/Village/8414/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 Georgina, I remember when Robbie first got sick, I thought it was so important to know if the Giardia caused the onset of the JRA. Looking back now, I'm not so sure it was important. I was only able to find one case study linking Giardia to JRA, and it was written in Spanish. I think we look for something to blame! Jana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 Val, yeah with these drugs sometimes you can't always be certain whats causing the belly ach. Glad to hear the play sessions are working ot for Rob. Will say an extra prayer the lil guy, for a sppedy get well and for all the the young ones too! take care and remember to wear green, for the up comin day!!!! because if you's don't, remember the lepracons will sure to give you a quick pinch! aye Jonny! Rusty Limbs on the loose! On Tue, 05 Mar 2002 17:03:47 EST carneyval@... writes: Hi all - it has been a hectic week or so - but I just wanted to let you know that the play therapy seems to be helping Rob quite a lot already - he has had no violent acting out episodes for a week now and very few tantrums. He did have a vomitting episode last Friday with fever, and aches (JRA or flu?) He has complained of "tummy ache" a lot in the last few days and his appetite has dwindled to nothing. Could it be the medication on his stomach or something unrelated. It is so hard to tell. Guess it is time to call the Doc.Take Care!ValRob's Mom (4,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2002 Report Share Posted March 10, 2002 Hello Val and ((((Rob))) I hope the tummy ache has gone since I am late in reading these posts..Tabitha has had upset stomach before..the rheumy prescribed Zantac for when this happens..She has had any in awhile. She has been hit with the 24hr. virus a good bit this winter but we have lots of people in this house so it just keeps going around. I am glad play therapy has helped Robs tantrums! Good luck karen(tab16.5..poly) From: carneyval@... Reply- < > Subject: Robbie Date: Tue, 05 Mar 2002 17:03:47 EST Hi all - it has been a hectic week or so - but I just wanted to let you know that the play therapy seems to be helping Rob quite a lot already - he has had no violent acting out episodes for a week now and very few tantrums. He did have a vomitting episode last Friday with fever, and aches (JRA or flu?) He has complained of " tummy ache " a lot in the last few days and his appetite has dwindled to nothing. Could it be the medication on his stomach or something unrelated. It is so hard to tell. Guess it is time to call the Doc. Take Care! Val Rob's Mom (4,systemic) _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
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