Guest guest Posted December 24, 2004 Report Share Posted December 24, 2004 Hi, we are testing my daughter for all kinds of stomachs issues right now. She had stomach issues since she was born-- even before the JRA diagnosis. Our GI ( second one) said that stomach issues with JRA are the hardest to diagnose . They just don't know enough. She is being tested for Celiac disease, IBS, Croan's disease, parasites, etc. We have already done this twice before but now we are taking an aggressive approach and testing until something is found. So, I guess in a nutshell, yes, stomach issues are correlated with JRA. Many doctors like to attribute it to the meds- which are hard on the stomach, but there are many other issues as well. I would stay in tune with what is going on and make sure the doctors are paying attention to it. Hope all goes well, Kim ( Casey 6, pauci) distended belly - JRA Seasons Greetings! Thanks, for all of your replies to my last two posts. One more important one. Besides, JRA...while at the hospital for just 6 days, my son's belly got distended. At the time, they were more worried about the fevers. 10 days into it the belly continued to grow. All the x-rays just showed air. 7 weeks later still has a big belly. He does eat, pass gas, bowels. But, this is still a problem. Has anyone experienced this? Does it go w/ JRA or did the antibiotics do it? Wow, JRA is enough...the belly issue is still a huge concern. Thanks, Dad of Mitch 6 yo, 7 wks jra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2004 Report Share Posted December 26, 2004 , Do you mean belly or the actual stomach? The reason why I ask, with this last fever that Layla had, the only other symptom she had is that we started noticing her belly looked bigger. They did an ultrasound, which didn't show anything - they said everything was fine. But 10 days into the fever, once we were checked into the hospital, the doctors could feel that her spleen was enlarged. They did a CT Scan and that showed that her spleen was enlarged, not masses in the spleen, but it was enlarged. You could see from the outside that her belly just looked huge, her belly button was popping out. With Systemic JRA, organs of the body, like the liver and spleen, can get enflamed as well as the joints. But it could be caused by many other things - like a virus. The doctors also think she had a mild case of Macrophage Activation Syndrom going on - which is where the body starts to attack itself and eat its own red blood cells. They said this would also explain the enlarged spleen, since that is where this is happening. She became severely anemic and needed a blood transfusion. With the steroids, this symptom has improved as well and her spleen is back to normal size. I don't mean to scare you, just something to keep in mind and maybe ask the doctors about. Hope this was helpful! am mom to Layla, 17 months, possibly systemic JRA > > Seasons Greetings! Thanks, for all of your replies to my last two > posts. One more important one. Besides, JRA...while at the hospital > for just 6 days, my son's belly got distended. At the time, they > were more worried about the fevers. 10 days into it the belly > continued to grow. All the x-rays just showed air. 7 weeks later > still has a big belly. He does eat, pass gas, bowels. But, this is > still a problem. Has anyone experienced this? Does it go w/ JRA or > did the antibiotics do it? Wow, JRA is enough...the belly issue is > still a huge concern. > > Thanks, > > Dad of Mitch 6 yo, 7 wks jra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2004 Report Share Posted December 27, 2004 Hi , My son had a distended belly from the time he was 3 (at the beginning of symptoms) until he got off prednisone 4 months ago (he's now 8 1/2). My own opinion is that is was definitely the JRA. He was always skinny everywhere else, except this big old belly sticking out, kind of like the pictures you see with starvation and malnutrition. He always did have a swollen liver and spleen, and who knows what else was swollen inside him before the diagnosis?????? Once diagnosed and put on pred., his whole body changed with 15 pound weight gain and the whole Cushings effect. His body has gotten back to " normal " now and the distended belly is gone. He's back to his thin self and looks normally proportionate. I always asked every doctor we ever saw about the belly, and they would shrug their shoulders and say that maybe it was just his body type. Stacia and Hunter 8 systemic, iritis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 , I might of missed something.My monitor went ugly but Santa brought me a new,bigger flat screan. Before steroids I couldn't say what caused the distended belly other then possible organ inflimation or mayby even water retention. Steroids on the other hand are a major cause of big,hard distended bellies.It's called Cushing syndrome.The face becomes round,the belly gets big,you get an accumulation of fat at the base of the neck,hair grows everywhere,even if it's fine and downy and if on the steroids to long you gain weight everywere. It also depends on the dose of steroids for the duration.My kiddo was never able to get below 9mg for about 18 months.He weighs just a little less at 6 1/2 then he did on his 4th b-day.61.1 lbs now and 62.4 lbs then. was a HUGE rolly polly and looking at pictures you would never know it was him.s now tall and lean for his age. Anyways right now the pred is most likely to blame. Hugs Becki and 6systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2004 Report Share Posted December 28, 2004 Stacia, Wow, we are going through the same thing. The doctors don't seem to ever have a concern. We believed the atibiotics did him in. But, it's sounds like between JRA and steroids..voila..a swollen belly. Well, it's nice to know one day it will come down. > > Hi , > > My son had a distended belly from the time he was 3 (at the > beginning of symptoms) until he got off prednisone 4 months ago > (he's now 8 1/2). > > My own opinion is that is was definitely the JRA. He was always > skinny everywhere else, except this big old belly sticking out, kind > of like the pictures you see with starvation and malnutrition. He > always did have a swollen liver and spleen, and who knows what else > was swollen inside him before the diagnosis?????? > > Once diagnosed and put on pred., his whole body changed with 15 > pound weight gain and the whole Cushings effect. His body has > gotten back to " normal " now and the distended belly is gone. He's > back to his thin self and looks normally proportionate. > > I always asked every doctor we ever saw about the belly, and they > would shrug their shoulders and say that maybe it was just his body > type. > > Stacia and Hunter 8 systemic, iritis Quote Link to comment Share on other sites More sharing options...
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