Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Kelli, It sounds to me that your child has CF. I have two daughter with CF they are 9 and 4 now but they were 6 and 1 at the time they were diagnosed. I wish that they would start making it mandatory for them to test babies for CF and it would stop this guessing game for everyone. Please keep us informed as to your child's results. This is a very good group to vent with they have helped me out tremendously. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Our 3 year old son has horrible diarrhea since birth- green, bloody, liquidy, foul-smelling, mucousy stools. He has abdominal cramping. At 3 months, he had a nissan fundalplication and pyloromyotomy for GERD, and a blockage. He was misdiagnosed with eosinophilic colitis and now the doctor thinks there's a possibility he may have an odd presentation of cf. Doc said most kids with cf do present with respiratory issues, but occasionally the respiratory issues do have a later onset. Our son hasn't had much in the way of respiratory issues- a little hayfever, a sniffle and nothing else except croup only once so severe his pulsox dived to 88 and he was hospitalized. He does have fevers that shoot up to 104-105 for no apparent reason and then go away several times a month. (this has been since birth) Has anyone been dxed or has a child dxed with cf who had gi issues and then a later onset of respiratory issues? Sweat test is Thursday. Kelli- a mom needing some reassurance and answers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Hi Kelli, Our son wasn't daignosed until 3 1/2 because of stools. No respiratory he is now 10. That fever thing may have nothing to do with CF at all. Our middle son had fevers for about 2 years you could pinpoint on the calander that it was time, we out grew them but it was scary because it was always high. Our pediatrician had another patient that did the same thing and sent her through all kinds of testing and never found a thing so with us he said lets wait a little while so we did and they just went away. CF ?s Our 3 year old son has horrible diarrhea since birth- green, bloody, liquidy, foul-smelling, mucousy stools. He has abdominal cramping. At 3 months, he had a nissan fundalplication and pyloromyotomy for GERD, and a blockage. He was misdiagnosed with eosinophilic colitis and now the doctor thinks there's a possibility he may have an odd presentation of cf. Doc said most kids with cf do present with respiratory issues, but occasionally the respiratory issues do have a later onset. Our son hasn't had much in the way of respiratory issues- a little hayfever, a sniffle and nothing else except croup only once so severe his pulsox dived to 88 and he was hospitalized. He does have fevers that shoot up to 104-105 for no apparent reason and then go away several times a month. (this has been since birth) Has anyone been dxed or has a child dxed with cf who had gi issues and then a later onset of respiratory issues? Sweat test is Thursday. Kelli- a mom needing some reassurance and answers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Yes, my sister, who is 26 now never had any respiratory issues until her late teens. She was diagnosed at 1 year with bowel issues/failure to thrive. She is double delta F508 (the most common of the cf mutations). My son is 3 and a half and only has GI problems - knock wood!! He has one delta F508 and I507 mutations. I think a lot of people with cf only have GI trouble for some time, before any sign, if at all, of respiratory. Melinda CF ?s Our 3 year old son has horrible diarrhea since birth- green, bloody, liquidy, foul-smelling, mucousy stools. He has abdominal cramping. At 3 months, he had a nissan fundalplication and pyloromyotomy for GERD, and a blockage. He was misdiagnosed with eosinophilic colitis and now the doctor thinks there's a possibility he may have an odd presentation of cf. Doc said most kids with cf do present with respiratory issues, but occasionally the respiratory issues do have a later onset. Our son hasn't had much in the way of respiratory issues- a little hayfever, a sniffle and nothing else except croup only once so severe his pulsox dived to 88 and he was hospitalized. He does have fevers that shoot up to 104-105 for no apparent reason and then go away several times a month. (this has been since birth) Has anyone been dxed or has a child dxed with cf who had gi issues and then a later onset of respiratory issues? Sweat test is Thursday. Kelli- a mom needing some reassurance and answers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 is 19 months old and has not had any pulmonary symptoms yet to speak of, nothing more than a bad cold. Do you hear me knocking wood? Good luck with the sweat test. Sure hope it isn't CF, but at least if it is, you can get his stomach feeling better. We've had all the adjectives you listed except bloody. ;-) %^%^%^%^%^%^%^%^%^%^%^%^%^% mama to , 18 mo wCF and SZ Alpha, and , 3.5 yo SZ Alpha, no CF > -----Original Message----- > From: kellilynnette > Sent: Tuesday, March 26, 2002 5:09 PM > > Our 3 year old son has horrible diarrhea since birth- green, bloody, > liquidy, foul-smelling, mucousy stools. He has abdominal cramping. > At 3 months, he had a nissan fundalplication and pyloromyotomy for > GERD, and a blockage. He was misdiagnosed with eosinophilic colitis > and now the doctor thinks there's a possibility he may have an odd > presentation of cf. Doc said most kids with cf do present with > respiratory issues, but occasionally the respiratory issues do have a > later onset. Our son hasn't had much in the way of respiratory issues- > a little hayfever, a sniffle and nothing else except croup only once > so severe his pulsox dived to 88 and he was hospitalized. He does > have fevers that shoot up to 104-105 for no apparent reason and then > go away several times a month. (this has been since birth) Has anyone > been dxed or has a child dxed with cf who had gi issues and then a > later onset of respiratory issues? Sweat test is Thursday. > > Kelli- a mom needing some reassurance and answers > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 My baby is a year old tomorrow (9.5 months adjusted) and he doesn't have any lung issues--only GI symptoms. He takes enzymes and has a g-tube now because he didn't eat enough but that is it. We keep hoping the lung stuff never happens!! > is 19 months old and has not had any pulmonary symptoms yet to > speak of, nothing more than a bad cold. Do you hear me knocking wood? > > Good luck with the sweat test. Sure hope it isn't CF, but at least if it > is, you can get his stomach feeling better. We've had all the adjectives > you listed except bloody. ;-) > > %^%^%^%^%^%^%^%^%^%^%^%^%^% > > mama to , 18 mo wCF and SZ Alpha, and , 3.5 yo SZ Alpha, no CF > > > > -----Original Message----- > > From: kellilynnette [mailto:kellilynnette@y...] > > Sent: Tuesday, March 26, 2002 5:09 PM > > > > > Our 3 year old son has horrible diarrhea since birth- green, bloody, > > liquidy, foul-smelling, mucousy stools. He has abdominal cramping. > > At 3 months, he had a nissan fundalplication and pyloromyotomy for > > GERD, and a blockage. He was misdiagnosed with eosinophilic colitis > > and now the doctor thinks there's a possibility he may have an odd > > presentation of cf. Doc said most kids with cf do present with > > respiratory issues, but occasionally the respiratory issues do have a > > later onset. Our son hasn't had much in the way of respiratory issues- > > a little hayfever, a sniffle and nothing else except croup only once > > so severe his pulsox dived to 88 and he was hospitalized. He does > > have fevers that shoot up to 104-105 for no apparent reason and then > > go away several times a month. (this has been since birth) Has anyone > > been dxed or has a child dxed with cf who had gi issues and then a > > later onset of respiratory issues? Sweat test is Thursday. > > > > Kelli- a mom needing some reassurance and answers > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Kelli, Has your son been test for Celiac disease? My friend has two children with it. They had terrible stomach cramps and foul stools. Just thought I would mention it. Hope this helps. Cheryl CF ?s Our 3 year old son has horrible diarrhea since birth- green, bloody, liquidy, foul-smelling, mucousy stools. He has abdominal cramping. At 3 months, he had a nissan fundalplication and pyloromyotomy for GERD, and a blockage. He was misdiagnosed with eosinophilic colitis and now the doctor thinks there's a possibility he may have an odd presentation of cf. Doc said most kids with cf do present with respiratory issues, but occasionally the respiratory issues do have a later onset. Our son hasn't had much in the way of respiratory issues- a little hayfever, a sniffle and nothing else except croup only once so severe his pulsox dived to 88 and he was hospitalized. He does have fevers that shoot up to 104-105 for no apparent reason and then go away several times a month. (this has been since birth) Has anyone been dxed or has a child dxed with cf who had gi issues and then a later onset of respiratory issues? Sweat test is Thursday. Kelli- a mom needing some reassurance and answers Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Kelli, I don't know if this will give you reassurance or answers but my son was the same way - he has had no (knock wood) reparatory involvement (other than a bout with RSV before he was diagnosed with CF). He could not gain weight but due to the HUGE quantity of food I shoved down him (over 2500 calories per day) he was still on the 1% weight chart. He didn't have a sniffle, a cough, a wheeze, or even a sneeze for that matter. Sometimes finding out what is truly wrong with your child is a relief. CF is a difficult diagnosis but I did feel a form of relief - knowing it wasn't something I'd have to search for years to find out what it was. Once he started on enzymes he improved DRAMATICALLY and he was put on meds to stop his non-stop reflux. I wish you luck and strength for Thursday. Krishnan Mom to Santosh, 4.5 w/cf and Leela, 2.5 wocf CF ?s Our 3 year old son has horrible diarrhea since birth- green, bloody, liquidy, foul-smelling, mucousy stools. He has abdominal cramping. At 3 months, he had a nissan fundalplication and pyloromyotomy for GERD, and a blockage. He was misdiagnosed with eosinophilic colitis and now the doctor thinks there's a possibility he may have an odd presentation of cf. Doc said most kids with cf do present with respiratory issues, but occasionally the respiratory issues do have a later onset. Our son hasn't had much in the way of respiratory issues- a little hayfever, a sniffle and nothing else except croup only once so severe his pulsox dived to 88 and he was hospitalized. He does have fevers that shoot up to 104-105 for no apparent reason and then go away several times a month. (this has been since birth) Has anyone been dxed or has a child dxed with cf who had gi issues and then a later onset of respiratory issues? Sweat test is Thursday. Kelli- a mom needing some reassurance and answers PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
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