Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Just another newcomer.... I joined the list a couple weeks ago, but thought I'd come out of lurker mode. My son has been having problems with his bowels, failure to thrive, and most recently wheezing and coughing since he was about 5 days old. He is 10 weeks - today! The results are not yet in, but I am trying to be as knowledgeable and prepared as I can in order to move on and get my son well. At 5 weeks of age we spent 10 days in Children's Hospital of Pittsburgh. He had a Buccal Smear done and it turns out that test didn't have enough cells.... Last Friday we made the trip back to Pittsburgh *once again* to repeat the cheek swab and another sweat test (which didn't work). We've had 3 sweat tests done to date and none have produced enough sweat to measure. Hopefully this coming Friday we will have some answers and can move on from there. 's first couple days seemed so perfect. Then around day 5, I realized he had stopped pooping, Day 9 we took him in for a weight check. He was up 5 ounces from his discharge weight, so they sent us home and told us everything was fine. At his two week weight check/color check (he was also jaundiced), he was down 2 ounces, and still not having BM's regularly. My doctor started to suspect Hirschsprung's (mega-colon) disease. After a couple weeks going back and forth to the doctor's office, our local hospital and labs, our doctor decided to send us to the ER in Pittsburgh. They admitted him that night. We weren't even prepared. No clothes - no nothing. I had thought we were going for a simple test... We ended up spending 10 days there.... They did the biopsy for the mega-colon and it came back negative. This is when they told me the would test him for CF, just to rule it out. They had me pumping my milk and measuring all his input and they took care of the output part :-)) One good thing was the biopsy seemed to correct my little guy's constipation trouble... They sent a stool sample off to the lab which showed fat in his stool. They then had me adding fortifier to my milk and cereal (for his reflux). He is also on Zantac, which doesn't seem to be doing much good. After several days of a significant weight gain, they sent us home. We still have to add extra calories to his milk, and he still eats like a pig, but he seems to be doing so well. Another of his tests, Alpha-one anti-trypsin, came back with an elevated level of 6.8, whatever that means. I have read a little about it. And my family doctor didn't know anything about it, but a doctor in Pittsburgh did tell me normal was below 4. Not even a week after he was discharged, I started to notice a little wheezing. Sometimes I can feel it in his chest when I hold him. And also he has started coughing. More so at night. I mentioned this to my doctor and he suggested it was the time of year. I've kissed 's skin, licked his forehead, sucked on his toes, but have yet to taste a trace of salt. The other day we came home and Josh was still sleeping in his car seat. He seemed so peaceful we left him all bundled up in his blankets (here in Erie it's practically winter already!) When I took him out he seemed a little sweaty - I'm thinking this is a good sign as I knew his sweat test was scheduled a couple days later and I thought I knew just how to get him to sweat this time around - but I was wrong... Anyway, a little while later, I noticed something that looked like glitter on his forehead, but I licked him and still couldn't taste anything, even had my husband come over and taste the little bugger. That's my little man - the human popsicle . I know I'm probably leaving something out, but I guess I've gone on long enough. Thanks for listening to me ramble on - if you've made it this far. n mother of 4 Kaitlynn -11 Halie - 7 Kennidy - 5 and the little prince, - 10 weeks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Hi n, My name is Jen and I have 3 kids with cf. I was wondering why they don't just run a genetic's test on your baby? They ran one on Phynix when he was born, but since they all have an unidentified gene it didn't show and we waited till he was 4 months before doing the sweat test. I was told that they can't get an accurate diagnoses from the sweat test untill the baby is at least 4 months old. Sorry your having to deal with this, waiting is one of the hardest parts. Glad you found us. Oh, my son PJ doesn't taste salty at all. He's 6 months now and his sweat test came back at 101. Jen A. mom to ALex 4, Yolo 2,and Phynix 6 months all w/cf. > >Reply-To: cfparents >To: " cfparents cfparents > >Subject: newcomer - kinda long >Date: Wed, 30 Oct 2002 14:05:11 -0500 > >Just another newcomer.... > >I joined the list a couple weeks ago, but thought I'd come out of lurker >mode. > >My son has been having problems with his bowels, failure to thrive, and >most >recently wheezing and coughing since he was about 5 days old. He is 10 >weeks >- today! > >The results are not yet in, but I am trying to be as knowledgeable and >prepared as I can in order to move on and get my son well. > >At 5 weeks of age we spent 10 days in Children's Hospital of Pittsburgh. He >had a Buccal Smear done and it turns out that test didn't have enough >cells.... Last Friday we made the trip back to Pittsburgh *once again* to >repeat the cheek swab and another sweat test (which didn't work). We've had >3 sweat tests done to date and none have produced enough sweat to measure. >Hopefully this coming Friday we will have some answers and can move on from >there. > >'s first couple days seemed so perfect. Then around day 5, I realized >he had stopped pooping, Day 9 we took him in for a weight check. He was up >5 >ounces from his discharge weight, so they sent us home and told us >everything was fine. At his two week weight check/color check (he was also >jaundiced), he was down 2 ounces, and still not having BM's regularly. My >doctor started to suspect Hirschsprung's (mega-colon) disease. After a >couple weeks going back and forth to the doctor's office, our local >hospital >and labs, our doctor decided to send us to the ER in Pittsburgh. They >admitted him that night. We weren't even prepared. No clothes - no nothing. >I had thought we were going for a simple test... We ended up spending 10 >days there.... > >They did the biopsy for the mega-colon and it came back negative. This is >when they told me the would test him for CF, just to rule it out. > >They had me pumping my milk and measuring all his input and they took care >of the output part :-)) One good thing was the biopsy seemed to correct my >little guy's constipation trouble... They sent a stool sample off to the >lab >which showed fat in his stool. They then had me adding fortifier to my milk >and cereal (for his reflux). He is also on Zantac, which doesn't seem to be >doing much good. After several days of a significant weight gain, they sent >us home. We still have to add extra calories to his milk, and he still eats >like a pig, but he seems to be doing so well. > >Another of his tests, Alpha-one anti-trypsin, came back with an elevated >level of 6.8, whatever that means. I have read a little about it. And my >family doctor didn't know anything about it, but a doctor in Pittsburgh did >tell me normal was below 4. > >Not even a week after he was discharged, I started to notice a little >wheezing. Sometimes I can feel it in his chest when I hold him. And also he >has started coughing. More so at night. I mentioned this to my doctor and >he >suggested it was the time of year. > >I've kissed 's skin, licked his forehead, sucked on his toes, but >have >yet to taste a trace of salt. The other day we came home and Josh was still >sleeping in his car seat. He seemed so peaceful we left him all bundled up >in his blankets (here in Erie it's practically winter already!) When I took >him out he seemed a little sweaty - I'm thinking this is a good sign as I >knew his sweat test was scheduled a couple days later and I thought I knew >just how to get him to sweat this time around - but I was wrong... Anyway, >a >little while later, I noticed something that looked like glitter on his >forehead, but I licked him and still couldn't taste anything, even had my >husband come over and taste the little bugger. That's my little man - the >human popsicle . > >I know I'm probably leaving something out, but I guess I've gone on long >enough. Thanks for listening to me ramble on - if you've made it this far. > >n >mother of 4 >Kaitlynn -11 >Halie - 7 >Kennidy - 5 >and the little prince, - 10 weeks > > > > > > > _________________________________________________________________ Choose an Internet access plan right for you -- try MSN! http://resourcecenter.msn.com/access/plans/default.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2002 Report Share Posted October 30, 2002 Hi n, My name is Jen and I have 3 kids with cf. I was wondering why they don't just run a genetic's test on your baby? They ran one on Phynix when he was born, but since they all have an unidentified gene it didn't show and we waited till he was 4 months before doing the sweat test. I was told that they can't get an accurate diagnoses from the sweat test untill the baby is at least 4 months old. Sorry your having to deal with this, waiting is one of the hardest parts. Glad you found us. Oh, my son PJ doesn't taste salty at all. He's 6 months now and his sweat test came back at 101. Jen A. mom to ALex 4, Yolo 2,and Phynix 6 months all w/cf. > >Reply-To: cfparents >To: " cfparents cfparents > >Subject: newcomer - kinda long >Date: Wed, 30 Oct 2002 14:05:11 -0500 > >Just another newcomer.... > >I joined the list a couple weeks ago, but thought I'd come out of lurker >mode. > >My son has been having problems with his bowels, failure to thrive, and >most >recently wheezing and coughing since he was about 5 days old. He is 10 >weeks >- today! > >The results are not yet in, but I am trying to be as knowledgeable and >prepared as I can in order to move on and get my son well. > >At 5 weeks of age we spent 10 days in Children's Hospital of Pittsburgh. He >had a Buccal Smear done and it turns out that test didn't have enough >cells.... Last Friday we made the trip back to Pittsburgh *once again* to >repeat the cheek swab and another sweat test (which didn't work). We've had >3 sweat tests done to date and none have produced enough sweat to measure. >Hopefully this coming Friday we will have some answers and can move on from >there. > >'s first couple days seemed so perfect. Then around day 5, I realized >he had stopped pooping, Day 9 we took him in for a weight check. He was up >5 >ounces from his discharge weight, so they sent us home and told us >everything was fine. At his two week weight check/color check (he was also >jaundiced), he was down 2 ounces, and still not having BM's regularly. My >doctor started to suspect Hirschsprung's (mega-colon) disease. After a >couple weeks going back and forth to the doctor's office, our local >hospital >and labs, our doctor decided to send us to the ER in Pittsburgh. They >admitted him that night. We weren't even prepared. No clothes - no nothing. >I had thought we were going for a simple test... We ended up spending 10 >days there.... > >They did the biopsy for the mega-colon and it came back negative. This is >when they told me the would test him for CF, just to rule it out. > >They had me pumping my milk and measuring all his input and they took care >of the output part :-)) One good thing was the biopsy seemed to correct my >little guy's constipation trouble... They sent a stool sample off to the >lab >which showed fat in his stool. They then had me adding fortifier to my milk >and cereal (for his reflux). He is also on Zantac, which doesn't seem to be >doing much good. After several days of a significant weight gain, they sent >us home. We still have to add extra calories to his milk, and he still eats >like a pig, but he seems to be doing so well. > >Another of his tests, Alpha-one anti-trypsin, came back with an elevated >level of 6.8, whatever that means. I have read a little about it. And my >family doctor didn't know anything about it, but a doctor in Pittsburgh did >tell me normal was below 4. > >Not even a week after he was discharged, I started to notice a little >wheezing. Sometimes I can feel it in his chest when I hold him. And also he >has started coughing. More so at night. I mentioned this to my doctor and >he >suggested it was the time of year. > >I've kissed 's skin, licked his forehead, sucked on his toes, but >have >yet to taste a trace of salt. The other day we came home and Josh was still >sleeping in his car seat. He seemed so peaceful we left him all bundled up >in his blankets (here in Erie it's practically winter already!) When I took >him out he seemed a little sweaty - I'm thinking this is a good sign as I >knew his sweat test was scheduled a couple days later and I thought I knew >just how to get him to sweat this time around - but I was wrong... Anyway, >a >little while later, I noticed something that looked like glitter on his >forehead, but I licked him and still couldn't taste anything, even had my >husband come over and taste the little bugger. That's my little man - the >human popsicle . > >I know I'm probably leaving something out, but I guess I've gone on long >enough. Thanks for listening to me ramble on - if you've made it this far. > >n >mother of 4 >Kaitlynn -11 >Halie - 7 >Kennidy - 5 >and the little prince, - 10 weeks > > > > > > > _________________________________________________________________ Choose an Internet access plan right for you -- try MSN! http://resourcecenter.msn.com/access/plans/default.asp Quote Link to comment Share on other sites More sharing options...
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