Our sons do seem to have a lot in common with the adhd, autism and failure to thrive. What brought you and the dr.'s to test for CF? Was it because of his growth? Does he have lung involvment? How did they find out that he was pancreatic insufficient? I have no idea what to expect at the next dr.'s appt. I wonder if they will want further genetic testing or if they are going to tell me another explaination for his FTT, like hormonal problems. Unless they tell me he has another diagnosis that is causing his FTT, I am going to push for the full genetic testing. My husband and I just feel like if he would start absobing food that he would improve and now it makes sense that his medications don't work well if his body is not absorbing them. He had lots of GI testing done a couple of years ago where I had to collect his poop and mix it-that was fun-and I remember blood and mucus in his stool and just figured that if there was something wrong they would tell me. He had no good bacteria and the bad bacteria was high so the Dr. said he likely had inflammation and that is when we started with probiotics and put him on a dairy free diet. He really did improve with the constipation after that, but he is just not growing. Since your son is Pancreatic insufficient, if you don't mind me asking, what did his stools look like? Are they oily and frothy? My son's are very light, almost orange, and very soft and HUGE! Sometimes they are like 18" long! I am sorry to be so graphic, but I know the poot talk is a big symptom with CF'ers and I want to know if his sound like CF. He does not have frothy poop and I haven't noticed any oily droplets in the toilet after he goes. I have a friend that is a pediatrician he she told me she doesn't think it is CF because his poop isn't frothy and oily. But her experience has only been with severe cases of CF kids that were in the hospital during her residency. Anyway, only 7 more days to wait until the next appt. I can't wait to find out what her impression is and because of this forum, I feel totally prepared for them to tell me they think he has CF and am ready for him to be treated. If it is not CF-I guess we will cross that bridge when we get to it. Looking forward to hearing from you-thanks for your post!
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Negative initial genetic testing
- Thread starter asiewny
- Start date
Our sons do seem to have a lot in common with the adhd, autism and failure to thrive. What brought you and the dr.'s to test for CF? Was it because of his growth? Does he have lung involvment? How did they find out that he was pancreatic insufficient? I have no idea what to expect at the next dr.'s appt. I wonder if they will want further genetic testing or if they are going to tell me another explaination for his FTT, like hormonal problems. Unless they tell me he has another diagnosis that is causing his FTT, I am going to push for the full genetic testing. My husband and I just feel like if he would start absobing food that he would improve and now it makes sense that his medications don't work well if his body is not absorbing them. He had lots of GI testing done a couple of years ago where I had to collect his poop and mix it-that was fun-and I remember blood and mucus in his stool and just figured that if there was something wrong they would tell me. He had no good bacteria and the bad bacteria was high so the Dr. said he likely had inflammation and that is when we started with probiotics and put him on a dairy free diet. He really did improve with the constipation after that, but he is just not growing. Since your son is Pancreatic insufficient, if you don't mind me asking, what did his stools look like? Are they oily and frothy? My son's are very light, almost orange, and very soft and HUGE! Sometimes they are like 18" long! I am sorry to be so graphic, but I know the poot talk is a big symptom with CF'ers and I want to know if his sound like CF. He does not have frothy poop and I haven't noticed any oily droplets in the toilet after he goes. I have a friend that is a pediatrician he she told me she doesn't think it is CF because his poop isn't frothy and oily. But her experience has only been with severe cases of CF kids that were in the hospital during her residency. Anyway, only 7 more days to wait until the next appt. I can't wait to find out what her impression is and because of this forum, I feel totally prepared for them to tell me they think he has CF and am ready for him to be treated. If it is not CF-I guess we will cross that bridge when we get to it. Looking forward to hearing from you-thanks for your post!
Our sons do seem to have a lot in common with the adhd, autism and failure to thrive. What brought you and the dr.'s to test for CF? Was it because of his growth? Does he have lung involvment? How did they find out that he was pancreatic insufficient? I have no idea what to expect at the next dr.'s appt. I wonder if they will want further genetic testing or if they are going to tell me another explaination for his FTT, like hormonal problems. Unless they tell me he has another diagnosis that is causing his FTT, I am going to push for the full genetic testing. My husband and I just feel like if he would start absobing food that he would improve and now it makes sense that his medications don't work well if his body is not absorbing them. He had lots of GI testing done a couple of years ago where I had to collect his poop and mix it-that was fun-and I remember blood and mucus in his stool and just figured that if there was something wrong they would tell me. He had no good bacteria and the bad bacteria was high so the Dr. said he likely had inflammation and that is when we started with probiotics and put him on a dairy free diet. He really did improve with the constipation after that, but he is just not growing. Since your son is Pancreatic insufficient, if you don't mind me asking, what did his stools look like? Are they oily and frothy? My son's are very light, almost orange, and very soft and HUGE! Sometimes they are like 18" long! I am sorry to be so graphic, but I know the poot talk is a big symptom with CF'ers and I want to know if his sound like CF. He does not have frothy poop and I haven't noticed any oily droplets in the toilet after he goes. I have a friend that is a pediatrician he she told me she doesn't think it is CF because his poop isn't frothy and oily. But her experience has only been with severe cases of CF kids that were in the hospital during her residency. Anyway, only 7 more days to wait until the next appt. I can't wait to find out what her impression is and because of this forum, I feel totally prepared for them to tell me they think he has CF and am ready for him to be treated. If it is not CF-I guess we will cross that bridge when we get to it. Looking forward to hearing from you-thanks for your post!
Our sons do seem to have a lot in common with the adhd, autism and failure to thrive. What brought you and the dr.'s to test for CF? Was it because of his growth? Does he have lung involvment? How did they find out that he was pancreatic insufficient? I have no idea what to expect at the next dr.'s appt. I wonder if they will want further genetic testing or if they are going to tell me another explaination for his FTT, like hormonal problems. Unless they tell me he has another diagnosis that is causing his FTT, I am going to push for the full genetic testing. My husband and I just feel like if he would start absobing food that he would improve and now it makes sense that his medications don't work well if his body is not absorbing them. He had lots of GI testing done a couple of years ago where I had to collect his poop and mix it-that was fun-and I remember blood and mucus in his stool and just figured that if there was something wrong they would tell me. He had no good bacteria and the bad bacteria was high so the Dr. said he likely had inflammation and that is when we started with probiotics and put him on a dairy free diet. He really did improve with the constipation after that, but he is just not growing. Since your son is Pancreatic insufficient, if you don't mind me asking, what did his stools look like? Are they oily and frothy? My son's are very light, almost orange, and very soft and HUGE! Sometimes they are like 18" long! I am sorry to be so graphic, but I know the poot talk is a big symptom with CF'ers and I want to know if his sound like CF. He does not have frothy poop and I haven't noticed any oily droplets in the toilet after he goes. I have a friend that is a pediatrician he she told me she doesn't think it is CF because his poop isn't frothy and oily. But her experience has only been with severe cases of CF kids that were in the hospital during her residency. Anyway, only 7 more days to wait until the next appt. I can't wait to find out what her impression is and because of this forum, I feel totally prepared for them to tell me they think he has CF and am ready for him to be treated. If it is not CF-I guess we will cross that bridge when we get to it. Looking forward to hearing from you-thanks for your post!
Our sons do seem to have a lot in common with the adhd, autism and failure to thrive. What brought you and the dr.'s to test for CF? Was it because of his growth? Does he have lung involvment? How did they find out that he was pancreatic insufficient? I have no idea what to expect at the next dr.'s appt. I wonder if they will want further genetic testing or if they are going to tell me another explaination for his FTT, like hormonal problems. Unless they tell me he has another diagnosis that is causing his FTT, I am going to push for the full genetic testing. My husband and I just feel like if he would start absobing food that he would improve and now it makes sense that his medications don't work well if his body is not absorbing them. He had lots of GI testing done a couple of years ago where I had to collect his poop and mix it-that was fun-and I remember blood and mucus in his stool and just figured that if there was something wrong they would tell me. He had no good bacteria and the bad bacteria was high so the Dr. said he likely had inflammation and that is when we started with probiotics and put him on a dairy free diet. He really did improve with the constipation after that, but he is just not growing. Since your son is Pancreatic insufficient, if you don't mind me asking, what did his stools look like? Are they oily and frothy? My son's are very light, almost orange, and very soft and HUGE! Sometimes they are like 18" long! I am sorry to be so graphic, but I know the poot talk is a big symptom with CF'ers and I want to know if his sound like CF. He does not have frothy poop and I haven't noticed any oily droplets in the toilet after he goes. I have a friend that is a pediatrician he she told me she doesn't think it is CF because his poop isn't frothy and oily. But her experience has only been with severe cases of CF kids that were in the hospital during her residency. Anyway, only 7 more days to wait until the next appt. I can't wait to find out what her impression is and because of this forum, I feel totally prepared for them to tell me they think he has CF and am ready for him to be treated. If it is not CF-I guess we will cross that bridge when we get to it. Looking forward to hearing from you-thanks for your post!
Wow, thanks for letting me know. I just don't want doc's to dismiss my son's symptoms and tell me they don't know what is going on. I wasn't really worried about him until he got an abnormal sweat test and read about what CF is. How old were you when you were diagnosed? What brought you to be tested for CF? Thanks for your reply.
Wow, thanks for letting me know. I just don't want doc's to dismiss my son's symptoms and tell me they don't know what is going on. I wasn't really worried about him until he got an abnormal sweat test and read about what CF is. How old were you when you were diagnosed? What brought you to be tested for CF? Thanks for your reply.
Wow, thanks for letting me know. I just don't want doc's to dismiss my son's symptoms and tell me they don't know what is going on. I wasn't really worried about him until he got an abnormal sweat test and read about what CF is. How old were you when you were diagnosed? What brought you to be tested for CF? Thanks for your reply.
Wow, thanks for letting me know. I just don't want doc's to dismiss my son's symptoms and tell me they don't know what is going on. I wasn't really worried about him until he got an abnormal sweat test and read about what CF is. How old were you when you were diagnosed? What brought you to be tested for CF? Thanks for your reply.
Wow, thanks for letting me know. I just don't want doc's to dismiss my son's symptoms and tell me they don't know what is going on. I wasn't really worried about him until he got an abnormal sweat test and read about what CF is. How old were you when you were diagnosed? What brought you to be tested for CF? Thanks for your reply.
Just wanted to let you all know that my DS had his follow up visit with the Endocrinologist today. All of his hormone-endocrine labs came back normal, she wants to begin growth hormone treatment (beginning in 3 months!)and has referred him to the CF center. She just explained that they are the "experts" and will be able to definitively say weather or not he has CF. She told me that she doesn't think he has CF, but I am glad she referred to the CF center because he will get the full panel genetic test. BTW, the first genetic test was negative.
So bottom line for me is-he still had a high borderline sweat test with no other explanation to cause it. He is FTT with a hefty appetite and has a history of GI problems. I am sure when we get to the CF center he will have to undergo more tests. So, we will have to wait another month to find out weather or not he has CF.
This waiting is torture because if there is something wrong, I want him to get treatment ASAP! The saga continues........
So bottom line for me is-he still had a high borderline sweat test with no other explanation to cause it. He is FTT with a hefty appetite and has a history of GI problems. I am sure when we get to the CF center he will have to undergo more tests. So, we will have to wait another month to find out weather or not he has CF.
This waiting is torture because if there is something wrong, I want him to get treatment ASAP! The saga continues........
Just wanted to let you all know that my DS had his follow up visit with the Endocrinologist today. All of his hormone-endocrine labs came back normal, she wants to begin growth hormone treatment (beginning in 3 months!)and has referred him to the CF center. She just explained that they are the "experts" and will be able to definitively say weather or not he has CF. She told me that she doesn't think he has CF, but I am glad she referred to the CF center because he will get the full panel genetic test. BTW, the first genetic test was negative.
So bottom line for me is-he still had a high borderline sweat test with no other explanation to cause it. He is FTT with a hefty appetite and has a history of GI problems. I am sure when we get to the CF center he will have to undergo more tests. So, we will have to wait another month to find out weather or not he has CF.
This waiting is torture because if there is something wrong, I want him to get treatment ASAP! The saga continues........
So bottom line for me is-he still had a high borderline sweat test with no other explanation to cause it. He is FTT with a hefty appetite and has a history of GI problems. I am sure when we get to the CF center he will have to undergo more tests. So, we will have to wait another month to find out weather or not he has CF.
This waiting is torture because if there is something wrong, I want him to get treatment ASAP! The saga continues........
Just wanted to let you all know that my DS had his follow up visit with the Endocrinologist today. All of his hormone-endocrine labs came back normal, she wants to begin growth hormone treatment (beginning in 3 months!)and has referred him to the CF center. She just explained that they are the "experts" and will be able to definitively say weather or not he has CF. She told me that she doesn't think he has CF, but I am glad she referred to the CF center because he will get the full panel genetic test. BTW, the first genetic test was negative.
So bottom line for me is-he still had a high borderline sweat test with no other explanation to cause it. He is FTT with a hefty appetite and has a history of GI problems. I am sure when we get to the CF center he will have to undergo more tests. So, we will have to wait another month to find out weather or not he has CF.
This waiting is torture because if there is something wrong, I want him to get treatment ASAP! The saga continues........
So bottom line for me is-he still had a high borderline sweat test with no other explanation to cause it. He is FTT with a hefty appetite and has a history of GI problems. I am sure when we get to the CF center he will have to undergo more tests. So, we will have to wait another month to find out weather or not he has CF.
This waiting is torture because if there is something wrong, I want him to get treatment ASAP! The saga continues........
Just wanted to let you all know that my DS had his follow up visit with the Endocrinologist today. All of his hormone-endocrine labs came back normal, she wants to begin growth hormone treatment (beginning in 3 months!)and has referred him to the CF center. She just explained that they are the "experts" and will be able to definitively say weather or not he has CF. She told me that she doesn't think he has CF, but I am glad she referred to the CF center because he will get the full panel genetic test. BTW, the first genetic test was negative.
So bottom line for me is-he still had a high borderline sweat test with no other explanation to cause it. He is FTT with a hefty appetite and has a history of GI problems. I am sure when we get to the CF center he will have to undergo more tests. So, we will have to wait another month to find out weather or not he has CF.
This waiting is torture because if there is something wrong, I want him to get treatment ASAP! The saga continues........
So bottom line for me is-he still had a high borderline sweat test with no other explanation to cause it. He is FTT with a hefty appetite and has a history of GI problems. I am sure when we get to the CF center he will have to undergo more tests. So, we will have to wait another month to find out weather or not he has CF.
This waiting is torture because if there is something wrong, I want him to get treatment ASAP! The saga continues........
Just wanted to let you all know that my DS had his follow up visit with the Endocrinologist today. All of his hormone-endocrine labs came back normal, she wants to begin growth hormone treatment (beginning in 3 months!)and has referred him to the CF center. She just explained that they are the "experts" and will be able to definitively say weather or not he has CF. She told me that she doesn't think he has CF, but I am glad she referred to the CF center because he will get the full panel genetic test. BTW, the first genetic test was negative.
<br />
<br />So bottom line for me is-he still had a high borderline sweat test with no other explanation to cause it. He is FTT with a hefty appetite and has a history of GI problems. I am sure when we get to the CF center he will have to undergo more tests. So, we will have to wait another month to find out weather or not he has CF.
<br />
<br />This waiting is torture because if there is something wrong, I want him to get treatment ASAP! The saga continues........
<br />
<br />So bottom line for me is-he still had a high borderline sweat test with no other explanation to cause it. He is FTT with a hefty appetite and has a history of GI problems. I am sure when we get to the CF center he will have to undergo more tests. So, we will have to wait another month to find out weather or not he has CF.
<br />
<br />This waiting is torture because if there is something wrong, I want him to get treatment ASAP! The saga continues........