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Update and a question...
- Thread starter lvisser
- Start date
tabbycat821
New member
we are in MI as well so I am curious as to what CF Clinic you have been to?
tabbycat821
New member
we are in MI as well so I am curious as to what CF Clinic you have been to?
tabbycat821
New member
Thats where our son was diagnosed but now we go to the clinic at C.S. Motts Childrens Hospital at U ofM. I was not overly impressed with Devos at the few appts we had but to each their own I suppose, that was also 3 years ago. I verry much miss our clinic in Ohio at Cincinnati Children's Hospital, it was great. Good luck with everything.
tabbycat821
New member
Thats where our son was diagnosed but now we go to the clinic at C.S. Motts Childrens Hospital at U ofM. I was not overly impressed with Devos at the few appts we had but to each their own I suppose, that was also 3 years ago. I verry much miss our clinic in Ohio at Cincinnati Children's Hospital, it was great. Good luck with everything.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sanfloraine</b></i> We have the same problem: a baby with a negative sweat test and pancreatic problems. My 21 months old son has had terrible diarrhea since July, it started after I stopped breastfeeding. His first 16 months, he barely smiled, we always suspected he was in pain though we did not know what could be wrong. We now know he has pancreatic problems, his fecal elastase test was 148 = moderately PI, he his now taking enzymes. He also had a genetic test with 32 mutations that was negative. We saw a CF doctor that said: can't be CF! I am relieved but not completely convinced, he is also always congested (she said: it's cat allergies)... which is why we did the full genetic sequencing and are waiting for the results. Our insurance should cover most of it.</end quote>
I am always terrified how incompetent doctors can be. I mean how can you rule outCF based on 32 mutations when there are over 1500? Especially given the symptoms. Glad you got the full sequencing and hope it is not CF!
I am always terrified how incompetent doctors can be. I mean how can you rule outCF based on 32 mutations when there are over 1500? Especially given the symptoms. Glad you got the full sequencing and hope it is not CF!
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>sanfloraine</b></i> We have the same problem: a baby with a negative sweat test and pancreatic problems. My 21 months old son has had terrible diarrhea since July, it started after I stopped breastfeeding. His first 16 months, he barely smiled, we always suspected he was in pain though we did not know what could be wrong. We now know he has pancreatic problems, his fecal elastase test was 148 = moderately PI, he his now taking enzymes. He also had a genetic test with 32 mutations that was negative. We saw a CF doctor that said: can't be CF! I am relieved but not completely convinced, he is also always congested (she said: it's cat allergies)... which is why we did the full genetic sequencing and are waiting for the results. Our insurance should cover most of it.</end quote>
I am always terrified how incompetent doctors can be. I mean how can you rule outCF based on 32 mutations when there are over 1500? Especially given the symptoms. Glad you got the full sequencing and hope it is not CF!
I am always terrified how incompetent doctors can be. I mean how can you rule outCF based on 32 mutations when there are over 1500? Especially given the symptoms. Glad you got the full sequencing and hope it is not CF!
S
sanfloraine
Guest
Yes Ymikhale, we really want to know what the gene sequencing results will be!
We are in limbo right now: my son's regular gastroenterologist does not want to see him because he thinks it could still be CF and the CF specialist does not want to see him because he does not think it's CF!!
I have a quick question: the CF specialist said that his fecal elactase number was not severe enough to be CF ... can these numbers go down gradually for CF patients or do they immediately drop to almost 0 once the patient has PI? His was 157 in January, 148 in February.
We are in limbo right now: my son's regular gastroenterologist does not want to see him because he thinks it could still be CF and the CF specialist does not want to see him because he does not think it's CF!!
I have a quick question: the CF specialist said that his fecal elactase number was not severe enough to be CF ... can these numbers go down gradually for CF patients or do they immediately drop to almost 0 once the patient has PI? His was 157 in January, 148 in February.
S
sanfloraine
Guest
Yes Ymikhale, we really want to know what the gene sequencing results will be!
We are in limbo right now: my son's regular gastroenterologist does not want to see him because he thinks it could still be CF and the CF specialist does not want to see him because he does not think it's CF!!
I have a quick question: the CF specialist said that his fecal elactase number was not severe enough to be CF ... can these numbers go down gradually for CF patients or do they immediately drop to almost 0 once the patient has PI? His was 157 in January, 148 in February.
We are in limbo right now: my son's regular gastroenterologist does not want to see him because he thinks it could still be CF and the CF specialist does not want to see him because he does not think it's CF!!
I have a quick question: the CF specialist said that his fecal elactase number was not severe enough to be CF ... can these numbers go down gradually for CF patients or do they immediately drop to almost 0 once the patient has PI? His was 157 in January, 148 in February.