constipation?

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momofcash

Guest
Jazzysmom-This is very difficult to sift through. Speaking to the geneticist today I said that is what I have found. I will keep talking to them.. Just the idea of there being a second issue outside of CF is toomuch.
 
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momofcash

Guest
Jazzysmom-This is very difficult to sift through. Speaking to the geneticist today I said that is what I have found. I will keep talking to them.. Just the idea of there being a second issue outside of CF is toomuch.
 
M

momofcash

Guest
Jazzysmom-This is very difficult to sift through. Speaking to the geneticist today I said that is what I have found. I will keep talking to them.. Just the idea of there being a second issue outside of CF is toomuch.
 
M

momofcash

Guest
Jazzysmom-This is very difficult to sift through. Speaking to the geneticist today I said that is what I have found. I will keep talking to them.. Just the idea of there being a second issue outside of CF is toomuch.
 
D

dyza

New member
There is no greater issue that concerns your own children.

I'm trying to get my head around what your dietician said, we recently went to a genetic councelor. I asked her about symptoms that a carrier would have, e:g asthma....she assured me that carriers who show signs of asthma show signs because they have a gene that causes asthma, and that it has nothing to do with the CF gene they carry. The same for hayfever type symptoms and so I would suppose the same for bowel problems, that they are caused by genes specific to a symptom, not to CF solely.
Craig
 
D

dyza

New member
There is no greater issue that concerns your own children.

I'm trying to get my head around what your dietician said, we recently went to a genetic councelor. I asked her about symptoms that a carrier would have, e:g asthma....she assured me that carriers who show signs of asthma show signs because they have a gene that causes asthma, and that it has nothing to do with the CF gene they carry. The same for hayfever type symptoms and so I would suppose the same for bowel problems, that they are caused by genes specific to a symptom, not to CF solely.
Craig
 
D

dyza

New member
There is no greater issue that concerns your own children.

I'm trying to get my head around what your dietician said, we recently went to a genetic councelor. I asked her about symptoms that a carrier would have, e:g asthma....she assured me that carriers who show signs of asthma show signs because they have a gene that causes asthma, and that it has nothing to do with the CF gene they carry. The same for hayfever type symptoms and so I would suppose the same for bowel problems, that they are caused by genes specific to a symptom, not to CF solely.
Craig
 
M

momofcash

Guest
We saw the gastroenterologist we were referred to and he said his constipation was directly related to CF. He said he has had several patients who have atypical CF that have the same problems. He explained that the same thick mucus that caused his merconium illeus causes his blockages. This is very frustrating. The letter from the geneticist (from the same hospital) clearly states that it is not a symptom of CF. Our pediatrician says to go with the GI. So confusing. First we were told he probably won't develop lung or pancreas issues until his thirties, now it may be his teens. I am having such a difficult time determining how much to worry. This all just sucks.
 
M

momofcash

Guest
We saw the gastroenterologist we were referred to and he said his constipation was directly related to CF. He said he has had several patients who have atypical CF that have the same problems. He explained that the same thick mucus that caused his merconium illeus causes his blockages. This is very frustrating. The letter from the geneticist (from the same hospital) clearly states that it is not a symptom of CF. Our pediatrician says to go with the GI. So confusing. First we were told he probably won't develop lung or pancreas issues until his thirties, now it may be his teens. I am having such a difficult time determining how much to worry. This all just sucks.
 
M

momofcash

Guest
We saw the gastroenterologist we were referred to and he said his constipation was directly related to CF. He said he has had several patients who have atypical CF that have the same problems. He explained that the same thick mucus that caused his merconium illeus causes his blockages. This is very frustrating. The letter from the geneticist (from the same hospital) clearly states that it is not a symptom of CF. Our pediatrician says to go with the GI. So confusing. First we were told he probably won't develop lung or pancreas issues until his thirties, now it may be his teens. I am having such a difficult time determining how much to worry. This all just sucks.
 
S

sdelorenzo

Guest
The GI doctor is the expert on this topic of constipation and cf. Geneticists are not experts on cf, they are only experts on how people inherit genes and how to interpret genetic tests. Yes, constipation is directly related to cf. My nephew has dealt with constipation problems since he was an infant but was not born with MI. My son was born with MI, but has not had any constipation problems. They carry the most common cf genes - delta 508.

CF varies from person to person. Genes provide a guideline of what the symptoms of cf might be, but they really can't predict how an individual cf person's disease will progress. While this is hard try not to worry too much, only time will tell how cf progresses for him. Just enjoy your son!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf, aunt to Joseph, 9 with cf
 
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sdelorenzo

Guest
The GI doctor is the expert on this topic of constipation and cf. Geneticists are not experts on cf, they are only experts on how people inherit genes and how to interpret genetic tests. Yes, constipation is directly related to cf. My nephew has dealt with constipation problems since he was an infant but was not born with MI. My son was born with MI, but has not had any constipation problems. They carry the most common cf genes - delta 508.

CF varies from person to person. Genes provide a guideline of what the symptoms of cf might be, but they really can't predict how an individual cf person's disease will progress. While this is hard try not to worry too much, only time will tell how cf progresses for him. Just enjoy your son!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf, aunt to Joseph, 9 with cf
 
S

sdelorenzo

Guest
The GI doctor is the expert on this topic of constipation and cf. Geneticists are not experts on cf, they are only experts on how people inherit genes and how to interpret genetic tests. Yes, constipation is directly related to cf. My nephew has dealt with constipation problems since he was an infant but was not born with MI. My son was born with MI, but has not had any constipation problems. They carry the most common cf genes - delta 508.

CF varies from person to person. Genes provide a guideline of what the symptoms of cf might be, but they really can't predict how an individual cf person's disease will progress. While this is hard try not to worry too much, only time will tell how cf progresses for him. Just enjoy your son!
Sharon, mom of Sophia, 5 and Jack, 3 both with cf, aunt to Joseph, 9 with cf
 
C

cysticfibrosisgirl

New member
What???
People with CF have lots of issues with not going poop.. why would the center tell you that? I take about 4 different meds a day to get my poop going!?

wow....


Anika 19/w CF DF508's
 
C

cysticfibrosisgirl

New member
What???
People with CF have lots of issues with not going poop.. why would the center tell you that? I take about 4 different meds a day to get my poop going!?

wow....


Anika 19/w CF DF508's
 
C

cysticfibrosisgirl

New member
What???
People with CF have lots of issues with not going poop.. why would the center tell you that? I take about 4 different meds a day to get my poop going!?

wow....


Anika 19/w CF DF508's
 
C

CFMOM65

New member
my little one has cf and has battled constipation since she was 5 mnths old shes now 17 mnths old and still has it very frustrating i know shes been hospitalized for it to and had a meconium illeus eqivalent. she takes miralax it works but even with that she still gets constipated !! i feel your frustration good luck

cfmom

daughter 9 yrs old w/o cf and baby girl 17 mnths w/ cf
 
C

CFMOM65

New member
my little one has cf and has battled constipation since she was 5 mnths old shes now 17 mnths old and still has it very frustrating i know shes been hospitalized for it to and had a meconium illeus eqivalent. she takes miralax it works but even with that she still gets constipated !! i feel your frustration good luck

cfmom

daughter 9 yrs old w/o cf and baby girl 17 mnths w/ cf
 
C

CFMOM65

New member
my little one has cf and has battled constipation since she was 5 mnths old shes now 17 mnths old and still has it very frustrating i know shes been hospitalized for it to and had a meconium illeus eqivalent. she takes miralax it works but even with that she still gets constipated !! i feel your frustration good luck

cfmom

daughter 9 yrs old w/o cf and baby girl 17 mnths w/ cf
 
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