constipation?

[momofcash]

With exception of the merconium illeus that my son had, his main issue has been constipation. I have tried different dietary plans (lacto free, gluten free, etc) he was checked for Hirschsprung's at birth. His digestive issues were what lead to the CF testing. Yesterday we were told they have identified the mutations that I understand are of very rare form. Its atypical. So little ionformation about his mutatuions. Then today the dietician at the CF care center said his constipation was unrelated to Cf and it was a separate issue that I need to pursue. Usually constipation with CF is relted to mediaction? I am just trying to be proactive. Its hard to believe that they are unrelated. His constipation isn't minor. He has been hospitalized twice for it. I don't even know how many enemas he has had. He has some sort of weird circulation issues where his little arms and legs turn purple and causes little bruising on his feet and hands. I was told that was also unrelated and he could grow out of it.

I am just trying to find someone with similarities. I am frustrated. The possibility that there is something else to test for, to wait for is overwhelming. I realize that there are parents who are struggling with greater issues. I pray for all of you. I just need answers for my son.

Please any advice. This is too much.

 

[momofcash]

With exception of the merconium illeus that my son had, his main issue has been constipation. I have tried different dietary plans (lacto free, gluten free, etc) he was checked for Hirschsprung's at birth. His digestive issues were what lead to the CF testing. Yesterday we were told they have identified the mutations that I understand are of very rare form. Its atypical. So little ionformation about his mutatuions. Then today the dietician at the CF care center said his constipation was unrelated to Cf and it was a separate issue that I need to pursue. Usually constipation with CF is relted to mediaction? I am just trying to be proactive. Its hard to believe that they are unrelated. His constipation isn't minor. He has been hospitalized twice for it. I don't even know how many enemas he has had. He has some sort of weird circulation issues where his little arms and legs turn purple and causes little bruising on his feet and hands. I was told that was also unrelated and he could grow out of it.

I am just trying to find someone with similarities. I am frustrated. The possibility that there is something else to test for, to wait for is overwhelming. I realize that there are parents who are struggling with greater issues. I pray for all of you. I just need answers for my son.

Please any advice. This is too much.

 

[momofcash]

With exception of the merconium illeus that my son had, his main issue has been constipation. I have tried different dietary plans (lacto free, gluten free, etc) he was checked for Hirschsprung's at birth. His digestive issues were what lead to the CF testing. Yesterday we were told they have identified the mutations that I understand are of very rare form. Its atypical. So little ionformation about his mutatuions. Then today the dietician at the CF care center said his constipation was unrelated to Cf and it was a separate issue that I need to pursue. Usually constipation with CF is relted to mediaction? I am just trying to be proactive. Its hard to believe that they are unrelated. His constipation isn't minor. He has been hospitalized twice for it. I don't even know how many enemas he has had. He has some sort of weird circulation issues where his little arms and legs turn purple and causes little bruising on his feet and hands. I was told that was also unrelated and he could grow out of it.

I am just trying to find someone with similarities. I am frustrated. The possibility that there is something else to test for, to wait for is overwhelming. I realize that there are parents who are struggling with greater issues. I pray for all of you. I just need answers for my son.

Please any advice. This is too much.

 

[Ratatosk]

We've dealt with constipation off and on with DS. Once we didn't even know he was constipated, but a tech noticed a LOT of stool backed up in his colon. He was still stooling. So his doctor suggested we use Milk of Magnesia short term to clean him out. He was 6 months old at the time. We had more issues when we switched him from formula to whole milk. His doctor did mention how CFers can get a meconium equivilant -- same sticky mucus that affects the lungs, pancrease... can also affect the intestines and cause problems with stool accumulating in the large intestine.

As far as it not being CF related. A friend of mine's granddaughter wcf had constipation issues from the very beginning and I believe she take miralax on a daily basis.

 

[Ratatosk]

We've dealt with constipation off and on with DS. Once we didn't even know he was constipated, but a tech noticed a LOT of stool backed up in his colon. He was still stooling. So his doctor suggested we use Milk of Magnesia short term to clean him out. He was 6 months old at the time. We had more issues when we switched him from formula to whole milk. His doctor did mention how CFers can get a meconium equivilant -- same sticky mucus that affects the lungs, pancrease... can also affect the intestines and cause problems with stool accumulating in the large intestine.

As far as it not being CF related. A friend of mine's granddaughter wcf had constipation issues from the very beginning and I believe she take miralax on a daily basis.

 

[Ratatosk]

We've dealt with constipation off and on with DS. Once we didn't even know he was constipated, but a tech noticed a LOT of stool backed up in his colon. He was still stooling. So his doctor suggested we use Milk of Magnesia short term to clean him out. He was 6 months old at the time. We had more issues when we switched him from formula to whole milk. His doctor did mention how CFers can get a meconium equivilant -- same sticky mucus that affects the lungs, pancrease... can also affect the intestines and cause problems with stool accumulating in the large intestine.

As far as it not being CF related. A friend of mine's granddaughter wcf had constipation issues from the very beginning and I believe she take miralax on a daily basis.

 

[Childressj]

my son also takes Miralax on a daily regular basis, he has been hopitalized for this too...He also told me to have a set time of day that he should sit on the toliet and not strain but just sit there to stimulate his natural responses (he was 6-8 yr old at the time) that helped some. Constipation can be very frighting and painful, I am sorry to hear your younster is going through this. Trevor is 13 and is still dealing with it. Jennifer

 

[Childressj]

my son also takes Miralax on a daily regular basis, he has been hopitalized for this too...He also told me to have a set time of day that he should sit on the toliet and not strain but just sit there to stimulate his natural responses (he was 6-8 yr old at the time) that helped some. Constipation can be very frighting and painful, I am sorry to hear your younster is going through this. Trevor is 13 and is still dealing with it. Jennifer

 

[Childressj]

my son also takes Miralax on a daily regular basis, he has been hopitalized for this too...He also told me to have a set time of day that he should sit on the toliet and not strain but just sit there to stimulate his natural responses (he was 6-8 yr old at the time) that helped some. Constipation can be very frighting and painful, I am sorry to hear your younster is going through this. Trevor is 13 and is still dealing with it. Jennifer

 

[okok]

this could be my imagination but i thought that CFers (after enzyme supplementation since lack of enzymes tends to cause diarhea) were prone to constipation becuase they are extremely good at removing water from stool in the intestines due to the CFTR mutation. I was even under the impression that carriers tend to have more issues with constipation for the same reason. (i remember not having a bm for 4 days as a child and thinking it was normal.) Please ask you dietician about this. I think she may be misinformed. (But i could be imagining this too.)

 

[okok]

this could be my imagination but i thought that CFers (after enzyme supplementation since lack of enzymes tends to cause diarhea) were prone to constipation becuase they are extremely good at removing water from stool in the intestines due to the CFTR mutation. I was even under the impression that carriers tend to have more issues with constipation for the same reason. (i remember not having a bm for 4 days as a child and thinking it was normal.) Please ask you dietician about this. I think she may be misinformed. (But i could be imagining this too.)

 

[okok]

this could be my imagination but i thought that CFers (after enzyme supplementation since lack of enzymes tends to cause diarhea) were prone to constipation becuase they are extremely good at removing water from stool in the intestines due to the CFTR mutation. I was even under the impression that carriers tend to have more issues with constipation for the same reason. (i remember not having a bm for 4 days as a child and thinking it was normal.) Please ask you dietician about this. I think she may be misinformed. (But i could be imagining this too.)

 

[JazzysMom]

Constipation is very much connected to CF just as diaghrea can be. There wouldnt be so many surgeries at birth from bowl problems if CF wasnt connected and this is BEFORE the babies are given meds so that theory is blown right out the window.

 

[JazzysMom]

Constipation is very much connected to CF just as diaghrea can be. There wouldnt be so many surgeries at birth from bowl problems if CF wasnt connected and this is BEFORE the babies are given meds so that theory is blown right out the window.

 

[JazzysMom]

Constipation is very much connected to CF just as diaghrea can be. There wouldnt be so many surgeries at birth from bowl problems if CF wasnt connected and this is BEFORE the babies are given meds so that theory is blown right out the window.

 

[momofcash]

That was my understanding, especially with atypical. I will continue conversations. Thank you.

 

[momofcash]

That was my understanding, especially with atypical. I will continue conversations. Thank you.

 

[momofcash]

That was my understanding, especially with atypical. I will continue conversations. Thank you.

 

[momofcash]

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.

 

[momofcash]

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.