LIVER PROBLEMS AND CF

CFMOM65 · Mar 26, 2008

hi everyone it's been awhile since i've posted but i'm very concerned because my 2 yr old daughter w / cf has been having very high liver enzymes. shes had problems w / elevated liver enzymes since she was 2 months old and has taken actigall wich in the past when her enzymes go up they increase the actigall and it brings her enzymes back into the normal range. in the past few months her liver enzymes have gone up the dr increased her actigall from 90 mgs to 100 mgs hoping that would do the trick but it didn't they got higher , so then they ordered a liver sono wich showed that she has a fatty liver and her gallbladder is extemly small and contracted and dilated. the drs didn't seem to concerned or explain anything very well they just said we will redo her bloodwork in a few weeks, so they did and i just got the results back and her alt is 224 and her alt is 164 wich means its gotten alot higher than the last test. now they increased the dosage of her actigall to 150 mgs and in a couple of weeks they want to do a battery of blood tests a cmv , cpk , ebv , hepatitis panel and hepatitis c antibody - KIBA , serum copper , ceruloplasmin , antitrypin phenotype and a hfp. i am very concerned and just want to know if anyone or anyones child has been through this before ? is liver involvment commen with cf ? what can cause a cfers liver enzymes to go up ? and what happens if actigall doesn't work she's only 2 and you can't tell by looking at her that anythings wrong w her she's 30 pnds and her lungs are doing great just sinus problems. just very concerned and worried that they may say that her liver is bad and she needs a transplant any answers or help would be very much appreciated thanks so much

concerned mom
mom of 2 yr old little girl w / cf and 10 yr old daughter carrier of delta f508

CFMOM65 · Mar 26, 2008

hi everyone it's been awhile since i've posted but i'm very concerned because my 2 yr old daughter w / cf has been having very high liver enzymes. shes had problems w / elevated liver enzymes since she was 2 months old and has taken actigall wich in the past when her enzymes go up they increase the actigall and it brings her enzymes back into the normal range. in the past few months her liver enzymes have gone up the dr increased her actigall from 90 mgs to 100 mgs hoping that would do the trick but it didn't they got higher , so then they ordered a liver sono wich showed that she has a fatty liver and her gallbladder is extemly small and contracted and dilated. the drs didn't seem to concerned or explain anything very well they just said we will redo her bloodwork in a few weeks, so they did and i just got the results back and her alt is 224 and her alt is 164 wich means its gotten alot higher than the last test. now they increased the dosage of her actigall to 150 mgs and in a couple of weeks they want to do a battery of blood tests a cmv , cpk , ebv , hepatitis panel and hepatitis c antibody - KIBA , serum copper , ceruloplasmin , antitrypin phenotype and a hfp. i am very concerned and just want to know if anyone or anyones child has been through this before ? is liver involvment commen with cf ? what can cause a cfers liver enzymes to go up ? and what happens if actigall doesn't work she's only 2 and you can't tell by looking at her that anythings wrong w her she's 30 pnds and her lungs are doing great just sinus problems. just very concerned and worried that they may say that her liver is bad and she needs a transplant any answers or help would be very much appreciated thanks so much

concerned mom
mom of 2 yr old little girl w / cf and 10 yr old daughter carrier of delta f508

CFMOM65 · Mar 26, 2008

hi everyone it's been awhile since i've posted but i'm very concerned because my 2 yr old daughter w / cf has been having very high liver enzymes. shes had problems w / elevated liver enzymes since she was 2 months old and has taken actigall wich in the past when her enzymes go up they increase the actigall and it brings her enzymes back into the normal range. in the past few months her liver enzymes have gone up the dr increased her actigall from 90 mgs to 100 mgs hoping that would do the trick but it didn't they got higher , so then they ordered a liver sono wich showed that she has a fatty liver and her gallbladder is extemly small and contracted and dilated. the drs didn't seem to concerned or explain anything very well they just said we will redo her bloodwork in a few weeks, so they did and i just got the results back and her alt is 224 and her alt is 164 wich means its gotten alot higher than the last test. now they increased the dosage of her actigall to 150 mgs and in a couple of weeks they want to do a battery of blood tests a cmv , cpk , ebv , hepatitis panel and hepatitis c antibody - KIBA , serum copper , ceruloplasmin , antitrypin phenotype and a hfp. i am very concerned and just want to know if anyone or anyones child has been through this before ? is liver involvment commen with cf ? what can cause a cfers liver enzymes to go up ? and what happens if actigall doesn't work she's only 2 and you can't tell by looking at her that anythings wrong w her she's 30 pnds and her lungs are doing great just sinus problems. just very concerned and worried that they may say that her liver is bad and she needs a transplant any answers or help would be very much appreciated thanks so much

concerned mom
mom of 2 yr old little girl w / cf and 10 yr old daughter carrier of delta f508

CFMOM65 · Mar 26, 2008

hi everyone it's been awhile since i've posted but i'm very concerned because my 2 yr old daughter w / cf has been having very high liver enzymes. shes had problems w / elevated liver enzymes since she was 2 months old and has taken actigall wich in the past when her enzymes go up they increase the actigall and it brings her enzymes back into the normal range. in the past few months her liver enzymes have gone up the dr increased her actigall from 90 mgs to 100 mgs hoping that would do the trick but it didn't they got higher , so then they ordered a liver sono wich showed that she has a fatty liver and her gallbladder is extemly small and contracted and dilated. the drs didn't seem to concerned or explain anything very well they just said we will redo her bloodwork in a few weeks, so they did and i just got the results back and her alt is 224 and her alt is 164 wich means its gotten alot higher than the last test. now they increased the dosage of her actigall to 150 mgs and in a couple of weeks they want to do a battery of blood tests a cmv , cpk , ebv , hepatitis panel and hepatitis c antibody - KIBA , serum copper , ceruloplasmin , antitrypin phenotype and a hfp. i am very concerned and just want to know if anyone or anyones child has been through this before ? is liver involvment commen with cf ? what can cause a cfers liver enzymes to go up ? and what happens if actigall doesn't work she's only 2 and you can't tell by looking at her that anythings wrong w her she's 30 pnds and her lungs are doing great just sinus problems. just very concerned and worried that they may say that her liver is bad and she needs a transplant any answers or help would be very much appreciated thanks so much

concerned mom
mom of 2 yr old little girl w / cf and 10 yr old daughter carrier of delta f508

CFMOM65 · Mar 26, 2008

hi everyone it's been awhile since i've posted but i'm very concerned because my 2 yr old daughter w / cf has been having very high liver enzymes. shes had problems w / elevated liver enzymes since she was 2 months old and has taken actigall wich in the past when her enzymes go up they increase the actigall and it brings her enzymes back into the normal range. in the past few months her liver enzymes have gone up the dr increased her actigall from 90 mgs to 100 mgs hoping that would do the trick but it didn't they got higher , so then they ordered a liver sono wich showed that she has a fatty liver and her gallbladder is extemly small and contracted and dilated. the drs didn't seem to concerned or explain anything very well they just said we will redo her bloodwork in a few weeks, so they did and i just got the results back and her alt is 224 and her alt is 164 wich means its gotten alot higher than the last test. now they increased the dosage of her actigall to 150 mgs and in a couple of weeks they want to do a battery of blood tests a cmv , cpk , ebv , hepatitis panel and hepatitis c antibody - KIBA , serum copper , ceruloplasmin , antitrypin phenotype and a hfp. i am very concerned and just want to know if anyone or anyones child has been through this before ? is liver involvment commen with cf ? what can cause a cfers liver enzymes to go up ? and what happens if actigall doesn't work she's only 2 and you can't tell by looking at her that anythings wrong w her she's 30 pnds and her lungs are doing great just sinus problems. just very concerned and worried that they may say that her liver is bad and she needs a transplant any answers or help would be very much appreciated thanks so much
 
 concerned mom
 mom of 2 yr old little girl w / cf and 10 yr old daughter carrier of delta f508

ashton2005 · Mar 26, 2008

SOrry about everything that you are going through.. We had a similar situation with my son about 7 months ago.. right around when he was 2.. they did blood work and we had numbers up to like 200 for one of them and 800 for the other.. i dont remember which was what now.. But they increased him to 2ml which is 120mg of ursodiol and just like you they still didnt move much... well they ran all the same Bloodwork that your little one is going to have done.. everything was normal other than little things here and there.. Also his liver functions were down not normal but more like where your numbers for your little one are now.... we see the top GI doctor at Riley and she said kiddos when they have a virus or infection their numbers can gooo WAY up for a while then come down and so on and so on.. I know its hard not to worry because that is all i did while waiting.. but hopefully your little one will turn out like mine and it work its way back down.. We do still keep a close eye on his liver because again like your little one hes been on ursodiol since he was 1 week old and his liver functions continue to never be normal but not near as high as they were when we did all the testing... if there are any other questions you have you can PM me if you would like!! sorry this is kind of long!!

ashton2005 · Mar 26, 2008

SOrry about everything that you are going through.. We had a similar situation with my son about 7 months ago.. right around when he was 2.. they did blood work and we had numbers up to like 200 for one of them and 800 for the other.. i dont remember which was what now.. But they increased him to 2ml which is 120mg of ursodiol and just like you they still didnt move much... well they ran all the same Bloodwork that your little one is going to have done.. everything was normal other than little things here and there.. Also his liver functions were down not normal but more like where your numbers for your little one are now.... we see the top GI doctor at Riley and she said kiddos when they have a virus or infection their numbers can gooo WAY up for a while then come down and so on and so on.. I know its hard not to worry because that is all i did while waiting.. but hopefully your little one will turn out like mine and it work its way back down.. We do still keep a close eye on his liver because again like your little one hes been on ursodiol since he was 1 week old and his liver functions continue to never be normal but not near as high as they were when we did all the testing... if there are any other questions you have you can PM me if you would like!! sorry this is kind of long!!

ashton2005 · Mar 26, 2008

SOrry about everything that you are going through.. We had a similar situation with my son about 7 months ago.. right around when he was 2.. they did blood work and we had numbers up to like 200 for one of them and 800 for the other.. i dont remember which was what now.. But they increased him to 2ml which is 120mg of ursodiol and just like you they still didnt move much... well they ran all the same Bloodwork that your little one is going to have done.. everything was normal other than little things here and there.. Also his liver functions were down not normal but more like where your numbers for your little one are now.... we see the top GI doctor at Riley and she said kiddos when they have a virus or infection their numbers can gooo WAY up for a while then come down and so on and so on.. I know its hard not to worry because that is all i did while waiting.. but hopefully your little one will turn out like mine and it work its way back down.. We do still keep a close eye on his liver because again like your little one hes been on ursodiol since he was 1 week old and his liver functions continue to never be normal but not near as high as they were when we did all the testing... if there are any other questions you have you can PM me if you would like!! sorry this is kind of long!!

ashton2005 · Mar 26, 2008

SOrry about everything that you are going through.. We had a similar situation with my son about 7 months ago.. right around when he was 2.. they did blood work and we had numbers up to like 200 for one of them and 800 for the other.. i dont remember which was what now.. But they increased him to 2ml which is 120mg of ursodiol and just like you they still didnt move much... well they ran all the same Bloodwork that your little one is going to have done.. everything was normal other than little things here and there.. Also his liver functions were down not normal but more like where your numbers for your little one are now.... we see the top GI doctor at Riley and she said kiddos when they have a virus or infection their numbers can gooo WAY up for a while then come down and so on and so on.. I know its hard not to worry because that is all i did while waiting.. but hopefully your little one will turn out like mine and it work its way back down.. We do still keep a close eye on his liver because again like your little one hes been on ursodiol since he was 1 week old and his liver functions continue to never be normal but not near as high as they were when we did all the testing... if there are any other questions you have you can PM me if you would like!! sorry this is kind of long!!

ashton2005 · Mar 26, 2008

SOrry about everything that you are going through.. We had a similar situation with my son about 7 months ago.. right around when he was 2.. they did blood work and we had numbers up to like 200 for one of them and 800 for the other.. i dont remember which was what now.. But they increased him to 2ml which is 120mg of ursodiol and just like you they still didnt move much... well they ran all the same Bloodwork that your little one is going to have done.. everything was normal other than little things here and there.. Also his liver functions were down not normal but more like where your numbers for your little one are now.... we see the top GI doctor at Riley and she said kiddos when they have a virus or infection their numbers can gooo WAY up for a while then come down and so on and so on.. I know its hard not to worry because that is all i did while waiting.. but hopefully your little one will turn out like mine and it work its way back down.. We do still keep a close eye on his liver because again like your little one hes been on ursodiol since he was 1 week old and his liver functions continue to never be normal but not near as high as they were when we did all the testing... if there are any other questions you have you can PM me if you would like!! sorry this is kind of long!!

pjspiegle · Mar 26, 2008

Don't know if it helps or not, but liver issues is very common in CF. Mine has never had quite that big of a problem, but his liver tests often come back too high.

Not that yours will need a liver transplant, my mom works for transplant surgeons and liver transplants are the coolest. The liver is one of the coolest organs as it can regenerate itself, can be donated by a family member or match and both the recipant and the donors liver will grow back to "normal" sizes, and usually less complicated than other transplants. Still would not want my little one, or any family member for that fact, to have a transplant, but if we were told we had to choose an organ for transplant, I would have to choose the liver. Doubt this is where you are heading quite yet, but hope this helps make you feel a little bit better.

It is normal for CFers to have liver issues and even have gallbladder surgeries at very young ages.

Keep us posted, will pray for you and your little one,

Patty

pjspiegle · Mar 26, 2008

Don't know if it helps or not, but liver issues is very common in CF. Mine has never had quite that big of a problem, but his liver tests often come back too high.

Not that yours will need a liver transplant, my mom works for transplant surgeons and liver transplants are the coolest. The liver is one of the coolest organs as it can regenerate itself, can be donated by a family member or match and both the recipant and the donors liver will grow back to "normal" sizes, and usually less complicated than other transplants. Still would not want my little one, or any family member for that fact, to have a transplant, but if we were told we had to choose an organ for transplant, I would have to choose the liver. Doubt this is where you are heading quite yet, but hope this helps make you feel a little bit better.

It is normal for CFers to have liver issues and even have gallbladder surgeries at very young ages.

Keep us posted, will pray for you and your little one,

Patty

pjspiegle · Mar 26, 2008

Don't know if it helps or not, but liver issues is very common in CF. Mine has never had quite that big of a problem, but his liver tests often come back too high.

Not that yours will need a liver transplant, my mom works for transplant surgeons and liver transplants are the coolest. The liver is one of the coolest organs as it can regenerate itself, can be donated by a family member or match and both the recipant and the donors liver will grow back to "normal" sizes, and usually less complicated than other transplants. Still would not want my little one, or any family member for that fact, to have a transplant, but if we were told we had to choose an organ for transplant, I would have to choose the liver. Doubt this is where you are heading quite yet, but hope this helps make you feel a little bit better.

It is normal for CFers to have liver issues and even have gallbladder surgeries at very young ages.

Keep us posted, will pray for you and your little one,

Patty

pjspiegle · Mar 26, 2008

Don't know if it helps or not, but liver issues is very common in CF. Mine has never had quite that big of a problem, but his liver tests often come back too high.

Not that yours will need a liver transplant, my mom works for transplant surgeons and liver transplants are the coolest. The liver is one of the coolest organs as it can regenerate itself, can be donated by a family member or match and both the recipant and the donors liver will grow back to "normal" sizes, and usually less complicated than other transplants. Still would not want my little one, or any family member for that fact, to have a transplant, but if we were told we had to choose an organ for transplant, I would have to choose the liver. Doubt this is where you are heading quite yet, but hope this helps make you feel a little bit better.

It is normal for CFers to have liver issues and even have gallbladder surgeries at very young ages.

Keep us posted, will pray for you and your little one,

Patty

pjspiegle · Mar 26, 2008

Don't know if it helps or not, but liver issues is very common in CF. Mine has never had quite that big of a problem, but his liver tests often come back too high.
 
 Not that yours will need a liver transplant, my mom works for transplant surgeons and liver transplants are the coolest. The liver is one of the coolest organs as it can regenerate itself, can be donated by a family member or match and both the recipant and the donors liver will grow back to "normal" sizes, and usually less complicated than other transplants. Still would not want my little one, or any family member for that fact, to have a transplant, but if we were told we had to choose an organ for transplant, I would have to choose the liver. Doubt this is where you are heading quite yet, but hope this helps make you feel a little bit better.
 
 It is normal for CFers to have liver issues and even have gallbladder surgeries at very young ages.
 
 Keep us posted, will pray for you and your little one,
 
 Patty

Mommafirst · Mar 26, 2008

I can totally see where you would be a concerned mom about this. I don't know a whole lot about it. I know that my 2 year old had elevated liver numbers after 2 weeks on IVs last year. They did go back down though without any intervention. I mentioned this to our pediatrician who told me not to worry because CFers don't usually have liver problems -- at which point I realized I can't discuss CF with her because she doesn't really know much at all. Our CF docs were pretty clear that livers can absolutely be involved in a child's CF.

Mommafirst · Mar 26, 2008

I can totally see where you would be a concerned mom about this. I don't know a whole lot about it. I know that my 2 year old had elevated liver numbers after 2 weeks on IVs last year. They did go back down though without any intervention. I mentioned this to our pediatrician who told me not to worry because CFers don't usually have liver problems -- at which point I realized I can't discuss CF with her because she doesn't really know much at all. Our CF docs were pretty clear that livers can absolutely be involved in a child's CF.

Mommafirst · Mar 26, 2008

I can totally see where you would be a concerned mom about this. I don't know a whole lot about it. I know that my 2 year old had elevated liver numbers after 2 weeks on IVs last year. They did go back down though without any intervention. I mentioned this to our pediatrician who told me not to worry because CFers don't usually have liver problems -- at which point I realized I can't discuss CF with her because she doesn't really know much at all. Our CF docs were pretty clear that livers can absolutely be involved in a child's CF.

Mommafirst · Mar 26, 2008

I can totally see where you would be a concerned mom about this. I don't know a whole lot about it. I know that my 2 year old had elevated liver numbers after 2 weeks on IVs last year. They did go back down though without any intervention. I mentioned this to our pediatrician who told me not to worry because CFers don't usually have liver problems -- at which point I realized I can't discuss CF with her because she doesn't really know much at all. Our CF docs were pretty clear that livers can absolutely be involved in a child's CF.

Mommafirst · Mar 26, 2008

I can totally see where you would be a concerned mom about this. I don't know a whole lot about it. I know that my 2 year old had elevated liver numbers after 2 weeks on IVs last year. They did go back down though without any intervention. I mentioned this to our pediatrician who told me not to worry because CFers don't usually have liver problems -- at which point I realized I can't discuss CF with her because she doesn't really know much at all. Our CF docs were pretty clear that livers can absolutely be involved in a child's CF.

LIVER PROBLEMS AND CF

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