Actigall- Liver,etc

jennc0315 · Sep 10, 2009

Hello everyone,

Logan finally saw a liver specialist on 9/1 at Children's Memorial in Chicago (brief history -he has had elevated AST and ALT levels for a year, negative biopsy and ultrasound). While he doesnt have a diagnosis <img src="i/expressions/face-icon-small-frown.gif" border="0"> He has made some suggestions.....
Put Logan on Actigal - see if that brings down his enzyme levels. If this works he believes Logan has CF related liver disease even with normal GGT levels. He believes the disease may be 'focal' and the biopsy didnt pick it up.

If this doesnt work - get an echo of his heart, There are some heart conditions that could cause elevated AST and ALT. Finally, get some blood work to check his muscles, may also be a cause of the elevated AST/ALT.

Are any of your kids on Actigall? At what dose? Logan weighs about 28 lbs. Our Primary doc looked up the med. and said it wasnt recommend for kids but admitted that the GI docs may have better info on this.

Has anyone ever gone through similiar experiences? (I know you have <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) I guess I am looking for reasurance in some way. I was hoping that the visit would bring answers not more questions. Looking at the bright side..At least the boys got a great visit to Chicago out of the deal <img src="i/expressions/face-icon-small-wink.gif" border="0"> I just love Chicago.

Thank you in advance for your advice, opinions and stories!!

Jenn

jennc0315 · Sep 10, 2009

Hello everyone,

Logan finally saw a liver specialist on 9/1 at Children's Memorial in Chicago (brief history -he has had elevated AST and ALT levels for a year, negative biopsy and ultrasound). While he doesnt have a diagnosis <img src="i/expressions/face-icon-small-frown.gif" border="0"> He has made some suggestions.....
Put Logan on Actigal - see if that brings down his enzyme levels. If this works he believes Logan has CF related liver disease even with normal GGT levels. He believes the disease may be 'focal' and the biopsy didnt pick it up.

If this doesnt work - get an echo of his heart, There are some heart conditions that could cause elevated AST and ALT. Finally, get some blood work to check his muscles, may also be a cause of the elevated AST/ALT.

Are any of your kids on Actigall? At what dose? Logan weighs about 28 lbs. Our Primary doc looked up the med. and said it wasnt recommend for kids but admitted that the GI docs may have better info on this.

Has anyone ever gone through similiar experiences? (I know you have <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) I guess I am looking for reasurance in some way. I was hoping that the visit would bring answers not more questions. Looking at the bright side..At least the boys got a great visit to Chicago out of the deal <img src="i/expressions/face-icon-small-wink.gif" border="0"> I just love Chicago.

Thank you in advance for your advice, opinions and stories!!

Jenn

jennc0315 · Sep 10, 2009

Hello everyone,

Logan finally saw a liver specialist on 9/1 at Children's Memorial in Chicago (brief history -he has had elevated AST and ALT levels for a year, negative biopsy and ultrasound). While he doesnt have a diagnosis <img src="i/expressions/face-icon-small-frown.gif" border="0"> He has made some suggestions.....
Put Logan on Actigal - see if that brings down his enzyme levels. If this works he believes Logan has CF related liver disease even with normal GGT levels. He believes the disease may be 'focal' and the biopsy didnt pick it up.

If this doesnt work - get an echo of his heart, There are some heart conditions that could cause elevated AST and ALT. Finally, get some blood work to check his muscles, may also be a cause of the elevated AST/ALT.

Are any of your kids on Actigall? At what dose? Logan weighs about 28 lbs. Our Primary doc looked up the med. and said it wasnt recommend for kids but admitted that the GI docs may have better info on this.

Has anyone ever gone through similiar experiences? (I know you have <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) I guess I am looking for reasurance in some way. I was hoping that the visit would bring answers not more questions. Looking at the bright side..At least the boys got a great visit to Chicago out of the deal <img src="i/expressions/face-icon-small-wink.gif" border="0"> I just love Chicago.

Thank you in advance for your advice, opinions and stories!!

Jenn

jennc0315 · Sep 10, 2009

Hello everyone,

Logan finally saw a liver specialist on 9/1 at Children's Memorial in Chicago (brief history -he has had elevated AST and ALT levels for a year, negative biopsy and ultrasound). While he doesnt have a diagnosis <img src="i/expressions/face-icon-small-frown.gif" border="0"> He has made some suggestions.....
Put Logan on Actigal - see if that brings down his enzyme levels. If this works he believes Logan has CF related liver disease even with normal GGT levels. He believes the disease may be 'focal' and the biopsy didnt pick it up.

If this doesnt work - get an echo of his heart, There are some heart conditions that could cause elevated AST and ALT. Finally, get some blood work to check his muscles, may also be a cause of the elevated AST/ALT.

Are any of your kids on Actigall? At what dose? Logan weighs about 28 lbs. Our Primary doc looked up the med. and said it wasnt recommend for kids but admitted that the GI docs may have better info on this.

Has anyone ever gone through similiar experiences? (I know you have <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) I guess I am looking for reasurance in some way. I was hoping that the visit would bring answers not more questions. Looking at the bright side..At least the boys got a great visit to Chicago out of the deal <img src="i/expressions/face-icon-small-wink.gif" border="0"> I just love Chicago.

Thank you in advance for your advice, opinions and stories!!

Jenn

jennc0315 · Sep 10, 2009

Hello everyone,
 
 Logan finally saw a liver specialist on 9/1 at Children's Memorial in Chicago (brief history -he has had elevated AST and ALT levels for a year, negative biopsy and ultrasound). While he doesnt have a diagnosis <img src="i/expressions/face-icon-small-frown.gif" border="0"> He has made some suggestions.....
 Put Logan on Actigal - see if that brings down his enzyme levels. If this works he believes Logan has CF related liver disease even with normal GGT levels. He believes the disease may be 'focal' and the biopsy didnt pick it up.
 
 If this doesnt work - get an echo of his heart, There are some heart conditions that could cause elevated AST and ALT. Finally, get some blood work to check his muscles, may also be a cause of the elevated AST/ALT.
 
 Are any of your kids on Actigall? At what dose? Logan weighs about 28 lbs. Our Primary doc looked up the med. and said it wasnt recommend for kids but admitted that the GI docs may have better info on this.
 
 Has anyone ever gone through similiar experiences? (I know you have <img src="i/expressions/face-icon-small-wink.gif" border="0"> ) I guess I am looking for reasurance in some way. I was hoping that the visit would bring answers not more questions. Looking at the bright side..At least the boys got a great visit to Chicago out of the deal <img src="i/expressions/face-icon-small-wink.gif" border="0"> I just love Chicago.
 
 Thank you in advance for your advice, opinions and stories!!
 
 Jenn

Ratatosk · Sep 10, 2009

DS has been on 20 mg/ml since he was a baby. Think he started with 3 ml three times a day, then 5 ml and for the past couple years has been on 7.5 ml. He's was at 40 pounds for the past couple years and is not up to 47, so I suspect there will be an increase at some point. It's the only liquid med he's on anymore because they don't have a small enough dosage in pill form for him. When we first got the script filled our pharmacist commented that he had to get out a text book to figure it out. I guess they have to take a powder form and compound it... Also referred to as urisidol (sp).

To me it tastes like cherry vomit (bile). He doesn't seem to mind it. He was put on it in the NICU due to elevated liver levels from what they suspected was caused by being on TPN. His doctors kept him on it to keep his liver and gall bladder happy. And it did work to keep his levels within a normal range.

Ratatosk · Sep 10, 2009

DS has been on 20 mg/ml since he was a baby. Think he started with 3 ml three times a day, then 5 ml and for the past couple years has been on 7.5 ml. He's was at 40 pounds for the past couple years and is not up to 47, so I suspect there will be an increase at some point. It's the only liquid med he's on anymore because they don't have a small enough dosage in pill form for him. When we first got the script filled our pharmacist commented that he had to get out a text book to figure it out. I guess they have to take a powder form and compound it... Also referred to as urisidol (sp).

To me it tastes like cherry vomit (bile). He doesn't seem to mind it. He was put on it in the NICU due to elevated liver levels from what they suspected was caused by being on TPN. His doctors kept him on it to keep his liver and gall bladder happy. And it did work to keep his levels within a normal range.

Ratatosk · Sep 10, 2009

DS has been on 20 mg/ml since he was a baby. Think he started with 3 ml three times a day, then 5 ml and for the past couple years has been on 7.5 ml. He's was at 40 pounds for the past couple years and is not up to 47, so I suspect there will be an increase at some point. It's the only liquid med he's on anymore because they don't have a small enough dosage in pill form for him. When we first got the script filled our pharmacist commented that he had to get out a text book to figure it out. I guess they have to take a powder form and compound it... Also referred to as urisidol (sp).

To me it tastes like cherry vomit (bile). He doesn't seem to mind it. He was put on it in the NICU due to elevated liver levels from what they suspected was caused by being on TPN. His doctors kept him on it to keep his liver and gall bladder happy. And it did work to keep his levels within a normal range.

Ratatosk · Sep 10, 2009

DS has been on 20 mg/ml since he was a baby. Think he started with 3 ml three times a day, then 5 ml and for the past couple years has been on 7.5 ml. He's was at 40 pounds for the past couple years and is not up to 47, so I suspect there will be an increase at some point. It's the only liquid med he's on anymore because they don't have a small enough dosage in pill form for him. When we first got the script filled our pharmacist commented that he had to get out a text book to figure it out. I guess they have to take a powder form and compound it... Also referred to as urisidol (sp).

To me it tastes like cherry vomit (bile). He doesn't seem to mind it. He was put on it in the NICU due to elevated liver levels from what they suspected was caused by being on TPN. His doctors kept him on it to keep his liver and gall bladder happy. And it did work to keep his levels within a normal range.

Ratatosk · Sep 10, 2009

DS has been on 20 mg/ml since he was a baby. Think he started with 3 ml three times a day, then 5 ml and for the past couple years has been on 7.5 ml. He's was at 40 pounds for the past couple years and is not up to 47, so I suspect there will be an increase at some point. It's the only liquid med he's on anymore because they don't have a small enough dosage in pill form for him. When we first got the script filled our pharmacist commented that he had to get out a text book to figure it out. I guess they have to take a powder form and compound it... Also referred to as urisidol (sp).
 
 To me it tastes like cherry vomit (bile). He doesn't seem to mind it. He was put on it in the NICU due to elevated liver levels from what they suspected was caused by being on TPN. His doctors kept him on it to keep his liver and gall bladder happy. And it did work to keep his levels within a normal range.

Tcole · Sep 10, 2009

My daughter had to be on actigall for a while. I did notice while she was on it, it caused her to stool more. It seemed to help. We have a great GI doc. Every appt she asked about if i notice any liver problems. Currently, Grayson is doing fine with liver levels. Im not sure the dosage that she was on. Grayson was in NICU for 6 months and she was on a ton of meds. Sorry i can't anymore.

Tcole · Sep 10, 2009

My daughter had to be on actigall for a while. I did notice while she was on it, it caused her to stool more. It seemed to help. We have a great GI doc. Every appt she asked about if i notice any liver problems. Currently, Grayson is doing fine with liver levels. Im not sure the dosage that she was on. Grayson was in NICU for 6 months and she was on a ton of meds. Sorry i can't anymore.

Tcole · Sep 10, 2009

My daughter had to be on actigall for a while. I did notice while she was on it, it caused her to stool more. It seemed to help. We have a great GI doc. Every appt she asked about if i notice any liver problems. Currently, Grayson is doing fine with liver levels. Im not sure the dosage that she was on. Grayson was in NICU for 6 months and she was on a ton of meds. Sorry i can't anymore.

Tcole · Sep 10, 2009

My daughter had to be on actigall for a while. I did notice while she was on it, it caused her to stool more. It seemed to help. We have a great GI doc. Every appt she asked about if i notice any liver problems. Currently, Grayson is doing fine with liver levels. Im not sure the dosage that she was on. Grayson was in NICU for 6 months and she was on a ton of meds. Sorry i can't anymore.

Tcole · Sep 10, 2009

My daughter had to be on actigall for a while. I did notice while she was on it, it caused her to stool more. It seemed to help. We have a great GI doc. Every appt she asked about if i notice any liver problems. Currently, Grayson is doing fine with liver levels. Im not sure the dosage that she was on. Grayson was in NICU for 6 months and she was on a ton of meds. Sorry i can't anymore.

philandas · Sep 10, 2009