DS was on TPN when it happened, wasn't on enzymes yet as he was recovering from surgery due to meconium illeus. Once he was put on the actigall, they also discontinued the TPN AND he started enzymes, the readings became normal. He's still tested each year though.
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Liver functions
- Thread starter NFitzgerald
- Start date
DS was on TPN when it happened, wasn't on enzymes yet as he was recovering from surgery due to meconium illeus. Once he was put on the actigall, they also discontinued the TPN AND he started enzymes, the readings became normal. He's still tested each year though.
DS was on TPN when it happened, wasn't on enzymes yet as he was recovering from surgery due to meconium illeus. Once he was put on the actigall, they also discontinued the TPN AND he started enzymes, the readings became normal. He's still tested each year though.
DS was on TPN when it happened, wasn't on enzymes yet as he was recovering from surgery due to meconium illeus. Once he was put on the actigall, they also discontinued the TPN AND he started enzymes, the readings became normal. He's still tested each year though.
DS was on TPN when it happened, wasn't on enzymes yet as he was recovering from surgery due to meconium illeus. Once he was put on the actigall, they also discontinued the TPN AND he started enzymes, the readings became normal. He's still tested each year though.
DS was on TPN when it happened, wasn't on enzymes yet as he was recovering from surgery due to meconium illeus. Once he was put on the actigall, they also discontinued the TPN AND he started enzymes, the readings became normal. He's still tested each year though.
DS was on TPN when it happened, wasn't on enzymes yet as he was recovering from surgery due to meconium illeus. Once he was put on the actigall, they also discontinued the TPN AND he started enzymes, the readings became normal. He's still tested each year though.
DS was on TPN when it happened, wasn't on enzymes yet as he was recovering from surgery due to meconium illeus. Once he was put on the actigall, they also discontinued the TPN AND he started enzymes, the readings became normal. He's still tested each year though.
DS was on TPN when it happened, wasn't on enzymes yet as he was recovering from surgery due to meconium illeus. Once he was put on the actigall, they also discontinued the TPN AND he started enzymes, the readings became normal. He's still tested each year though.
DS was on TPN when it happened, wasn't on enzymes yet as he was recovering from surgery due to meconium illeus. Once he was put on the actigall, they also discontinued the TPN AND he started enzymes, the readings became normal. He's still tested each year though.
blondelawyer
New member
My husband also has liver issues from CF. About 20% of CF patients have liver problems associated with the CF. My husband has been taking actigal for years. He sees a liver doctor annually to make sure that things are still okay.
One thing to be aware of is that some of the doctors don't think that about the liver complications and prescribe medications that can hurt (like pain medications), so if the liver is a concern, make sure to keep the doctors on their toes about that stuff!
Also, another complication that can come with the liver issues is low clotting factors and platlet counts, which can be complicated. So, just keep that in mind as well.
It is good that they are finding out now so that your son can start on the medication to hopefully halt or at least slow down the progess (actigal) and you can be aware of the issues so that you can keep the doctors in line. I would also insist that your CF doctor send you to a liver specialist. CF doctors, in my experience, are too "lung" focused. Centers have liver docs that are involved, so it shouldn't be a problem.
One thing to be aware of is that some of the doctors don't think that about the liver complications and prescribe medications that can hurt (like pain medications), so if the liver is a concern, make sure to keep the doctors on their toes about that stuff!
Also, another complication that can come with the liver issues is low clotting factors and platlet counts, which can be complicated. So, just keep that in mind as well.
It is good that they are finding out now so that your son can start on the medication to hopefully halt or at least slow down the progess (actigal) and you can be aware of the issues so that you can keep the doctors in line. I would also insist that your CF doctor send you to a liver specialist. CF doctors, in my experience, are too "lung" focused. Centers have liver docs that are involved, so it shouldn't be a problem.
blondelawyer
New member
My husband also has liver issues from CF. About 20% of CF patients have liver problems associated with the CF. My husband has been taking actigal for years. He sees a liver doctor annually to make sure that things are still okay.
One thing to be aware of is that some of the doctors don't think that about the liver complications and prescribe medications that can hurt (like pain medications), so if the liver is a concern, make sure to keep the doctors on their toes about that stuff!
Also, another complication that can come with the liver issues is low clotting factors and platlet counts, which can be complicated. So, just keep that in mind as well.
It is good that they are finding out now so that your son can start on the medication to hopefully halt or at least slow down the progess (actigal) and you can be aware of the issues so that you can keep the doctors in line. I would also insist that your CF doctor send you to a liver specialist. CF doctors, in my experience, are too "lung" focused. Centers have liver docs that are involved, so it shouldn't be a problem.
One thing to be aware of is that some of the doctors don't think that about the liver complications and prescribe medications that can hurt (like pain medications), so if the liver is a concern, make sure to keep the doctors on their toes about that stuff!
Also, another complication that can come with the liver issues is low clotting factors and platlet counts, which can be complicated. So, just keep that in mind as well.
It is good that they are finding out now so that your son can start on the medication to hopefully halt or at least slow down the progess (actigal) and you can be aware of the issues so that you can keep the doctors in line. I would also insist that your CF doctor send you to a liver specialist. CF doctors, in my experience, are too "lung" focused. Centers have liver docs that are involved, so it shouldn't be a problem.
blondelawyer
New member
My husband also has liver issues from CF. About 20% of CF patients have liver problems associated with the CF. My husband has been taking actigal for years. He sees a liver doctor annually to make sure that things are still okay.
One thing to be aware of is that some of the doctors don't think that about the liver complications and prescribe medications that can hurt (like pain medications), so if the liver is a concern, make sure to keep the doctors on their toes about that stuff!
Also, another complication that can come with the liver issues is low clotting factors and platlet counts, which can be complicated. So, just keep that in mind as well.
It is good that they are finding out now so that your son can start on the medication to hopefully halt or at least slow down the progess (actigal) and you can be aware of the issues so that you can keep the doctors in line. I would also insist that your CF doctor send you to a liver specialist. CF doctors, in my experience, are too "lung" focused. Centers have liver docs that are involved, so it shouldn't be a problem.
One thing to be aware of is that some of the doctors don't think that about the liver complications and prescribe medications that can hurt (like pain medications), so if the liver is a concern, make sure to keep the doctors on their toes about that stuff!
Also, another complication that can come with the liver issues is low clotting factors and platlet counts, which can be complicated. So, just keep that in mind as well.
It is good that they are finding out now so that your son can start on the medication to hopefully halt or at least slow down the progess (actigal) and you can be aware of the issues so that you can keep the doctors in line. I would also insist that your CF doctor send you to a liver specialist. CF doctors, in my experience, are too "lung" focused. Centers have liver docs that are involved, so it shouldn't be a problem.
blondelawyer
New member
My husband also has liver issues from CF. About 20% of CF patients have liver problems associated with the CF. My husband has been taking actigal for years. He sees a liver doctor annually to make sure that things are still okay.
One thing to be aware of is that some of the doctors don't think that about the liver complications and prescribe medications that can hurt (like pain medications), so if the liver is a concern, make sure to keep the doctors on their toes about that stuff!
Also, another complication that can come with the liver issues is low clotting factors and platlet counts, which can be complicated. So, just keep that in mind as well.
It is good that they are finding out now so that your son can start on the medication to hopefully halt or at least slow down the progess (actigal) and you can be aware of the issues so that you can keep the doctors in line. I would also insist that your CF doctor send you to a liver specialist. CF doctors, in my experience, are too "lung" focused. Centers have liver docs that are involved, so it shouldn't be a problem.
One thing to be aware of is that some of the doctors don't think that about the liver complications and prescribe medications that can hurt (like pain medications), so if the liver is a concern, make sure to keep the doctors on their toes about that stuff!
Also, another complication that can come with the liver issues is low clotting factors and platlet counts, which can be complicated. So, just keep that in mind as well.
It is good that they are finding out now so that your son can start on the medication to hopefully halt or at least slow down the progess (actigal) and you can be aware of the issues so that you can keep the doctors in line. I would also insist that your CF doctor send you to a liver specialist. CF doctors, in my experience, are too "lung" focused. Centers have liver docs that are involved, so it shouldn't be a problem.
blondelawyer
New member
My husband also has liver issues from CF. About 20% of CF patients have liver problems associated with the CF. My husband has been taking actigal for years. He sees a liver doctor annually to make sure that things are still okay.
<br />
<br />One thing to be aware of is that some of the doctors don't think that about the liver complications and prescribe medications that can hurt (like pain medications), so if the liver is a concern, make sure to keep the doctors on their toes about that stuff!
<br />
<br />Also, another complication that can come with the liver issues is low clotting factors and platlet counts, which can be complicated. So, just keep that in mind as well.
<br />
<br />It is good that they are finding out now so that your son can start on the medication to hopefully halt or at least slow down the progess (actigal) and you can be aware of the issues so that you can keep the doctors in line. I would also insist that your CF doctor send you to a liver specialist. CF doctors, in my experience, are too "lung" focused. Centers have liver docs that are involved, so it shouldn't be a problem.
<br />
<br />One thing to be aware of is that some of the doctors don't think that about the liver complications and prescribe medications that can hurt (like pain medications), so if the liver is a concern, make sure to keep the doctors on their toes about that stuff!
<br />
<br />Also, another complication that can come with the liver issues is low clotting factors and platlet counts, which can be complicated. So, just keep that in mind as well.
<br />
<br />It is good that they are finding out now so that your son can start on the medication to hopefully halt or at least slow down the progess (actigal) and you can be aware of the issues so that you can keep the doctors in line. I would also insist that your CF doctor send you to a liver specialist. CF doctors, in my experience, are too "lung" focused. Centers have liver docs that are involved, so it shouldn't be a problem.
Hi Nicole -
We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Hi Nicole -
We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Hi Nicole -
We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Hi Nicole -
We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Hi Nicole -
<br />
<br /> We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
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<br /> We know all about the liver stuff here, but I don't think it's common. I've heard 15-20% as well. Our daughter became jaundiced with enlarged liver at 2 months. We were also put on actigal twice a day. Her liver enzymes never returned to normal. We get ultrasounds every 6 months. We've also had two liver biopsies. Our last u/s was a couple weeks ago and showed she has early portal hypertension. Eventually she will require a liver transplant. Our doctor has told us he doesn't know how much time she has - it will depend on how her liver disease progresses. The biggest factor they will look at is growth. On the ultrasound they look for how the blood flows. Our daughter has enough constriction to make both her liver and spleen large. I think we're a more unusual case, though. I haven't heard of lots of other kids as young as ours with this much trouble. <img src="i/expressions/face-icon-small-sad.gif" border="0">
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