Jaundice and Biliary atresia or just a blockage

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ashton2005

New member
Hello everyone, Well like i said we did end up going to the cf clinic at riley hospital and they are great. We are scheduled to have a HIDA scan tomorrow due to ashton still being a little jaundiced its sitting at like 5.9.. they want to check his bile outflow from his liver to see if there is just a blockage or a biliary atresia.. Has anyone ever had this issue with there children. Im just looking for some insight and experiences with this problem.. Hopefully its nothing and we are just looking at a slow liver due to elevated liver functions.. thanks in advance everyone

Christi
Ashton 3 1/2 mo w/ cf
Abbi 5 yo w/o cf
 
A

ashton2005

New member
Hello everyone, Well like i said we did end up going to the cf clinic at riley hospital and they are great. We are scheduled to have a HIDA scan tomorrow due to ashton still being a little jaundiced its sitting at like 5.9.. they want to check his bile outflow from his liver to see if there is just a blockage or a biliary atresia.. Has anyone ever had this issue with there children. Im just looking for some insight and experiences with this problem.. Hopefully its nothing and we are just looking at a slow liver due to elevated liver functions.. thanks in advance everyone

Christi
Ashton 3 1/2 mo w/ cf
Abbi 5 yo w/o cf
 
A

anonymous

New member
Hi,

I have triplets who are seven all have cf. One of them also has biliary atresia, he had a kasai proceedure done at age 13weeks. It took the doctors weeks to diagnose my son, and it wasn't until they went in to do exploratory surgery that they confirmed the biliary atresia. He had ultrasounds, hidascans, liver biopsy, and all were pretty much inconclusive. The doctor kept telling me that it was too rare for him to have cf and biliary atresia. Well, he did. They did the Kasai right then and there. I was terrified because everything I had read stated that the best results from Kasai were if performed before 12 weeks. Like I said he is now 7 and his liver is doing great. We had a scare when he was still a baby, and he was rehospitalized and even listed for a liver transplant. He miracously made a complete turn around, the doctors are amazed at how well he is doing. I hope your scan went well, let us know.

Lisa
 
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anonymous

New member
Hi,

I have triplets who are seven all have cf. One of them also has biliary atresia, he had a kasai proceedure done at age 13weeks. It took the doctors weeks to diagnose my son, and it wasn't until they went in to do exploratory surgery that they confirmed the biliary atresia. He had ultrasounds, hidascans, liver biopsy, and all were pretty much inconclusive. The doctor kept telling me that it was too rare for him to have cf and biliary atresia. Well, he did. They did the Kasai right then and there. I was terrified because everything I had read stated that the best results from Kasai were if performed before 12 weeks. Like I said he is now 7 and his liver is doing great. We had a scare when he was still a baby, and he was rehospitalized and even listed for a liver transplant. He miracously made a complete turn around, the doctors are amazed at how well he is doing. I hope your scan went well, let us know.

Lisa
 
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anonymous

New member
I know this post is a month old. I just had to respond though.

My 3 month has CF and was diagnosed last week with Bilary Atresia and the Kasai performed last Wednesday.

The doctors acted like it was SO rare to have CF and bilary atresa that it caught me off guard to see someone else their child has both
 
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anonymous

New member
When my son was still in the hospital at a few weeks old he began to get jaundiced and have elevated liver levels. They began to prepare us for biliary atresia. Thankfully we had an excellent GI doc who wanted to start DS on actigall and phenobarbitol and see if his levels would go down before he would do a biopsy or anything. In a few days he began improving and the doc just said that his bile flow had become blocked.

Nicole
 
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ashton2005

New member
well it dosent look like biliary atresia for ashton. we did a HIDA scan and nothing went through although his bili levels are almost all of the way down to where they should be.. so hopefully everything is ok

christi
 
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anonymous

New member
DS has been on actigall since he was in the nicu for his bowel problems. And I think it's been 3 mls 3x a day for a long time. Not sure the concentration 20 mg/so many mls???. Maybe it's an issue that he's growing and needs more.

Liza
 
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ashton2005

New member
Ashtons actigall is 60mg/ml and he takes 1.2ml two times a day.. and it jsut got increased it was 1ml twice a day!!

christi
 
3

3timesthefun

New member
Hi,
I saw your comment on the Cf and biliary Atresia. Like you our doctors thouth it was very rare for him to have both . Where do you live, we go to Children's Hospital in Los Angeles. He is now 7 and his liver is doing great. Any questions, let me know.
 
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