Blockage in the liver

[anonymous]

My 2 yo son had labs done last week. He cultured his usual bacteria and was put on an antibiotic. From his blood it showed that his liver levels were elevated. The nurse explained that this meant he had some plugging and put him on a bile salt solution. The name of the med escapes me right now. What I took from the conversation is that he will pretty much always be on it. Is anyone familiar with this condition that can fill me in a little? It's hard to talk on the phone about this because she totally caught me off guard and now questions are popping into my head. He goes back on the 2nd for an ultrasound on his tummy and for more labs. What exactly are they looking for in the ultrasound? Any input is appreciated.

Shelly

 

[anonymous]

My 2 yo son had labs done last week. He cultured his usual bacteria and was put on an antibiotic. From his blood it showed that his liver levels were elevated. The nurse explained that this meant he had some plugging and put him on a bile salt solution. The name of the med escapes me right now. What I took from the conversation is that he will pretty much always be on it. Is anyone familiar with this condition that can fill me in a little? It's hard to talk on the phone about this because she totally caught me off guard and now questions are popping into my head. He goes back on the 2nd for an ultrasound on his tummy and for more labs. What exactly are they looking for in the ultrasound? Any input is appreciated.

Shelly

 

[anonymous]

They probably prescribed "actigol"...which speeds the bile through the liver. You can "enhance" the liver function with milk thistle...is great for the liver. I AM NOT A DOCTOR, so please refer to a homeopathic/naturpathic doctor...as dosages vary with age. Also, look into Vitamin E and Lecithin as a daily regimen. Water with lemon helps break down fat as well. I understand what you are feeling...hang in there. I ENCOURAGE you to talk to a counselor...my wfie and I held off, but relented...we finally saw someone and it made the world of difference in our lives.

 

[anonymous]

They probably prescribed "actigol"...which speeds the bile through the liver. You can "enhance" the liver function with milk thistle...is great for the liver. I AM NOT A DOCTOR, so please refer to a homeopathic/naturpathic doctor...as dosages vary with age. Also, look into Vitamin E and Lecithin as a daily regimen. Water with lemon helps break down fat as well. I understand what you are feeling...hang in there. I ENCOURAGE you to talk to a counselor...my wfie and I held off, but relented...we finally saw someone and it made the world of difference in our lives.

 

[midwestmama]

Actigol is what they prescribed. Is this not a common condition? The CF nurse sounded like this was normal for CFers, but it scares me a little. I haven't really seen anyone mention this. I seem to learn more here than I do on the spot in the clinic, so I wasn't sure how common it is. Any input is appreciated.

 

[midwestmama]

Actigol is what they prescribed. Is this not a common condition? The CF nurse sounded like this was normal for CFers, but it scares me a little. I haven't really seen anyone mention this. I seem to learn more here than I do on the spot in the clinic, so I wasn't sure how common it is. Any input is appreciated.

 

[anonymous]

Liver problems do occur in those with cf. I have read that "liver disease" affects 1/100 of those with cf. We were told my son has liver disease when he was three months old. His liver was enlarged and his liver enzymes were elevated. Actigal has helped his enzymes numbers lower back to normal, but his liver is still a little bit enlarged. All of this is alarming to me. I really do not have a good understanding of liver disease. There is another child at our church with cf. He is ten and he had a liver transplant a year ago. He is doing well today. So I was obviously alarmed when we were told that my son has liver issues as well. The only thing I know how to do is to trust the Lord and the perfect plans he has for my children.

Jack has not had an ultrasound. I think (not sure however) that an ultrasound looks for any liver damage and how well the liver is working. I know that a liver biopsy is the only real way that doctors can tell how well the liver is functioning.
Sharon, mom to Sophia, 3 and Jack, 14 months both with cf

 

[anonymous]

Liver problems do occur in those with cf. I have read that "liver disease" affects 1/100 of those with cf. We were told my son has liver disease when he was three months old. His liver was enlarged and his liver enzymes were elevated. Actigal has helped his enzymes numbers lower back to normal, but his liver is still a little bit enlarged. All of this is alarming to me. I really do not have a good understanding of liver disease. There is another child at our church with cf. He is ten and he had a liver transplant a year ago. He is doing well today. So I was obviously alarmed when we were told that my son has liver issues as well. The only thing I know how to do is to trust the Lord and the perfect plans he has for my children.

Jack has not had an ultrasound. I think (not sure however) that an ultrasound looks for any liver damage and how well the liver is working. I know that a liver biopsy is the only real way that doctors can tell how well the liver is functioning.
Sharon, mom to Sophia, 3 and Jack, 14 months both with cf

 

[anonymous]

Please see a naturpathic/homeopathic doctor in conjunction with your regular doctors. They may be able to give the liver the nutrition it needs to function properly....milk thistle is incredibly important....the goal is to keep the enzyme levels down....to push through the bile that gets caught up in there. There are ways to do this along with the actigol.

 

[anonymous]

Please see a naturpathic/homeopathic doctor in conjunction with your regular doctors. They may be able to give the liver the nutrition it needs to function properly....milk thistle is incredibly important....the goal is to keep the enzyme levels down....to push through the bile that gets caught up in there. There are ways to do this along with the actigol.

 

[midwestmama]

Thank you Sharon. I've had a couple of days to let it sink in. There's so much to learn about this disease. I thought I had brought myself up to speed on it all, but there always seems to be more.

 

[midwestmama]

Thank you Sharon. I've had a couple of days to let it sink in. There's so much to learn about this disease. I thought I had brought myself up to speed on it all, but there always seems to be more.

 

[anonymous]

Shelley-
I just re-read my post to you. I just want to emphasis that it is RARE that a child with cf that has elevated liver enzymes gets to the point that he/she needs a liver transplant. Most of the time it is just something controlled with Actigal.

My children's GI doctor is giving a speech on cf liver disease this coming weekend at our local Houston CF education day. I will let you know if I learn anything. I am really interested in what she has to say. I have tried to get more info about cf liver disease from her in our appointments and I haven't been very successful. She just says that it is something that needs to be monitored.

Sharon, mom to Sophia, 3 and Jack, 14 months both with cf

 

[anonymous]

Shelley-
I just re-read my post to you. I just want to emphasis that it is RARE that a child with cf that has elevated liver enzymes gets to the point that he/she needs a liver transplant. Most of the time it is just something controlled with Actigal.

My children's GI doctor is giving a speech on cf liver disease this coming weekend at our local Houston CF education day. I will let you know if I learn anything. I am really interested in what she has to say. I have tried to get more info about cf liver disease from her in our appointments and I haven't been very successful. She just says that it is something that needs to be monitored.

Sharon, mom to Sophia, 3 and Jack, 14 months both with cf

 

[anonymous]

Sharon, thank you for the updates and information. I'd also appreciate the information you get from the speech. My daughter has slightly elevated liver enzymes...she is on actigol. I also put her on the milk thistle.

 

[midwestmama]

I called the CF coordinator yesterday to try and get more information. Though she answered them readily, it still sounds vague to me. Maybe after the ultrasound we will have more specific information about his status. I would appreciate your comments after the speech. I can't seem to find out alot about it other than it can occur.

I also asked about the milk thistle and didn't get much of a response from that other than I need to talk to the Drs before I put him on anything alternative, which is what I expected to hear.

Thanks!
Shelly

 

[anonymous]

To the mom who put your child on milk thistle-
where did you purchase it and how did you figure out how much to give your child???

I had asked the GI doctor about it and I didn't get a lot of support. She didn't say no, just the usual bla...bla.. about
giving over the counter meds.

Thanks,
Sharon, mom to Sophia, 3 and Jack, 14 months both with cf

 

[anonymous]

Well, I highly recommend you look for a naturepathic/homepathic doctor. Some are covered by insurance now. Make an appointment...they will let you know a proper dosage or IF that is the natural medicine they would recommend. I just won't limit my daughter's treatment to just "western" medicine....I believe in eastern medicine as well. I also recommend searching the internet on milk thistle and the liver...to educate yourself as well. People with cirrhosis of the liver or even alcholics use milk thistle to keep their liver properly functioning....lecithin helps break down the bile as well....keep those in mind, but see the doctor. I support your efforts and please get out there and learn about naturepathic medicine and homeopathic medicine. We are from CT and we use a Doctor here in Enfield.

 

[NoDayButToday]

I've seen Milk Thistle for sale at our local Whole Foods supermarket (for those who don't have Whole Foods in their area, Whole Foods is an organic/health food supermarket with an extensive herbal/natural supplements section). I'd imagine any store like this would also carry it. Of course, if you can't find it locally you could order online. Good luck.

 

[anonymous]

I had elevated liver enzymes and was told that I was one of those cfers with liver issues when I was about ten. I was on actigol for a number of years. Really the only change it made for me was one more pill and an extra blood draw every now and then. I've been off actigol for about seven years now, and although my liver is enlarged I haven't had any problems. I get my liver functions checked once a year, and am even able to drink alcohol. It's just something that needs to be monitered.
In the ultrasound they are looking for blockage and scarring in the liver ducts and tissue. It is so they have an actual picture of how his liver is and so they can compare it in the future. The ducts of the liver are lined with bile and in cfers it is thick and sticky as the mucus is in the lungs. Occasionally a plug can form and can eventually scar. I believe it is a form of sirrosis, but don't let that word scare you.
Let us know how things go.
Debbie
23 w/ CF