Liver Problems - a new development

[rosesixtyfive]

Sam showed fatty infiltration of the liver during his last ultrasound. We have never had to do GI consults before, but we will go January 5th. They said they would be looking for scirosis of the liver. Does anyone have any experience with this? What kind of problems could this indicate? We want to be prepared when we go to the doctor. Not all docs are as encouraging or knowledgable as our CF docs. Don't want an experience where they tell us our kid is just sick and there is nothing we can do.
rosesixtyfive, mother of Sam, 5 years old, ddf508

 

[Aboveallislove]

I can't give anything first hand but looked at cff.org. While this is the standard of care for adults, it provides some great detail on the tests, treatments, etc. for the liver issues. I believe it starts on page 16. http://www.cff.org/UploadedFiles/tr.../AgeSpecificCare/CF-Adult-Care-Chest-2004.pdf

Hopefully it will provide a good backdrop for when you talk to the GI to know what he's saying, what to ask, etc. I'm so sorry. This must be an added worry, not knowing if its an "easy" extra pill or more tests, etc. Hugs and prayers,
Love

 

[Ratatosk]

DS' liver levels were elevated when he was a baby and he was put on Actigall (urisidiol) or bile salts. They think it was caused by being on TPN feeds while in the NICU. hasn't had issues since. We were told that when he gets older (teens) they'll start doing US to check is liver and gall bladder.