TestifyToLove
New member
As just1more mentioned, our son's story is very similiar to jacksmom. Our son did have meconium illeus. However, the original liver damage was NOT from meconium illeus nor from the CF per se. The original biopsy done at 2.5 months stated the liver damage was from the TPN, which is known to cause liver damage.
Ds has had at least 2 more periods of TPN since that original time period. And fostermom refused to give him Actigall. She said it made his diarrhea issues worse and wouldn't give it to him at all...to the point his previous doctors stopped trying.
Ds does already have portal hypertension. Latest u/s shows he has some esophageal varices, though not a lot yet. He's having significant trouble metabolizing his vitamins, most significantly his vitamin K. But, his liver enzymes, afaik are not rising significantly *at this point in time*. Officially his diagnosis currently is Hepatosplenomegaly, and latest u/s says his spleen is 16cm, considered unsafe for an adult, forget about a child.
I have not verified the validity of the statistics given to us. But, we were told that 12% of CFers have liver complications. The doctor said for some unknown reason, 50% of Hispanics have liver complications. And, ds is Hispanic.
Obviously, at some point, we will face a liver transplant, and likely a spleen removal. But, as Dh stated, thus far no one has stated *when* we can expect this, only that it is in the future.
The Heptalogist has been very insistent that ds see a GI for his malabsorption issues before he will see him again, despite assurances from the CF doctors that the malabsorption is basically as good as its going to get for ds. His GI appointment is 8/21 and his Heptalogy appointment is 8/23. My hope is to have more information about his future and the condition of his liver at that point.
Ds has had at least 2 more periods of TPN since that original time period. And fostermom refused to give him Actigall. She said it made his diarrhea issues worse and wouldn't give it to him at all...to the point his previous doctors stopped trying.
Ds does already have portal hypertension. Latest u/s shows he has some esophageal varices, though not a lot yet. He's having significant trouble metabolizing his vitamins, most significantly his vitamin K. But, his liver enzymes, afaik are not rising significantly *at this point in time*. Officially his diagnosis currently is Hepatosplenomegaly, and latest u/s says his spleen is 16cm, considered unsafe for an adult, forget about a child.
I have not verified the validity of the statistics given to us. But, we were told that 12% of CFers have liver complications. The doctor said for some unknown reason, 50% of Hispanics have liver complications. And, ds is Hispanic.
Obviously, at some point, we will face a liver transplant, and likely a spleen removal. But, as Dh stated, thus far no one has stated *when* we can expect this, only that it is in the future.
The Heptalogist has been very insistent that ds see a GI for his malabsorption issues before he will see him again, despite assurances from the CF doctors that the malabsorption is basically as good as its going to get for ds. His GI appointment is 8/21 and his Heptalogy appointment is 8/23. My hope is to have more information about his future and the condition of his liver at that point.