We saw the GI in Atlanta this week and thought he was great - very knowledgeable and really educated us about Primary Intestinal Lymphangiectasia. He explained that A does not digest fat properly, so every time she eats foods high in fat she's causing damage to her intestines. We're going to try a diet high in protein/low in fat. It should make a difference, but as you know healing will be slow.
We discussed using low dose prednisone if her gut needs a little boost to start the healing process...we'll see. We also discussed a scope procedure that uses a gas to "burn" her intestines (it doesn't hurt) forcing them to re-heal with the hope that the lymphatic vessels return to their normal size. We'll look at that option next year based on how she is doing with diet alone. We're starting with a very conservative approach because the drugs for PIL are limited and not at all convenient.
He did mention that he feels she has an immune issue separate from the protein loss caused by the PIL. Based on her scopes that always showed minor acute inflammation and changes not commonly found in PIL he thinks there is an immune dysfunction causing issues as well. He said it can be hard to differentiate which process is causing the symptoms. He described it as a very mild version of Crohn's...but not Crohn's....yet.
The lumps on her ribs have doubled in size and become even more painful. He felt that they were inflamed lymph nodes, which makes sense because she has a lymphatic disease. We're trying an Aleve/Prilosec (to prevent bleeding) combo to try to manage the pain and reduce the inflammation. We'll see...they may need to be removed at some point.
I feel relieved that we have a doctor that is willing to educate us and seems to genuinely want A to get better. It definitely gives me hope!
We discussed using low dose prednisone if her gut needs a little boost to start the healing process...we'll see. We also discussed a scope procedure that uses a gas to "burn" her intestines (it doesn't hurt) forcing them to re-heal with the hope that the lymphatic vessels return to their normal size. We'll look at that option next year based on how she is doing with diet alone. We're starting with a very conservative approach because the drugs for PIL are limited and not at all convenient.
He did mention that he feels she has an immune issue separate from the protein loss caused by the PIL. Based on her scopes that always showed minor acute inflammation and changes not commonly found in PIL he thinks there is an immune dysfunction causing issues as well. He said it can be hard to differentiate which process is causing the symptoms. He described it as a very mild version of Crohn's...but not Crohn's....yet.
The lumps on her ribs have doubled in size and become even more painful. He felt that they were inflamed lymph nodes, which makes sense because she has a lymphatic disease. We're trying an Aleve/Prilosec (to prevent bleeding) combo to try to manage the pain and reduce the inflammation. We'll see...they may need to be removed at some point.
I feel relieved that we have a doctor that is willing to educate us and seems to genuinely want A to get better. It definitely gives me hope!
. Poor kiddo. I hope the immunologist has a plan.
