Wednesday, June 1, 2011
Wednesday Update
All is well in Dallas. Allorah is doing good and is an ideal patient. She had her insulin tolerance test this morning and tolerated the insulin well with no complications. She also had more fasting labs taken this morning and another IV placed. This afternoon she had a specialized liver MRI to check how much damage is in there and then an MRI of her entire body to see fat loss. The whole session took almost 2 hours! So now we wait for results and tomorrow we have a consult with the docs to go over her MRI films and labs and then a DEXA bone density scan. We will be checking out on Friday and heading to Six Flags on Saturday. That's what the girls are looking forward too.
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Shannon, I am sure you have explained this already - but, what is the story behind going to Dallas? I know Allorah has had many complications with JDM, but what specialist are you seeing and who sent her there? It is hard to keep up with everyone and their personal stories and not get the information mixed up. I am sure you are tired of repeating your time line also :) so when ever you have a minute. I worry about Kory as July marks the 6 year of JDM for her and it seems all we do is up medications....Praying for you to get some answers. Hugs
ReplyDeleteHi Sissy, we are home and I just saw your post. She was diagnosed with Acquired Generalized Lipodystrophy by her endocrinologist in Albuquerque, she referred us to Dr. Garg in Dallas who is the best in treating this. He is the leading endrcrinologist who specializes in these type of metabolic syndromes and does treatment with Leptin. He evaluated her to see if she was a candidate for this treatment. She does have significant fat loss and elevated triglycerides due to a fatty enlarged liver and is insulin resistant diabetic, but due to her big dose of Prednisone that she is on and all the other aggressive Meds, he doesn't want to put her on the Leptin. He thinks that if Dr. p will lower her dose of Prednisone and we do strict diet control, that her numbers should lower, if not we may have to revisit the Leptin idea. Which I am praying we won't need to. He wants to keep in close contact with us via email so that's good. He was an amazing doctor and his staff and other docs on his team were just as great. I was impressed.
ReplyDeleteIt seems we are feeling the same about these many years that go by and more Meds are added and doses are increased. Lola is going on ten and a half years and never been close to remission and never been off prednisone! Grrrrrrrrrrr!