Monday, May 16, 2011

Why?

So this is the latest update on Allorah. I received a call on Monday from Chicago about her lab results from last month. They said we needed to follow up with her endocrinologist in Albuquerque for elevated triglycerides, elevated glucose, insulin and hemoglobin A1C. they were going to send the lab results to Dr. Kaufman and that Dr. Pachman was going to send her a letter as well. So I called and scheduled an appt to see Dr. Kaufman next week on the 17th. The following morning I get a call from Dr. Kaufman, her endocrinologist, telling me that she received the labs and letter from Dr. Pachman, she immediately called her to discuss what she saw. She told me that she now knows why Allorah's triglycerides have been high and it is making sense. She informed me that she has now acquired generalized lipodystrophy AKA Lawrence Syndrome and its very serious and extremely rare. She took the liberty of contacting Dr. Garg at UT Southwestern in Dallas and we need to take Allorah there. He is the leading physician that sees lipodystrophy cases and devotes his practice to this. I have attached a website explaining this diagnosis.


http://www8.utsouthwestern.edu/utsw/cda/dept105805/files/106988.html

She informed me that it is very rare and she knows about this disease enough to know that she needs to see the best. So I told her to please get it set up and we will go. Dr. Garg called me later that day and we talked and he informed me that he wants to get her in. His nurse called me yesterday and told me that we will need to be there for a minimum of 4 days. So off to Dallas we will be headed. We are looking at the first part of June and she is now working on getting her a room for there in the research unit and getting all her tests, scans and appointments scheduled. She is looking at insulin injections, as well as possibly being a candidate for a treatment protocol of a medication that Dr. Garg has initiated and only he can administer. So we will head to Albuquerque on Tuesday to see Dr. Kaufman and to meet with the diabetes educator and see what treatment she wants to start there. So that is where we are at now. We are praying that this hurdle is only a speed bump in her recovery and that once this gets controlled that we can get a better grip on the JDM. Please send her your prayers and I will keep you all informed.

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