Since my last post much has happened.  All three of my kids are now diagnosed with mastocytosis and hereditary angioedema.  In using old marrow they evaluated me for a c-kit mutation which they didn't find, but they are pretty sure it is not mast cell, but masto....  Boston has been communicating regularly with my doctor and now they need me to go out for testing and they will look at all four of us while they study me.  I am sure a new bmb and repeat labs will occur.  However, I have never traveled in my entire life, let alone flown or been out of state, etc.  Can someone help me so I have the slightest clue where to begin on how you make travel happen, etc.  All the nuts and bolts of this kind of venture?  Apparently there is another patient that NIH proved had mastocytosis without a c-kit mutation and they believe our family is going to set another precedent with this disease.  I have many labs that are normally, but we suspect I am tryptase impaired since my children's labs were done at my request after I suspected they all had it.  Their labs vary with my son's having everything any doctor could wish for to make it a straight up masto diagnosis and my daughters having normal tryptase but extremely elevated prostaglandins and all three of them have abnormal complements, but mine complements are also normal.  We make a very complex case...when my doc was at a medical conference and discussed our case with Dr. Castells they had agreed at that time that it wasn't good to put the kids through bone marrow biopsies at this point and that my doctor was on the right path.  They have been over-seeing our case from afar.  I am guessing I would need to be there several days?