I am almost 3 years old and diagnosed with Systemic Mastocytosis and Hemihypertrophy. I have it in my gi tract, skin, and they believe my lympnodes, and kidney's and possibly my liver and my brain is reacting with seizures mow. Because of this I am triggered too have allergic type reactions including anaphalaxes to multiple things including SUNLIGHT, HEAT, COLD, STRESS, FRICTION, VIRUSES, INFECTIONS, CUTS, BUG BITES and anything at anytime can turn to a problem even a simple scent. My life is much different then most peoples and it is a fight to keep running everyday.f It is very rare also a orphan disease. There is no cure and no real treatment only symptom treatment and removal or tumors caused by the 2 diseases if they occure. If you would like to know more I would love to tell you.
Monday, January 6, 2014 7:55 AM
Jack has a virus, he is very tired and lathargic, yet no fever, rash, swelling, diarhea, no other problems...a bit pale though. Yet doctors are telling me now they dont believe he has systemic mastocytosis they believe its cutanious.... GREAT NEWS! Yet they can not explain the excess mast cells in his duodenum with expressed CD25 on it. But he doesnt meet all the criteria. Now his masto is doing so much better they believe he is either in what i call remission or he may be growing out of it. we just have to keep a good watch on it. He is even eating oranges now and playing outside like a normal child.