Precerpt from Raising God's Rainbow Makers: Doah's Blood Pressure
When Doah got to be a buig boy, as in his 30s (an achievement for CHARGE Syndrome; children were still struggling to make it past age 5 at that time), his blood pressure went kaflooey. That is the only way to describe it. Most, it shot up at unexpected times, way up. Sometimes 200+/100+. At least, those were the figures that would prompt me to chase him into the car and drive him off to the local ER. These figures, mind you, were occurring in spite of two daily doses of clonidine and an additional morning does of losartan. Doah always knows when something is wrong. He lies on the couch and says he is dizzy. Or, if he is in the car, he says he is dizzy and wants to stop and throw up. He knows. When I take his BP, he is right -- it is always very elevated at those times. Getting it under control was not easy, even in the ER. One time, the doctor gave him 5 times the normal dosage of clonidine and after eight hours sent us home with still elevated pressure and told me to give ...