January 17, 2012 By 1 Comment
The easy answer seems to be, “a doctor”, right? But what if it’s not? Through Hollywood TV and movies, doctors are put in the light to be these sort of magical heroes that come in and save the day, curing the patients of the most impossible disease.
In real life, though, why does it seem that it is the parents who are doing thediagnosing? It is also the parent that is often looked at and treated like they are incompetent of understanding human diseases and disorders. After all, did we graduate from medical school?
I guess you need a degree to diagnose, rather than simply using common sense.
Because of Kate, we are seeing regularly:
And all these visits later, thousands of dollars spent in tests, procedures, and visits, and do you know what we’re told? “We just have to wait.”
Yes, you got that right. We just have to wait. It was the doctors that put the pressure on us that something was wrong and subjected Kate to punctures and prodding, and for what? To wait?
Also, every time I discuss FPIES with the doctors they are very insistent that because FPIES is so “rare” that they doubt that she has FPIES. They also seem to think that they can TEST for FPIES. Any FPIES family knows that there is no test for FPIES. The diagnosis is symptom based. Doctors are so insistent on finding answers through blood work and tests, that they refuse to look outside the box and simply ask the patient questions and listen.
My daughter has FPIES. There is no “if”, “ands” or “buts”. I know this, as does my husband. FPIES is not as rare as doctors are lead to believe and they really need to step up and put more research and education into the subject, themselves, before speaking and acting like they understand FPIES. It is apparent, through multiple visits, that they all seriously lack in FPIES education and understanding.