What bullshit I'm going through trying to get Jimmy tested for a pheo. Let me back up here....when Jim went to Dr. Altimore at Deborah Heart and Lung and had a 24-hour urine test, Altimore suspected a pheo because of Jim's off the charts adrenaline numbers, so they gave Jim a MIGB scan...that's a type of nuclear scan...but since pheos are usually on the adrenal glands they just scanned Jim up to his neck, and they couldn't find the tumor. At that point Dr. Altimore told Jim to see an endocrinologist because pheos were more in their area of expertise. Jim must have called ten endocrinologists in our health plan. Some said they would call him back and never did. Some couldn't get him in for at least six months because he wasn't a current patient. One even told him that if his MIGB scan showed nothing then they wouldn't see him at all. The only one he could get into was Dr. Horowitz in Cherry Hill....he got an appointment in four weeks...and she turned out to be a very, very good doctor, so in the end we were lucky.
So now I'm on a quest to get Jimmy tested. I called Horowitz's office first. She doesn't see children. Then I found three pediatric endocrinologists listed on Thomas Jefferson's website, so I called one of them. The receptionist hemmed and hawed and then put me on hold. She got on after a little while and said that she spoke to the physician's assistant and maybe I'd need to take Jimmy to a renal specialist, but she'd have the doctor called me back. This was on Friday. Three guesses whether they called me back or not and the first two guesses don't count. Yeah...BINGO. This just demonstrates how doctors don't have a CLUE when it comes to pheos. They never see them because they're very rare. Did you know that 50 percent of pheos are diagnosed at autopsy? That's a damn shame. Jim said that worst case scenario, if we have to take Jimmy up to Boston to get him checked out then we will. I want to try a few more avenues before we resort to that.
I scheduled an appointment this Wednesday with Jimmy's pediatrician. This is a group of four doctors. One of them poo-poo'd me when I asked about getting Jimmy scanned. What I plan to do is to bring my information about pheos with me and DEMAND that they write a script for the 24-hour urine test. I'm not leaving the office without it. Then I want a copy of the results sent to me DIRECTLY so they don't sit in some doctor's file somewhere and I never get a call about them. Jimmy needed a flu shot anyway so the visit won't be a total loss if I don't get my way. But you guys all know how aggressive I can be when I need to be, so I'd lay odds on me winning.
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