Keeping Your Own Records

Here is the voice of experience speaking… loudly…

No matter what the doctor says, keep your own record of it… the date, the doctor, the test results/med change/diagnosis/whatever.

I had to call the Neurologist yesterday to let them know that Amandya is having an allergic reaction to something… we still don’t know what…  I needed to let them know that “we” are now on Prednisone and Benedryl… I mentioned that I was concerned that it might be the Keppra… the nurse called me back and left me voice mail… it can’t be the keppra, the dosage hasn’t changed since she was diagnosed in February.

WHAT?!?!  Hello… EVERY seizure we get the dosage upped.  And we seize about once a month… once every 5 weeks…  I call every seizure… what do you mean the records don’t show that the dosage has EVER been changed… these are her MEDICAL records… I realize that we have our seizures on the weekends and we have to call the on call… but it is YOUR job to let people know what you did when you responded…

I wonder if anyone has ever bothered to put anything in her records.

You have to keep your own records.  You HAVE to keep your own records… it is critical… this is your life, not theirs.  This is your child’s life, your sibling’s life, your spouse’s life… don’t rely on the PROFESSIONALS to be professional.  You have to do it.

How?  However you choose to do it… however you are most comfortable doing it….

I have started keeping more and more in google calendar… that way i can get to it from anywhere… anywhere I can get to an internet connection… everywhere I can get to a cell phone connection (I never thought i would see my cell phone as my lifeline, but now that I have a “smart phone” I know that it means I can get to whatever I need whenever I need it).  It may cost me a fortune if I happen to be in Juarez or Niagra Falls, but I can get there.

I also carry a calendar with me everywhere.  I have started thinking that I may use one of the $.25 composition books that I bought at Walmart tonight to be a customized calendar that will be able to go one for more than one year so I can track better… but I’m not sure… I may just suck it up and keep buying yearly calendars and just carry notes over year to year.

Whatever you do, whatever you are comfortable with, keep a record of every phone call and the result of every phone call and if you can remember who you talked to if it wasn’t you doctor.  Heaven only knows it might mean the difference between life and death later because someone forgot to bother to keep a record on their end of what they did.

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1 Comment (+add yours?)

  1. dee
    Jul 08, 2010 @ 20:24:46

    We have had to do the same thing. It also helps to write when the seizures happened, and what they were doing. At least that is what we do to hopefully get a handle on this someday. I think that the Dr. office is so used to getting these calls from parents that they are numb to the fact that on the other end of the phone line is a parent who is a crazy worried mess about their kid.

    Reply

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