I hate going to each new doctor …whether for epilepsy or some other reason … and having to write down from memory all of our meds and the doses, all the tests done, diagnoses, side effects of meds that you tried, hospitalizations … ALL of it. As time progresses, it gets harder and harder to remember the little details.
I started a file on the computer, noting all of these things, and more. I’d keep it updated, and printed out a copy before we left for any medical appointment. For hospitalizations, I took several copies… for admitting, nurses, surgeons, techs… anyone who provided care for my epileptic son.
As a side note, I have a severe allergy to a chemical found in most soaps, lotions, tape, gels… in almost everything in a hospital. When I went in for my breast cancer surgeries, I even wrote on my arm in permanent marker “see medical sheet for allergies”.
I’m suggesting that you too make a list for you and the other members of your family who have an on-going health crisis. Include the following information in as much detail as possible (my son’s med info sheet is over 3 pages long!!):
-your full name/what you prefer to be called
-anything you are allergic to & what your reaction is
-name & contact info of all your doctors
-name, address & phone number for current pharmacy
-list of ALL current meds, doses, frequencies
-health history (you AND immediate family)
-info about first seizure (when, where, what, how treated, etc)
-timeline for seizures
-meds tried for seizures, why stopped, side effects
-what else tried for your seizures
-surgeries (not just for seizures)
-hospitalizations for any reason
Give as much information as possible that might be relevant to doctors understanding you and your health.
REMINDER: Don’t put social security numbers or birthdates on the sheet. While most people in medical facilities are honest, why make it easy for the non-honest people to steal your identity?
STAY STRONG. Vikki
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