Ever have different Dr's disagree on what AED's you should take?

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
444
Reaction score
0
Points
0
Dr A: Raise the Tegretol XR from 600 mg BID to 700 mg BID

Dr B: Take 1000 mg of Keppra BID and slowly wean myself off of Tegretol XR so I am only taking Keppra.

Dr C: Keep taking 700 mg of Tegretol XR BID as well as 1000 mg of Keppra BID.

I would not be surprised if almost everyone on this forum has gone through this. The bottom line is I don't trust Tegretol to control my seizures anymore and I'm less than convinced that 1000 mg BID of Keppra is enough for a 200 pound person. The problem is my insurance won't pay for Dr B.
 
Last edited:
Similar but entirely different experience:
Dr. A: Oh, I don't see the need for any anti-seizure meds.

Dr. B: You have epilepsy. Take 1000 mg Depakote daily.

Dr. C: Let's get you off the Depakote and onto Lamictal (which eventually become 700 mg daily).

25 months after being diagnosed with epilepsy, I have just started working with Neurologist #6. Or #7 depending on how you count. At this point, I have very little trust in any of them because I wind up paying for both my costs and their **** charges, but I don't have a job or an income. Soon I will tell them what to do with their charges.
 
Déjà vu, fighting docs.
4 years ago, different doctors had different opninions about the further treatment of my son (age 4 by then) who has a refractory epilepsy syndrome (already 9 AED tried by then without succes.)

Dr. A : try Felbatol before trying the ketogenic diet

Dr. B : try the ketogenic diet before trying Felbatol

Dr. C : both, immediately start Felbatol and shortly after that start the ketogenic diet.

We chose for option B. because of succes% of both options and the possible side effects of Felbatol being much more dangerous than the KD.
Lucky choice: the KD worked. He's AED free now.
Following the advice of A or C we probably still would have a (dangerous) AED on board (and perhaps worse...)
 
Last edited:
Doctor X - if all else fails take them all at once :evil2:
 
Doctor X - if all else fails take them all at once :evil2:

:lol: @ Robin


Been in the same boat; but I love
Dutch mom's phrase "Fighting Docs",
that's the best way to describe it.
:agree:

However, when my father was alive
and I two occasions where I had
experienced 'fighting Doctors' where
they couldn't agree on anything.
My father made the recommendations
(for he was a Pharmacist), but they
ignored him, so my dad knew the
guidelines of how to deal with such,
he called upon the Primary Doctor.

What the Primary Doctor does is, he
reviews everything and evaluates the
whole case and if necessary, he/she
will even summon for a second opinion
from a Doctor or a group of Doctors.
And then look for the common grounds
and make the final decision. Sometimes
the Primary Doctor's decision isn't always
what the Specialists wants, but the
Primary Doctor is looking at the patient's
well being and the health as a whole,
generalized perspective. Not just the
specialty area, but also looks at everything,
especially at the long term perspective.

The Primary Doctor is responsible for the
patient's care entirely, after all the Primary
Doctors are the ones who sends patients
off to Specialists in the first place because
their patient had the need for such
Specialist for that specific part/area of
their body.

The Primary Doctor can state and alert the
patient if he/she feels that their Specialist
is not treating them properly, or even following
up and finding too much medication is being
given out, or improper care, and can move
a patient to another Specialist. The Primary
Doctor can do a lot of things, and it helps a
lot when he/she is General Practice and is
not just with years of experience and with a
M.D., but it even helps more so with a D.O.,
and if you do a research on your Primary Care
Doctor on his/her background and reputation
and knowing who he/she is and their affiliation,
powers, associations, etc. You know you're
in very good hands.

For such Primary Care Doctors know "When
to say When", they become alarmed when
they see their patients getting worse instead
of better in a Specialist's care. They will pull
out the brakes. A Primary Doctor stays in tune
with the Specialists. They want reports, they
dislike being left "out in the blue". They want
to know what are you doing with my patients?

A lot of people do not realize this. They just
think that the Primary Care Doctor is someone
you go for a check up once or twice a year,
when it's far from reality. He/She keeps the tabs
on you and your well being. People who care
about their bodies and works with their Primary
Doctors have very strong relationships.

So it doesn't matter if this was a Epileptologist,
Neurologist, Oncologist, Gynecologist, Cardiologist,
Hematologists, or whatever Specialty it might
be. The Primary is still your "Overseer".
 
Back
Top Bottom