Joined: 28 Jan 2004 Posts: 73 Location: Algonac, Mi.
Thanks: 1
Thanked:0
Dealing With Doctors???? Posted: 02-29-04 08:53am
I just spent the last week in the epilepsy
monitoring unit with my 16 year old
daughter. Not only do I have epilepsy but
the possibility has been there that she
dose also.
This has been going on for 1 1/2 years
now. This hospital stay was planed since
last december. It was a nightmare!!!!!
1) my doc is not there, he's in
california. And I have to deal with 2
docs I don't understand.
2) they don't do the test that I was told
that were going to be done while she was
there.
3) and they are hung up on only one of her
complaints of her eyes twitching...And
nothing else.
So they tell me that she has a "tic".
Has any one ever gone through so much b.S.
Before.
Its not like I want my kid to have this
problem.
Because this is my worse nightmare come
true. All these years I have asked if
this could be hereditary and have never
got the same answer twice and now the
doctors are telling oh yeah it is!!!!
And they are not listening to me or what
her teachers are seeing.
Thanks, one upset and worried mom!!!!!
|
Bill Levesque
New User, Becoming EHEALTHy
Joined: 11 Mar 2004 Posts: 2
Doctors Posted: 03-16-04 10:55am
My daughter was two when she had three
tonic clonic seizures in the course of a
year. We spent hours at the children's
hospital in neurology and had a really
rough time with all of the tests,
particularly the eeg when they try to
induce a seizure by keeping her awake for
24 hours and then subjecting her to strobe
lights.
The doctors weren't willing to listen to
us and our concerns. We did some
research and found a local support group
for people with epilepsy. That really
helped because we learned that everybody
felt the same way about their doctor.
The group loaned us some great books that
we couldn't find anywhere else, most of
which were written by people who had
epilepsy themselves.
We have managed to keep my daughter off of
meds and her seizures have almost gone
away. She just has these little head
nods a few times a day that completley
baffle the doctors and everyone else.
Long story short, see if you can a support
group in your area. It helped us alot.
