Epilepsy Forum - Dealing With Doctors????

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Q: Dealing With Doctors????

asked by: MickeyFan on February 29th, 2004

Experienced User

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!!!!!

Replies(1)

Bill Levesque

replied on March 16th, 2004

New User

Doctors

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.

Good luck

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