Junior Member
|
|
Join Date: Jul 2011
Posts: 16
|
|
Junior Member
Join Date: Jul 2011
Posts: 16
|
Feeling pushed aside by doctor
We have done all the tests (EEG, MRI, blood work) and waiting a month to see the neurologist. Meantime, we have been told my daughter is having seizures and they started her on meds right away. We put togeather a question list. We didn't want to forget anything. The day arrives to finally get some of our questions answered. We go in and find that the doctor is very ill prepared. He didn't know that she had already had an MRI even though he had it in the chart. He told us he wasn't confident about the diagnosis of seizures and wanted to know who gave us that information. We told him that it was HIS OFFICE that gave that info along with starting her on meds right away. He told us to call him back (not him call us) in a week so he could read the EEG himself (though he has already had the EEG for a month). We left the office feeling more confused than when we went in. Our sanity was kind of teetering on this appt and its answers. I called back a few days later and left a message saying that we felt very left in the dark and would appreciate the dr looking at the EEG and giving us a call. Later that day I did recieve a call, but from his nurse. She gave us the diagnosis of Benign Rolandic Epilepsy and wasn't sure what the facial spasms were, possibly hemifacial spasms but wasn't sure. I was shocked to find out she was having seizures at night since I wasn't aware of any. She told me, "Well obviously you didn't, she does sleep in another room, right?" She then asked what I thought it was. I told her that I was prepared for her to say Simple Partial Seizures since that seemed to fit her symptoms. She proceeded to laugh at me. I'm sure thinking I'm a crazy mother for looking things up online. (Well I wouldn't of had to do that if someone had been prepared and gave us answers!!) Anyway, she made an appt 3 months out and hung up. I was left shell shocked and full of questions with no one to ask. I cant wait 3 months to ask questions about something new and frankly a little scary. I called back and asked for another appt so I could get our questions answered. I didn't want to see the same dr because I thought he has been very passive thus far. They told me it would be a month before I could get in with a new dr. If I wanted to see the old dr, I would only have to wait 3 weeks. How can that be? You diagnose my daughter (over the phone, by a nurse) and then just expect us to hold our questions on the health of our 5 yr old. We called yesterday and asked for at least a phone call to discuss our questions. We haven't heard back from them yet. I don't think I am being dramatic. I realize this condition is NOT life threatening but it isn't strep throat either. Are we out of line to expect better care? We just aren't sure what to do. Sorry to ramble but I was hoping that someone may be able to point us in the right direction or give us some advise on where to go from here. Thank you for reading my very drawn out comments. Any advise would be helpful.
|