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.

Your concerns are valid. This may seem over-simplified, but, find a new Neurologist and keeping trying until you find one that you are confident in with a compassionate and caring staff. Hopefully there is a Pediatric Neurologist that specializes in epilepsy in your area.

For the most part in neurology, there are specialist within the speciality. Many Neuros don't practiced in all areas of neurology. You'll need one that can meet your needs and concerns. It might take visiting a few or going to consultations with your own copies of her test results. It's a pain and can be time consuming but worth it when you have the right medical support.

Wishing you well on your quest.

Hi concerned,


My advice to you is to report this Dr. to the medical conduct board, along with reporting the Dr. to the administrators and tell them what the Dr. and nurse did. After that if you live in the U.S. call the Epilepsy Foundation of America at 1-800-332-1000 and tell them what happened they will help you out by filling you in on this Dr. and refer you to a better Dr. in your area.

My advice to you is to take you child to an Epilepsy Center which are usually at University Hospitals or big hospitals and have your child see an Epileptologist (Dr. specializing in epilepsy) I will let you know that you may have to wait a few months but if you have your family Dr. refer you and have the Family Dr. tell the Epileptologist you need to get in a.s.a.p. they will usually take you in right away. Be sure to get all of your childs medical records and tests from the neuro that you dealt with and send them to a new Epileptologist. After 39 yrs. of epilepsy I got the most help from an Epileptologist and was on the least seizure meds they know much more about epilepsy and how to control the seizures than any of the many neuros I saw over the yrs. Here's wishing you and your family only the best and May God Bless All of You!

Sue

This is such a new, dare I say, adventure for our family and we feel very alone. It is so nice to know there is a community out there who not only understands but cares. Thank you so much for your input. I will start acting on your suggestions right away. Good luck to EVERYONE!!

Hi Concerned,

Don't feel alone believe it or not 2.5 million people have epilepsy just in the U.S. and every yr 188 thousand new cases are starting up. Epilepsy is growing like crazy and some of the reason is because diabetes is increasing and that can cause sz. for some people.
There are a lot of famous people who have epilepsy also. Elton John, Einsteen, Danny Glover, Bethoven, Edgar Allen Poe and many others.

I feel that people who have epilepsy can live a normal everyday life with no problems once they get used to it. It's the other people in the world that need to get educated on epilepsy so they won't be so afraid of a sz.
Here's wishing You Well and May God Bless You!

Sue