So we got the results from Kaitlyn's MRI, everything appeared to be normal. So all of the tests are coming back normal which is good but in a way upsetting. We just want some answers and need to know what we are dealing with. I am loosing control of the situation and I am trying as hard as I can to keep ahold of it. They can't even tell me what kind of seizures she is having. We deserve to atleast know that if she is supposed to be on this medicine for the next 2 years atleast.

I called the nurse yesterday and demanded more information. I told her I was upset and frustrated with the lack of information they gave us. I asked them if there was an E specialist that I need to see or something to get the information that I need and she told me that Omaha doesn't have one. I asked about support groups for parents and children with E and I was told there wasn't one of those also. I told her I NEEDED to know what kind of seizures she was having, I understand that I might never know why but I deserve to know what kind she is having so I can give her the best possible care. The nurse didn't even know names of seizure types. I was appalled. She said she would send me brochure in the mail. That's all they have to offer. So much for excellent care at a Childrens Hospital. I'm getting desperate.

I am trying to make plans to travel to a doctor to get the answers we need. So my choices are Chicago, Florida or Texas. I need something, Kaitlyn deserves every possible option be available. It just doesn't seem acceptable that they can't even tell me what kind she's having. They aren't offering any more testing, we are just supposed to wait a year and repeat the EEG then. I'm upset. I'm at the end of my rope.

I just found an E Specialist in my state, I'm hoping this is something that will help us. Everyone thinks I'm crazy for making a big deal about it. No one understands. I'm not just taking this for what they say, I want a second opinion. I want to know more. I will drive how ever far I have to, to get her the care she needs. My own mother, her grandmother thinks I'm over reacting. I'm so upset. They said I was over reacting the first time she had a seizure. My mother said that I worry too much, that I always assume the worst and to leave the doctors alone. Hmph, I guess. I'm tired of being doubted. I'm her mother, I know right? When everyone doubts what I'm doing I start to doubt, but I know that she needs to be there for her. I just won't include anyone in helping to get her the care that she needs. Our family is turning against us, no one seems to understand what its like. No one cares. I'm getting discouraged.