Indy - I'm very sorry for what you're going though but I'm glad it seems like you're headed down the right path.

I read your story above about the guy who's son was misdiagnosed and am going through something similar. My 6 year old son (now 7) was diagnosed with Benign Rollandic Epilepsy in July. He was put on medication which worked at first but then, he started having more seizures. His neurologist increased his dosage and he started having cognitive issues (forgetting his uncle's name, not remembering what "sneakers" are, not able to pronounce words that he never had trouble with, performing poorly in school etc). When I brought this up to the Dr, she simply said that it was the medicine and changed his medication. Unfortunately the problems continued and got worst! To be honest, I was really uneasy as she did not really want to address my concerns and seemed to be blaming everything on the meds.

Long story short, I went to a new neurologist yesterday and she was surprised that my old doctor didn't perform certain tests to completely rule out other things. She suspects that the diagnosis is not 100% correct. This new doctor is the head of the department in a major medical facility and has done a lot of clinical research on epilepsy as it relates to behavioral and cognitive issues. We are scheduled for more intensive testing in the next couple of weeks and although I'm worried, I am relieved that someone wants to get to the bottom of things and find the right treatment for my son.

It just goes to show that you have to trust your gut when it comes to your health and keep looking until you find a doctor who listens to your concerns and who you trust. Getting a second opinion is worth it, and can be life saving in certain instances. Even if your original doctor is spot on, at least you get the peace of mind and reassurance when their diagnosis and treatment is re-affirmed by another expert in the field.