frustrated!

I am so glad we are switching neurologists. I am so frustrated with the care Ava is getting and the lack of communication I am getting with her current one. I don't know if I am overly sensitive or if she truly is giving substandard care. I feel that the steps the neurologist has taken in diagnosing Ava has been the basic route care doing no more than standard. I fear if Ava (and she obviously does if they haven't found what is wrong yet) has a syndrome or disorder that does not fit neatly into their check boxes then they will never find the answer. We first saw the neurologist at 13 months where we had an eeg and blood and urine work up. Then at 14 months a MRI (they wanted us to wait six months! And only through fighting everyday for two weeks did we get earlier.) At 15 months the ketogenic diet (again only at our insistance and refusing to take no as an answer...they wanted us to wait at least a year) a eeg, genetic workup including a microarray and a check up three months later with more blood work with another eeg. I guess it sounds like a lot when put together but for a mother who has not found the answer or even come close then it is not enough. The last appointment the neuro said that she was at the end of her diagnostic abilities. She also said maybe when Ava was 20 they might find an answer. Are you freaking kidding me?! I can't believe she said that. She has been looking for seven months. That is not long enough to give up. She suggested that we try a new neurologist. We said yes but wait until her abilities were exhausted (she is still to check the cerebral spinal fluid (in a couple weeks) and do a muscle biopsy. My question is why not check all of these things one after another? Why wait so long between everything so that more and more time passes. The funny thing is that they only check for three things in the spine. One of which the treatment for it was the ketogenic diet. That is why they didn't want Ava to have it. I asked if she could had folate deficiency and brought in an article that sounded a bit like her. So for her credit she did add it. But what about all the other ones I am not aware of that should be tested. Should a parent have to constantly fight to achieve adequate care for their child? Where is Ava's super hero that will work tirelessly to find the truth? We hope this next neurologist will be more interested in Ava and we have a feeling that he will be. Just needed to rant.