Jess has had a very long almost 2 years with the shaking, vertigo, hideous muscle spasms out of nowhere (you can visibly SEE the muscles in her arms, legs, torso, neck go from normal to rock hard in under 30 seconds when it hits - and there is NO pattern to diet, sleep, medications, anything) and now a new symptoms. She just falls over. Standing, washing hands at the sink, not the falls while walking that have been here for a few years that supposedly are not a symptom of absence epilepsy or any other kind but stopped when she was on lamictal - which to me says that it must somehow be related to seizures. Of course, I am just a mom, not a doctor so no one listens to me. It is dang scary to see your kid talking to you, normal, standing, and suddenly she is just down. Or to hear the crash as she falls. She is CONSCIOUS when this happens, does not always even feel dizzy or feel vertigo or think she is unsteady. WTF'ing H is wrong with the docs that NO ONE will care? The neuro we were seeing says he doesn't care to see her again, no other neuro at his children's hospital will see her. psychiatrist says this is NOT conversion or psychiatric - that she is amazingly well adjusted given all of this and the most he sees is a bit of perfectly normal depression over having the health problems. even the past stuff with Wiz is not a factor according to the psychiatrist. The neuro won't see her anyway. the family doctor has been trying for a MONTH to get another neuro to see her - no luck. I got a letter the other day saying she had an EEG scheduled - on AUGUST 2. I called, yup, it was August and now they want to talk to a doctor before they reschedule even though the referral and orders are good for 90 days. I am so angry and scared and furious and all sorts of other emotions right now. I just can't figure out WHY no one gives a dang but the family and friends. We even offered to pay CASH - ANY AMOUNT they wanted - both sets of grandparents kicking in whatever is needed and the docs just do NOT CARE!!!!!! I have called every pediatrician neuro in our state. I am now working through the adult neuros as she is 16 and maybe one of them would see her. I am used to fighting for my kids. I fought HARD for what Wiz needed and got it apparently, I know I got a LOT of success in getting the accommodations he needed or I provided them by homeschooling when that was needed. I know how to keep a paper trail, list of contacts, ask for help, etc.... NONE OF IT IS WORKING. I have spent a couple of weeks doing this now and am just so scared. This is NOT the life I want my child to have!!! What do we have to do to get help? She cannot produce symptoms on command, meaning that by the time an ambulance got here she would seem normal. The ER says there is no point going there because if they cannot see her in a crisis they won't do anything - and we cannot wait in the waiting room for a few days or a week until she has a symptom that is visible. So far the falls are not daily, but still too often. The ERs at the two children's hosps won't do anything either - we tried that route. Ironically, now that we have medicaid for the kids we have access to MORE specialists than we did with private insurance. All that means though is that more people are saying no to us. Thanks for letting me get this out. My baby should be worrying about boys and clothes and soccer and getting a driver's license - NOT about suddenly falling over. I even called Mayo and Cleveland clinic and they don't offer any real hope - they saw the charts I had sent and said that they are not the 'right place' for her treatment - that they would just do what the other docs did.