Just back from the doctor. Our girl was AWESOME!!! No hiding it, no happy "I'm fine", very much like a kid with a painful problem that is pretty bad. He really SAW what was going on.
He even commented on how much worse it has gotten (considering she was working hard to suppress almost all of it last time!) and how we need to figure out how to stop this. YES!
The rest? Some good, some bad. Better than I really expected.
Jessie is unhappy with him because she stayed on the exam table and the chairs were on the opposite side of the room. Jessie could have taken the chair next to me, but husband was with us. Even then she could have. BUT husband would then have taken the doctor's stool and tried to hack into his computer.
NOT a good thing.
He DID ask her a number of questions. But he asked me more. He also had a LOT of mis-information. We did a 20 minute video EEG. He kept saying it was an extended EEG.
Then he thought we did 2 EEGs and he needed to order an MRI of her brain.
FINALLY got that organized. It was a mess.
He cannot see a neurological reason for this. Mentioned a psychiatric condition called "conversion disorder" where a trauma happens and the body handles it with strange physical symptoms. I think that he wants to give a psychiatric reason for things because he is also certified as a child psychiatrist.
He said that since it started in early July, she would have to have had the trauma in May or June. No trauma we know of. But if we had gone in with-o having a psychiatric assessment scheduled he would have gotten stuck on that. whatever.
He is switching her from ativan (lorazepam) 2 times a day no less than 4 hours between doses to klonopin .5mg twice a day. It should last longer and do more to help stop the shaking.
He admits he has no idea what is going on. Has never seen this. Ever. At least he admits it.
We are getting a referral to pain mgmt - the Children's hospital he is affiliated with has a pediatrician pain clinic!!! I am so thankful. I hate that she hurts and I hate that none of the docs seems to really want to treat the pain.
He may order and extended EEG was very upset with the EEG place because the written orders for her EEG were for an extended one. Not mad at me though.
We are also changing Jess from Keppra to lamictal. We have a starter pack with the melting tabs to begin with. Then he will rx the generic form. We will not step down with the keppra until the lamictal is near the level he wants.
He was suprised when we blew off the blood work as no big deal. Even Jessie said "That's no problem."
Anyway, that is where we stand now.
Jess doesn't like that he had his back to her much of the time. MUCH of that time he was ordering rx's, making notes, and looking up some info. So he was looking near me, but not talking.
We see thetdoc on the 5th and the endocrin doctor on the 18th. Not sure how many other appts we will have before then.
Thank you all so much. I could feel you there supporting me when the doctor would give me that skeptical look that says "hysterical mommy blowing things up so a zit becomes huge and gangrenous and needs amputation of the nose".
When I continued to ask questions and want full answers he finally settled down. Nyah nyah nyah!!! See if one piddly new doctor can hold out against the Power of the Board!!
That's great to hear he his taking this seriously! Hope the klonopin works for her -- FWIW, our neuro rx'd it for difficult child 2's movement disorder, too. But it just zonked him too much so we stopped it and now he's mostly remitted so it's not a big issue anymore. 
