Going to ER at NYU. Never sleeps. Abx. doing nothing.

[trintiybella]

I am going to go to the ER tomorrow and hope that I can speak with Dr. N. Any advice is welcome. This is ridiculous!!!

[T_Anna]

I would stress the seizures and need for monitoring.

 

T.Anna

[rowingmom]

Yes. Try to find any reports etc written by Dr N. If your daughter has similar symptoms to others he has helped be sure to mention them.

[Hopeny]

Based on the complexity of your daughters symptoms it seems like a conventional medical workup and sleep study would be worthwhile. Since you have the other treatment avenues covered you can see if it is beneficial. Good luck

[PowPow]

The er is most likely going to ask "what is your emergency?"

I know her situation sucks. However, the er may just ending up sending you down the psych route and you, may lose control of her care.

What is her diagnosis?

Does she literally never sleep?

What else does she suffer from?

It seems like you need to find one really great doc and spend some time teasing out the issues. In person.

 

I do not mean to sound harsh, but I think you may be wasting your time and adding to your frustration.

[tpotter]

I don't want to sound negative, but I have heard that Dr. N is not taking new patients. I don't think he covers the ER anyway. I agree with PowPow and T.Anna...find a single neurologist who can look into the seizures, and I would also ask about a sleep study. Once they have looked at the seizures part, I would see where you can get with encephalitis, but once again, I would not mention PANDAS/PANS. They do "get" seizures and sleep disorders (maybe the seizures are keeping her from sleeping, or maybe she has sleep apnea or something.)