Support/Guidance for my teen daughter.
Hello, we were just released from a second multiple day stay in the hospital. The first was in July at a regular hospital but one with a pediatric cardiology unit. This last one was for six days at a children’s hospital. My daughter has experienced multiple episodes of what they are now calling PNES after doing something physical. She is always running, dancing, gardening, etc before an episode. They have done multiple multiple eeg’s. She does not have seizures. What landed her in the hospital in July was a Long QT Rhythm reading on an ekg. She has since had numerous long QT Rhythm’s and multiple borderline rhythms. They are doing genetic testing for long QT syndrome. Otherwise her heart looks good. Anyway my question is- her episodes are only precipitated by something physical not anxiety or stress. They last four hours and hours. Is this typical for PNES. The doctors were like we don’t know for sure it’s this but we’ve ruled out a lot of other things. My daughter is adopted and has a significant trauma history so I kind of feel like they are dumping us in that bucket. Wanted to get your thoughts. Thanks!