If I could give a zero as a rating, I would. My daughter had a PLANNED/SCHEDULED hospitalization for NOCTURNAL seizures that sh... Read More
If I could give a zero as a rating, I would. My daughter had a PLANNED/SCHEDULED hospitalization for NOCTURNAL seizures that she has been experiencing for over a year now (we explained that to the hospital staff). This was the second hospitalization for the same issue at Stanford Lucile Packard (the first was coming through the ER department). After waiting 4 hours to be admitted, we were told that the room my daughter was supposed to stay in was suddenly unavailable, but that they had found another room for her. It turns out that they placed her on the organ transplant ward with a poor child who was on dialysis and suffering greatly. Needless to say, she had a very hard time sleeping and did not experience a large seizure-like event as she had been at home. We were emotionally traumatized from seeing that poor child on dialysis in so much pain, and I felt really badly for her family, who should have had privacy; they had already been in the hospital for two weeks at that point. The next day, my daughter was discharged and sent home, even though our insurance had approved two nights of monitoring, with a possible third night and she could have been monitored further. She stayed just 24 hours and, in my opinion, was not monitored thoroughly nor properly. They don't even know what is wrong; diagnosis = nothing. They said to have her do a sleep study, but my insurance wouldn't cover it. The sleep study costs 13K. As soon as my daughter got home and was able to actually sleep, she began to have the seizure-like activity again at night. Now two weeks have gone by and she has them every night still just like before. She has trouble breathing when the strong events happen, but the medical system doesn't care about that. I had taken her to Natividad Hospital through the ER previously and had a sociopath for an ER doctor who didn't care at all. My sympathies to anyone who has to watch their child have seizures and deal with medical "professionals" who really don't care and won't do anything to help. So, here we are in the same situation, with no help for my daughter who continues to suffer. I have been calling Stanford every few days to complain about our experience and their Patient Experiences staff placates me and does nothing. They do not respond when they say they will. The NP from neurology called and told me how lucky we are to have had that hospital experience, blah, blah, blah. Lucky? Is it lucky that my beautiful child is terrified to go to sleep? Is it lucky that she awakens with her whole body convulsing and unable to breathe properly? It doesn't take a genius to figure out that when you have a planned hospitalization of a NOCTURNAL seizure patient, you don't put them in a room with a suffering child who is crying out in agony all night; you are not going to get a good reading. The NP continued to tell me "that's just the way it is". What? All I know is that I had a lot of faith in Stanford and their "best and brightest", and now I see that they are a unprofessional team who doesn't care about their patients, not enough to take the time to figure out what is happening to the patient in a timely manner. The unprofessionalism comes from the top; the administration and the lack of concern for patient care. And, by the way, I can't take her anywhere else without a referral for monitoring. I tried UCSF and they want a referral that I don't have. So, we just get to sit back and hope she doesn't die in her sleep. If your child is having seizures and you don't know why, I don't recommend taking him/her to Stanford. Even though they say they have an Epilepsy Center, they don't and they will stick you in some other ward. And if your seizures are NOCTURNAL, they will stick you in a shared room with tons of noise, so you will never know what is causing your seizures. Thanks but no thanks to Lucile Packard for the sub-standard lack of care for my daughter who is suffering. Read Less