It is Spring 2003 and Tiara’s seizures have been really great for her, which means she is only having a couple everyday. She is admitted to UCI to be assessed for brain surgery again because even though the seizures are better her neurologist isn’t a big fan of Depakote and wants to explore all the other options. As you remember she has already been through phase I telemetry at UCLA 2 years before and she was not deemed a candidate for brain surgery. Now her local neurologist is pushing us to do it again but his time with UCI, because he thinks something may have changed. I am sure nothing has changed and all the doctors always think their system and their facility is the best, but because I don’t just want to say No, I agree to endure the torture and submit to another hospital admission. In the back of my mind, I knew she wouldn’t be a candidate, but what if I was wrong? I had to try again.
Once we are checked into UCI, I instantly have a bad feeling. As you may or may not know, UCLA back then had a really old hospital and it was pretty dirty feeling. Every time we would visit or be admitted for brain telemetry Tiara would immediately come home with a virus. It got to the point where I feared taking her to UCLA for any type of appointment because her immune system was so weak and even though the appointments were to help her, she always ended up sick. Well let me tell you that UCLA looked like the a 5 star hotel next to UCI. It was behind disgusting and horrible. They gave her a room with a cracked window, which you couldn’t see out because it had some weird film over it. The hot water did not work on the faucet that everyone was supposed to use to wash their hands prior to examining my child and there was no sanitizer dispenser in the room. I was feeling so uncomfortable and then I sat down on the bed with her and looked over at the wall next to her bed, only to see it had old buggers stuck to it. Yes, I am serious right now. I immediately complained to the nurses who apparently couldn’t seem to find our room because we sat in that horrible room for an hour before anyone even came in. They also hadn’t even hooked up the leads to her head so in the hour we had been my anxiety was just rising and rising. This wasn’t going to be a good experience, I could tell already.
Once Louie arrived and I showed him the situation and explained that I was seriously freaking out. He said, “honey you just have to deal with it, it will be fine.” Well after the second day wherein she had only been on telemetry and had not gotten an MRI or a Pet Scan I just couldn’t take it anymore. I complained to her doctor about the conditions and the lack of nurses present and he tried to convince us to stay another few days. He said they were planning to build a new hospital in the future and that he had no control over the room situation. He also told me they hadn’t captured any seizures on the film yet. “WHAT?” I knew for a fact she had 2 seizures already. I told him and he said they weren’t seizures, they were just a reflex or a behavior. Really? Well, that was it. This is a serious joke, you can’t even recognize a seizure on telemetry? I knew at that moment they were not going to get any new results and even if they did I would never let my child have brain surgery in that facility ever, so we left. Needless to say he wasn’t happy with me and luckily a few months later he transferred hospitals so we made our way back to UCLA. After he told me that she wasn’t having a seizure, it was a behavior I had lost all faith in him. I realized I had been wasting my time trying to get her the best care in Orange County. Driving to UCLA was a bummer, but nothing like dealing with the people or conditions at UCI, so from then on we always made the commute.
I have to revisit this seizure issue for a minute because it has been a frustration for me for years. After this past incident the same seizure was captured on video at UCLA months later and they too said it wasn’t a “real seizure” Apparently to qualify as a “real seizure” the spiking on the machine has to correlate with the physical manifestations on the person. If you only see spiking on the EEG and no physical signs it isn’t a seizure and if you see physical evidence and no spiking on the machine it isn’t a seizure. Years ago all the neurologists followed this theory.
The seizure in question looked and still looks like this: Tiara falls asleep and within minutes, she suddenly throws open her eyes, starts gagging and drooling and making grinding sounds and sometimes even vomits. This goes on for about 30 seconds and then she closes her eyes and goes back to sleep. I mean logically any bozo can figure out that it is a seizure, but No. he wouldn’t go past his tests and acknowledge the possibility. I have to tell you that last year, after 9 years of doctors telling me I was wrong, a team of neurologists at UCLA finally admitted the truth. They are not able to capture all seizures on telemetry. Wow, reality check. If the seizure originates from a tumor deep in the brain, it can’t be picked up by telemetry. Now, why couldn’t anyone just have admitted that to me years ago? Well it appears they couldn’t admit to it because their theory has only recently changed in the past few years. Neurologists will now consider a seizure to be a “real seizure” based on either the physical or the telemetry, it doesn’t have to appear on both. Thank God for medical progress and doctors finally admitting they don’t know everything about seizures and how the brain works.