Tiara is still vomiting all the time and now that we suspect the vomiting is actually a seizure, I knew I needed a lot of help from her neurologist and fast. The next day I spoke with her neurologist at UCLA and explained the Emergency Room Doctor’s theory that the vomiting was a seizure. She still wasn’t convinced because it was so rare but she said we needed to get Tiara hooked up for an overnight EEG monitoring as soon as possible, to try and confirm the theory.
Once again, these appointments are impossible to come by but by some miracle they got us in at the end of November, the day after Thanksgiving. We packed up our stuff, expecting to stay for a couple days as that is how long you usually have to stay for them to record enough seizures. We had been through this lots of times before so I knew we would be in the hospital anywhere from 2 days to a week.
We arrived UCLA at 6am as instructed but weren’t put into a room until 2pm, because of some emergency. Unfortunately this wasn’t was really surprising because the system is so overwhelmed with patients, I always expect some kind of wait or emergency. Many of my friends have been turned away at the last minute, so I have learned to wait without ever complaining. I was just grateful that she finally got a room, and had all the leads on her head recording her brain activity by the end of the day.
Lou had taken the day off to help me get her checked in, but left us to go home and take care of the other girls once we were situated. Tiara was in her cutting phase and we had our own room so it was great. We put on her music, had a stack of magazines and she just cut away. I sat with her on the bed, making sure she was always in the view of the camera. I was supposed to click a button each time I saw a seizure. After you click the button, you then need to record what you saw on a piece of paper, along with what time it started and ended. Since she was having so many seizures during this time of her life, I kept pretty busy. She didn’t have a vomiting episode that first day, so I was hoping that the next day she would, because the sooner she vomited on camera, the sooner we would get to leave. Sad but true.
The next morning, she was as busy as ever. The room looked like a bomb had gone off with magazines everywhere, crayons, markers and books. She was getting off the side of the bed to go walk around to the desk area and I was walking towards her when suddenly she flew straight to the ground in a drop seizure. Just as she started to fall, I tried to jump across the bed, but I wasn’t fast enough. At the exact same moment she was falling, a nurse was opening the door to our room, but she wasn’t able to catch her either. Tiara some how kept her head up, maybe it was my earth shattering scream that alerted her to hold her head up, so when she fell, she didn’t smack her head on the hard floor. Either way they sent for a doctor right away to check her out, but she seemed OK. I was so shaken, especially since I hadn’t seen her have a drop seizure in over a month and was so surprised it happened in the hospital at that moment. The thing with drop seizures is there is never a warning or an aura like with some of her other seizures. Sometimes her facial expression would change, or the tilt of her head would signal me a seizure was approaching, but not with her drop seizure. It was always instantaneous, one minute she was up, then the next moment she was flat on the ground.
Shortly after that seizure, Lou showed up to spend the day with us. The doctors came around to do their rounds and luckily enough her first UCLA neurologist, who was in charge of her Vigabatrin study was doing the rounds that day. He knew us and Tiara’s history well. He told me they had seen the drop seizure on the EEG film along with lots of other seizures. He started to tell me about all the seizures they had captured in 12 hours of filming and then said we were free to go home.
“What? Why are we going home? We just got here and you haven’t seen the vomiting seizure yet.” He then explained he didn’t need to see the vomiting seizure, he had seen enough. I was so confused. I then started talking to the whole team, which was 5 people I think and asking them what was the next step. I needed a game plan for Tiara, she was wasting away. They all just kept looking at me and weren’t really saying anything.
None of them were totally convinced the vomiting was a seizure so the head doctor came up with a sure fire way to determine if it was. He instructed me to give her Diastat, rectal Valium, the next time she vomited. If the vomiting stopped, it was a seizure, if the vomited didn’t stop, it wasn’t OK, I can do that, but what is the plan aside from that? What about all these other seizures and the fact she can’t go to school and is losing weight everyday?
They just kept looking at me, as I was talking and none of them had anything to offer. When they walked out of the room I started to cry in frustration and looked at Lou and said “why won’t they help, why aren’t them coming up with a plan?” I will never forget his response. “Tiffani, they don’t know how to help her.” He then explained how he felt watching me talk to them. “You can’t see it, Tiffani, but I could see it in their eyes, they were just letting you talk, because they don’t know what else to do, that is why they are sending her home. They can’t make a plan because there is no plan to make, they have nothing left to offer her!”
I was mad, angry, hurt and frustrated. How could they not have a plan? I knew she had tried every seizure medication that existed in every different combination but there must be something else? Somebody has to help her.
We packed up and went home. A few days later she had the vomiting seizure again and I gave her the Diastat as instructed and the vomiting stopped instantly. I had proof, it was a seizure. I emailed her neurologist and told her the news, she acknowledged my email, but I still wasn’t feeling like she totally believed it was a seizure and even if she did, what could she do about it? Her medications were all at maximum levels.
Unfortunately, a few days later, Tiara started vomiting like crazy and when I gave her the Diastat it didn’t work. I took her temperature and this time, it wasn’t low, but high. She must have the stomach flu, but I wasn’t sure. I felt so confused, what was wrong? Was this a regular flu or a crazy seizure? I couldn’t get her to keep down her seizure meds so I called her doctor and she said we needed to drive straight to UCLA.
If Tiara missed a dose of her seizure medications she most likely would go into a status seizure and they wanted that to happen at UCLA as opposed to another hospital or at home. I had been up all night and was beyond exhausted but I called my mother in law and asked if she could drive up with me. I got a stack of towels, clothes and a bowl and we drove to UCLA with Tiara vomiting the whole way. Of course the ER was swamped and she was stuck vomiting in the waiting room until they found her a gurney in the hall of the ER. I kept telling everyone about the vomiting seizure and they took her in for a CAT scan to rule out hydrocephalus or any other emergency neurology issue.
After about 5 hours, they finally moved her into an room in the ER and hooked her up to the EEG again. She started having really long seizures lasting 20 minutes because of the missed medicine. By that night she was still vomiting, but now it was green and looked like nothing I had ever seen. She also was really agitated and kept pulling my hair and hitting me and one of the nurses was so rude. She kept threatening to restrain Tiara if she didn’t stop hurting me.
She was so sick, all the monitors kept alarming, she kept having seizures and yet she still had enough strength to try and beat me up. The nurses decided Tiara was too sick to stay on their floor and needed to be moved to the ICU, where a nurse could watch her more closely. They called neurology, and they said No, they didn’t want her moved to the ICU, she could stay on “the floor.” It was so weird, the nurses kept calling the doctors in charge and calling this code where an ICU doctor and nurse must come and assess the patient and determine if they should be moved. The first doctor said, Yes, move her to the ICU and the second said No, we can wait it out. Finally the head nurse on the floor just reassigned every patient and gave Tiara her own nurse to sit with us and monitor her vitals and the EEG the whole night.
That wasn’t the last time Tiara put the doctors and nurses at UCLA Medical Center into a tail spin, that was just the beginning.