Tiara was 11 years old, in the midst of puberty, getting progressively more violent and having about 8 seizures everyday. She still loved to play basketball and one day in August I took her to the park with Trinity around 10am. The three of us were playing ball but within 10 minutes of arriving she wanted to go home, which was very unusual. Back then I would have to beg her to leave the park, so I was really surprised she wanted to leave so soon. I convinced her to stay a little longer, but then she was acting weird and looking overheated. We decided to leave and go home and as we were walking into the house, she started throwing up everywhere. I was totally shocked. It didn’t seem like the stomach flu, and I had a funny feeling about it. I got her to the couch and was holding a bowl for her and every time she stopped throwing up her eyes would roll back into her head and she seemed like she was passing out. I took her temperature, but it said 96 degrees. That was even weirder. She kept waking up every few minutes, would throw up really intensely and then immediately lay back down.
I called her pediatrician and told him I needed to come in right away something was really wrong. The girl at the front, was new and tried to connect me with the nurse. I explained that I didn’t need the nurse but needed an appointment immediately. She then started arguing with me that there was no available appointments the rest of the day. I then told her ” well, I live 5 minutes away, so just tell Dr. Michelis, I will be there asap, and I know he will see us!”
By the time I got Tiara in the car and drove to the office she was so weak from vomiting, I had to wheel her into the office in her wheelchair. Our favorite receptionist checked us in but they didn’t show us back to a room right away. I had brought Tiara’s bowl in with us and of course she started vomiting again. Yet, we still didn’t get shown to a room. The new girl kept glaring at me and all the other parents ran out of the sick room with their kids as if there was a fire. I did’t blame them for a second, I would have done the same thing. Finally a nurse came and got us from the back and showed us to a room. As we were going to the room, our favorite receptionist apologized and explained the rude new girl was trying to make us wait, really, like I couldn’t figure that out.
Anyway, as soon as we were in a room, Dr. Michelis came in right away. He was always so attentive to Tiara and took great care of her. I explained my concern about her low temperature and the weird vomiting. He took her temperature himself and now it was 95 degrees. He was shocked and couldn’t figure out what was going on with her. We thought maybe she had eaten something poisonous in the garden when I wasn’t looking or had some weird infection that can lower your body temperature. Either way, he decided it was an emergency and called 911 for an ambulance. This wasn’t the first time he called 911 from his office for Tiara and we had learned from experience taking her to Hoag was a waste of time, so he would direct the ambulance to drive us straight to CHOC.
As they took her out of the office on a gurney, I passed by the rude front office lady and smiled and said “I told you it was an emergency!” I just couldn’t help myself. Once we got to the hospital, Tiara had stopped throwing up and her temperature was returning to normal. They did a bunch of blood tests which all came back normal. After 3 hours of laying around, she was suddenly sitting up and moving around and wanted to leave. The doctor said he couldn’t find anything wrong with her and she was getting so anxious to leave, we got up and walked out with his permission. Since we came in the ambulance, we had no car and she had no shoes. So we waited outside of St. Joseph’s on the curb for my husband to pick us up. We looked a little odd, especially since her whole body was covered in band-aids from the numerous attempts to get blood and the stickies from the leads they put all over her body to check her heart.
A few days later the vomiting thing happened again. Back to the doctors, but once again, he couldn’t find anything wrong and suggested we meet with a gastroenterologist. I called the office right away and begged the doctors secretary to squeeze us in as soon as possible. Any new patient appointment with a sub-specialist is usually scheduled from 6 weeks to 3 months from the date you call. The doctor received a message from us and a personal phone call from our pediatrician, so she decided to make a special time to meet with Tiara, within a few weeks of my first call.
I remember going in that day and Tiara threw up in the doctors trash can twice while we were waiting to see her. The doctor went through every possible diagnosis based on Tiara’s records and said she just couldn’t explain why she was vomiting so often. At this point she was throwing up almost everyday. She felt as if something else was going on, that wasn’t related, but offered to do more blood tests and some scoping procedures. She didn’t believe in her heart it was a gastroenterologist issue, but more likely a neurology issue. She gave us the option of starting some new stomach meds, which we tried, even though I knew in my heart it wasn’t her stomach.
School had started and her teacher would call me almost every day between 11 and 1:30 to tell me Tiara was throwing up again and I needed to come pick her up. I finally stopped taking her to school.
I was feeling so panicked because no one could figure out why she was so sick. She was losing weight and getting weaker by the day. I would literally take her to the pediatricians office 3 times a week even though he believed it was related to a neurology issue and told me there was nothing he could do. Either way, as I waited for the specialists to help I would take her to see Dr. Michelis because she cried to see the doctor everyday. Whenever Tiara feels the slight bit sick she immediately starts asking “doctor, doctor, call.” Her neurologist didn’t believe it was her issue to deal with but an issue for the gastroenterologist. I had never felt so frightened about Tiara’s health in my life. I was constantly researching, documenting and trying to figure what could be wrong, since no one seemed to know.
I kept hounding the neurologist, so she finally came up with a plan. She told me to take Tiara to get blood work as soon as she started throwing up. I know, crazy or what? Guess, what, I did it, because I had no choice. I dragged her into the lab at Hoag in the midst of a vomiting attack and had them take her blood. I was also told to take her temperature rectally because no one was believing 95 was an accurate temperature. So every time she had a vomiting attack I had to take her temp rectally numerous times and keep records. Guess what? It would literally drop from 98 to 95 within minutes and stay at 95 for hours. My final job was to rush her back to the Emergency room and have them get an x-ray of her abdomen during an attack. Crazy again, but I did it. It was during this last ER visit that the brilliant doctor she had seen before looked at me and said “THIS IS A SEIZURE!” What? “Kids with Tuberous Sclerosis can have seizures that present really weird, and I have never seen a vomiting seizure before, but I know they exist and am I sure that is what is going on. There is no other explanation.” He then called UCLA and told the on call neurologist his theory and told them he was once again releasing Tiara from the hospital.
I instantly felt such a flood of relief. That feeling only lasted for only a few minutes, before I started making my plan for Tiara. I knew what I had to do next.