Tiara was now five months old and Tabitha was a first grader at Carden Hall. Everyone in the family was still mourning the loss of Popie but she had left me an inheritance which was just enough for a down payment on a home in Costa Mesa. Louie and I had worked really hard to clean up our credit and were able to qualify for a loan, so for the first time in a long while we were feeling really hopeful for our future.
It was during the moving process that Tiara started having what appeared to be stomach problems. She would repeatedly crunch her body forward and simultaneously scream out in pain over and over again. Each incident would last approximately 5 to 10 minutes and would happen many times throughout the day. I immediately took her to the doctor and her normal pediatrician; Dr. Krumins wasn’t available that day so we saw Dr. Conrad. She thought Tiara may be having problems digesting my breast milk. I had some problems with my milk when I breast fed Tabitha and now Tiara was having some problems so we agreed I would start supplementing with formula. We put her on a soy formula, but the screaming and pains only worsened. We then tried a regular formula and when that didn’t work we switched her to Nutramigin. It smelled so disgusting I felt guilty feeding it to her and it didn’t stop the stomach pains. She then developed a series of ear infections, which only confounded the puzzle of trying to figure out what was going on with her. Dr. Conrad then considered the possibility she was constipated. She suggested I stick my finger up Tiara’s rectum when she was crying to see if she had a hard stool stuck. As you can imagine, it was terrifying the first time I had to do it, but like all things with practice, within a day I was an expert at probing her rectum. After a few days of torturing Tiara with my exams, we determined constipation was not the problem.
I was starting to feel panicky. I was at the doctors with Tiara every other day and I knew something was wrong, but I didn’t know what and neither did they. Every time she would have a screaming episode a knot would form in my stomach, my heart would race and yet there was nothing I could do, I felt so helpless. At this point her pediatrician asked me “Do you think she could be having seizures?’ “What? I don’t know, she isn’t shaking or anything.” I replied. “Well”, she said, “Ok, but I am wondering if we should do an EEG instead of focusing on her stomach?” We both wanted to believe it was her stomach, so we decided she would write referrals for both an EEG and a gastroenterologist consult. A few days later we were invited to a couples dinner at a friend’s house. I refused to leave Tiara with anyone so she came along with Lou and I. Soon after we arrived, she started having a screaming episode. One of our friends at the party worked as a nurse in the recovery ward at Hoag Hospital. I asked her “Is this a seizure?” “No, that’s not a seizure, something is wrong with her stomach,” she said. I called Dr. Conrad the next morning and confirmed we should continue exploring the problem as a stomach issue because they were definitely not seizures. She expedited the authorization for the gastroenterologist and we saw a specialist within the week.
At this point, Tiara was sleeping most of the day or starring out the window. She would sit in her high chair or bouncy seat and just stare at nothing. She was totally listless and seemed dazed as if she wasn’t truly present. She was fading away from me and I didn’t know why.
The gastroenterologist prescribed two different medicines which only made her worse, if that was even possible, and ordered an emergency upper GI. I got her an appointment over at the Hoag Center in Huntington Beach because they had a cancellation the next day. I was so stressed out because I was fearful she wouldn’t be able to drink the barium. Surprisingly, she was able to drink enough of the barium to get the x-rays. As I tried to hold her still for the x-rays, I watched the tech like a hawk. I stared at him with laser eyes, just looking for any expression or change in demeanor indicating he had found something wrong. I felt like I couldn’t breathe, I was so anxious and then he looked at me and said, “ There is nothing wrong with her intestinal tract. You will have to wait for the report from the doctor, but I can tell you he won’t find anything.” I was stunned. How could there be nothing wrong with her stomach? This is a mistake, somebody needs to help me, something is wrong with my baby. Why can’t anyone figure it out? A few days later Lou came up with a brilliant plan. He said, “Let’s video an episode so we can show it to the doctor.” I don’t know why nobody had thought of it until now, but it was 1999 and we didn’t have video or cameras on our cell phones. So we charged up the video camera and the very next morning she had an episode while driving to Tabitha’s school for a performance. We pulled the car over and started filming. After Tabitha’s performance Lou left for work and said, “Take her straight over to see Dr. Conrad and show her the video.” Usually I tell Lou what to do not the other way around so this was a little weird, but he knew I was stalling. “But, I don’t have an appointment,” I said. “That has never stopped you before, Tiffani. Go there right now!” I was so scared, I knew in my heart something bad was happening and there was nothing I could do. I took Tiara to see Dr. Conrad and showed her the video. She pursed her lips, looked at me and said, “ I need to show this to Dr. Krumins and I will be right back.” She came back a few minutes later with Dr. Krumins and 2 other doctors. “ Based on this video and how she looks we want you to drive her straight to Children’s Hospital of Orange County (CHOC). I am very concerned with her pallor and how dazed she looks; she has changed in the last few days and not for the better. I think she is having seizures. I will call ahead and let them know you are on your way.”
I wasn’t shocked, because in the back of my mind I had already known Dr. Conrad would give me horrible news. That is why I was so hesitant to go see her.
I called my mom and asked her to pick up Tabitha from school and then called Louie. We agreed he would meet us at Choc since it was close to his work. It was Friday of Memorial Day Weekend and for once Lou was going to have the whole weekend off, but now we were off to the hospital. As soon as we got to the hospital we were taken to a room. Tiara had an episode while the nurse was doing her intake assessment. Within minutes an EEG tech rolled in his equipment and started putting the electrodes on Tiara’s head. Once he turned on the machine and started recording her brain waves, I immediately saw his face change. “Is something wrong?” I asked. “ You will have to speak with the doctor. I am not allowed to give you results, I am only a technician” he said. The test lasted about 10 minutes but soon after he left, Dr. Stein, the neurologist, came into the room.
He introduced himself and then told us that Tiara was having infantile spasm seizures. Infantile spasms were extremely rare and the worst possible type of epilepsy. These seizures were causing Tiara to have abnormal brain activity every second of every day. He then did a medical exam of her body with a special light, looking for de-pigmented lesions. He found more than six. He told us he suspected what was causing the seizures but he needed to confirm his suspicions with a CT of the brain and an ultrasound of the heart. If you have ever been in a hospital, you know everything takes forever unless it is an emergency. Clearly, the doctors were as concerned as Lou and I were because all the tests were completed within hours. That night Dr. Stein came back to the room and told us, “Tiara has Tuberous Sclerosis.”
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