Once she had totally stopped the phenobarbital I started noticing her making funny grimaces. At the time, I didn’t realize seizures came in gestures, head tilts, eye blinks, laughs, vomiting episodes and of course you stereotypical tonic clonic/grand mal variety that we have all seen on television. But you see, Tiara’s seizures have always looked different than what you might imagine a seizure looks like. And so I didn’t instantly understand the funny face was a seizure until Christmas Day. Once again, she wasn’t feeling well, as she was chronically sick with ear and respiratory infections. She looked at me and gave me the strangest look without really looking at me at all. I instantly felt that sinking feeling in my stomach when you know something is really wrong. Within days of seeing that look on her face, I saw it again and again and now it was accompanied with her chest lunging forward just like before and so I knew the seizures were back. I immediately called UCLA and told them I thought she was having infantile spasms again and they had to do something right away. They increased her Vigabatrin dose and scheduled an EEG. The EEG showed she was not having infantile spasms but partial complex seizures. Another type of seizure had developed since the spasms were under control. I did not know then that Tiara would have partial complex seizures everyday of her life despite all the different combinations of drugs she would eventually try. As I write this today, I can only remember one day in 13 years life since November 1999 where I do not remember seeing her have a seizure.
After they diagnosed her with partial complex seizures they needed to add on a different seizure medication that could try and control those types of seizures. And so she started on Lamictal, her 3rd seizure medication. Despite adding on this medication, she continued to have between 3 and 10 seizures everyday. She is now 18 months old and is once again sick. It is April 6, 2000 and I have been holding her in my arms all day. She seems so weak, and yet her fever is only 101.5 but I can feel something is really wrong, yet I don’t know what it is? Is it her heart, is it the seizures, has she developed a problem with her kidneys, or is it just another virus? I don’t know and neither does her doctors. I took her to the doctors today and they thought it was another virus, but yet I am not sure. Something feels so wrong.
My sister came over to bring Tabi and I dinner since I couldn’t put Tiara down for even a moment to make dinner. I was holding Tiara in one arm, staring at her face and eating with the other hand when suddenly her legs started twitching. She flung her arms up over her head and I knew instantly she was having a seizure but I figured it was just one of her “normal” seizures. But it didn’t seem to be stopping. After 15 minutes I called the nurses line and as I was talking to the nurse Tiara started foaming at the mouth and throwing up white all over. Her body became totally limp and her lips turned blue.
I had never seen anything so scary in my whole life. The nurse told me to hang up and dial 911. This may sound really weird but if you have never dialed 911 before, it is very intimidating, or so I thought at the time. I mean when you dial 911 you should have an actual emergency and having a real emergency is so scary. Yet, I would eventually learn to call 911 without even thinking twice and when they arrived I would usually recognize a least one paramedic or firemen as they frequented our house and Tiara’s school on a regular basis.
Once the paramedics arrived, they said it was a “code red” and immediately put her on oxygen and put her in the ambulance. I rode with Tiara to Hoag and the paramedics wanted to give her medicine in the ambulance to stop the seizure but I was so insistent they wait until we got to the hospital. I was so worried it would be too much medicine and I didn’t trust they knew what they were doing. I now know, it would have been fine but “status seizures” were new for me. Once we arrived at Hoag they started pumping her full of Valium but she wouldn’t stop seizing. They began to worry if they sedated her too much with the Valium trying to stop the seizure,she would no longer be able to breathe on her own. They decided they needed to intubate her and put her on a respirator. Lou and I actually sat at the foot of her bed in silence as we watched them try numerous times to put the tube down her throat without success. She was so small and Hoag is not a pediatric hospital so they were having a difficult time. They had to call around the hospital looking for a doctor that could finally get it done. They were so stressed trying to get her intubated and 15 people were working on her at once that they forgot to ask us to leave during their trial and errors. They never let parents stay and watch something as serious as intubating a child but I knew if I stayed silent they would forget about me and I couldn’t pry myself away from her side.
Years later when doctors would ask me to leave during a procedure I would tell them “ I have seen my child intubated, I think I can handle it.” They are always shocked to hear I witnessed her intubation but they then knew I wasn’t squeamish and always let me stay with Tiara.
There is always a bright side to every situation. Once she was intubated they continued to pump her full of drugs until she finally stopped having the seizure. It lasted 2 hours. And so that was Tiara’s first but not last status seizure.
Read Week 6 of my Journey with Tiara, here…