Chapter 38: New Seizures?
One day in early September I got a call from the school telling me that Kayda had had a seizure and that I needed to get there right away. I went, and she was fine by that time but I decided to take her to the Dr anyways. Over the next few weeks, there were several incidences where Kayda would startle and go in to this really severe reaction. Her whole body would tense up, her arms would fly out and over her head, her breathing would get really fast and noisy. It appears that this is what the school had called a seizure. It took only a tiny noise for her to have this reaction. Usually the only thing that calmed her down was for me to hold her and rock her for a few minutes. I remember one morning when I was called shortly after she got to school. She had startled while on the bus and after more than half an hour at school was still not settled. I went in and picked her up and after a minute she lifted her head off of my shoulder and made a noise as if to say “see my Mom can fix it”. She was fine the rest of the day. Despite numerous Doctors’ visits and reassurances the school staff were convinced Kayda was having seizures when she had these episodes. As they were instigated by a noise they were clearly not seizures. Things grew tense through that Fall with the school as I kept maintaining that she wasn’t having seizures and they (her aide mainly) remained convinced that she was. Even other support staff came in and said that they were not seizures.
Then, one day when we were at the Doctors’ office regarding these startling episodes, she all of a sudden stared off into space for about 2 minutes. The Dr and I just looked at her and then wondered if we’d seen what we thought we’d seen. She then came out of it but a few minutes later did the same thing again. These episodes were clearly seizures. I started keeping track of these staring spells and after several weeks they were getting more and more frequent. In mid November Kayda came down with a cold and was hospitalized for a few days. While there I spoke with the pediatrician and he agreed that she was having seizures. He put her on Clobazam. He gave me no schedule on how to increase it but just told me to start giving it to her. At the time she was all congested and clearly sick.
That weekend I had planned her very first little girl’s birthday party. I’d invited a number of her friends from school, in addition to Amanda & Cathy. I arranged for a lady in town who had a Fairy shop to come and have a “Fairy” party at our home on the Sunday. Sunday morning Kayda wasn’t well at all, She was so congested and slept constantly. As the day went on I realized that the Clobazam was over sedating her to the point that she couldn’t cough and clear her own airway. I figured that she should likely go to the hospital. However, I couldn’t cancel the party.
All the children had a wonderful time. They were so concerned about Kayda and how sick she sounded. Kayda slept through the entire party. I only have one picture of the party as it was a complete disaster as far as Kayda went. She got some lovely gifts. I was touched over how caring all the children were. They were there for Kayda, not just to have a party.
After the children left, I checked Kayda’s oxygen level and it was ok. I decided to keep her home and just keep an eye on her and to stop giving her the Clobazam. I looked it up on the internet and learned that it’s in the Valium family. How dumb could I get, with a drug name that ended with “zam”. She’d been on it before during the first year she lived with me but it had been started slowly, and she hadn’t been sick at the time.
During this time, even when she didn’t have a cold she always was gurgly. I spoke with her pediatrician and told him that she didn’t seen sick but was just having trouble with secretions again. He oked an increase in the Robinul and said it was ok to send her to school.
In the middle of December I received a copy of a letter that the school nurse had sent our family Doctor In it she told the GP that I was sending Kayda to school when she was increasingly congested and having seizures (the startle episodes-no one was worried about the staring spell ones at that time). The nurse wanted to know if the GP really felt that Kayda was fit to attend school. They were also worried because Kayda usually had a very red face. They were convinced that she had a fever. She actually had Rosacea, which is a form of acne and causes a very red face. I just about went ballistic!!!! That ruined any respect I had for the nurse.