Chapter 33: Let’s Scare everyone
On Monday Kayda returned to school. Always in the past I had a cell phone and was always reachable. Well the cell was at the bottom of the lake. Nothing ever happened and Kayda seemed quite healthy so off I went grocery shopping. I got home around noon. On the front door was a note from a social worker who lived nearby (he wasn’t Kayda’s worker at the time) telling me to phone her guardian right away. I phoned, and miss Kayda was in hospital. Around 10 she had started to get gurgly and her aides at school had gotten scared. They couldn’t contact me, so phoned 911. When I got to the hospital, Dave, our service coordinator from the Associate Family program, the legal guardian and Kayda’s aide from school were all gathered around her bed. She was lying there on her back with the head of the bed quite high and an oxygen mask on her face. She was giving this pitiful high pitched cry. That was the cry reserved for extreme situations and could only be quieted by mom. I immediately picked her up and she snuggled in and settled down. The pediatrician came in and said that they’d done xrays and it looked like she had pneumonia. He had spoken with Kayda’s pediatrician and they both felt she needed to come into hospital. Although I’d heard from a couple of nurses that the new pediatrician at our local hospital was wonderful, I still didn’t trust her being there after the problems when she was younger. So, we agreed that she’d be transferred to the other hospital. When the ambulance arrived they assessed her and just didn’t like the way she looked or her breathing sounded. So, we went the whole way to RC hospital with the lights and sirens going.
By the time we arrived at the hospital we had Kayda lying on her side and her breathing seemed better. By the time she was in her bed her breathing was absolutely fine. She didn’t need oxygen or anything. After a couple of hours the pediatrician arrived and he looked at her and said “she’s fine, isn’t she?” I said yes she was. We went home the next day. The problem was that noone had tried lying her on her side. They just left her on her back.
Over the next little while I started rethinking all these supposed illnesses she was having. I realized that the first “false alarm:” had happened just 4 days after starting the new seizure medication. So, I went back to the information I’d gotten off the internet and sure enough, excess saliva was listed as a side effect. It only occurred in 3 out of 200 children studied but I concluded that Kayda was number 4. The Dr didn’t believe me at first but had no other explanation as to why she kept getting gurgly when she wasn’t really sick. Through reading online and asking questions of the people on the mailing list I was on, I learned of a medication called Robinul that dried up secretions. I looked into it and it seemed to be the answer to Kayda’s problems. When I first approached the pediatrician about it, he said that no it didn’t work and that the only thing that was proven to work to help with excess saliva was a scopolamine patch which was used to combat seasickness. So he prescribed that. But, it was currently not available so I managed to convince him to try Robinul with Kayda. Well, that was the miracle we needed. Gone were her false alarm illnesses. It was about 3 months after she started the Sabril when she finally got put on the Robinul. During those months it was very hard to know if she was really sick or not.