I spent part of the weekend putting together a montage of a few short videos I took during KayTar's last episode, complete with text slides labeling the main symptomatic behavior exhibited in each clip. I emailed it to the pediatrician and she emailed me back today. She asked me a lot of questions. It is hard to read emotion in an email, but to me she seemed a bit more worried, or I might have been reading into it, I'm not sure. She said she is going to present KayTar to the chief of pediatrics and the Children's Hospital. She also said that after seeing the video, she is starting to think about other diagnostic possibilities. She didn't mention what those possibilities are or why the video made her decide to present KayTar to the chief...that coupled with the fact that she asked so many questions made me panic. Actually panic, I think. When I read the email, I felt like I was falling down really quickly on the inside. I received it right before I had to pick BubTar up from school. My chest felt tight the whole time I was in the car and when I tried to breathe in deeply, I thought I was going to be sick. Thankfully, the feeling passed.
The chief of pediatrics at a Children's Hospital is what you might call a "big gun", and I am wondering why the video made her decide to pull out the big guns. I wonder what diagnosis she is thinking about now that would prompt such a decision. After seeing the video, does it rule out migralepsy? Does it make another diagnosis clearer? I feel more confused than I was. When I sent the video, I thought "Will she be able to note the change in behavior, since she doesn't see KayTar on a daily basis? Will she even know anything is wrong?" I was worried that the video wasn't going to show her anything that was helpful in diagnosing. Now I am wondering what part of the video sent up red flags? I have been describing these in as much detail as I can for months. Was I describing them wrong? Was there something key that she is seeing that I haven't mentioned? Have I accidentally lead them in a different direction than we should have been going? There are so many questions running through my mind, and I don't have an answer for a single one.
You are continually in my thoughts.
Oh goodness... I hope you get some answers soon. I'm glad you made the video and sent it to the pediatrician - you are your daughter's greatest advocate. I'm thinking of you & Kaytar.
You are more involved in this process than many parents are or can be. Most people I know can't send their doctors video showing the problems their children have. (I think if I had my ped's e-mail I would be the happiest mom on earth.) I imagine the big guns are being pulled out because you are giving them so much information. You doctor has a lot to go to the chief with, which means that a meaningful examination is possible. Don't worry. I think this is a good sign that you will soon have the diagnosis you need.
Oh Kyla. Don't every worry about putting too much on us. We can take it. You are in my thoughts and please keep us up to date, okay?
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