Thursday, September 10, 2015

More Worrying about My Little Ball of Worry

Seizures. I absolutely hate the damn things. No matter how many times you see you kid having one, you NEVER get used to it.

I've been meaning to write about this. But it has been hard for me. Morgan had some breakthrough seizures. I laid her down to sleep one night and it happened. Her eyes popped open and she "froze." I kept talking to her and timed how long it lasted while listening to her irregular breathing. About a minute. Damn. Damn, damn, damn... I was sad and angry at the same time. I thought we would have more time than this. I thought, hoped, that once they were under control, they would stay under control.

I know that we will have to watch for seizures her whole life, but I've heard of kids with Idic 15 sydrome getting the seizures under control, then having them perhaps reoccur a few years later - or not at all. I was hoping she was done with them, at least for a long while. Four months. Four months seizure free. Not enough time at all. And I wanted more time. She deserves to have more time to just be, more time to grow and develop without the constant interference of seizures.

The next morning I was emailing her Neurologist. That night, more seizures.

A peculiar thing happened though. Our dog Molly is my constant shadow when putting Morgan to bed. She stays in Morgan's room while I go through the bedtime routine. Once I lay Morgan in her crib, I turn out the light and Molly follows me out. This time, she didn't. She stayed in Morgan's doorway, curled up and laid down. I turned back to see her laying there staring intently at me. This was not normal behavior for Molly.

Molly is a very lighthearted, timid Border Collie/Heeler mix. She has always detected when one of us is sick before we are aware of what's going on. She has done it with me when I've been very sick, she did it with Danny while he's been sick, and she has done this countless times with Kyle. She would act agitated or engage in some other abnormal behavior. This laying in the doorway and staring at me thing was definitely not normal. She never lays in doorways, and she only stars at me like that when she is trying to get me to do something.

I stared back for a moment. In that moment I realized two things. One, Morgan is going to have a seizure, and my heart just sank. Two, at this moment, I'm not the only one watching her. I'm not alone in this. This last realization was very comforting to me.

Morgan had two seizures that night. The next day I heard back from her Neurologist and we were going to increase her meds gradually beginning that evening.

Now an idea has been planted. The seed has taken root and is sprouting rapidly. A Seizure Detecting Service Dog. I'm now on a quest. I've been making inquiries and researching. I don't have any answers yet but I've connected with a couple other parents across the country who have Seizure Detecting Service Dogs for their kid who also has Idic 15 Syndrome. I think Morgan may be a bit young yet, but I intend to get the process started as soon as possible. It won't be easy, and there will be the question of funding, but I have to find a way to make it happen. The idea of her having a trained dog sleeping beside her would allow me to rest better at night. Knowing that someone other than myself was on watch would take give me a great deal of comfort. It is exhausting living in a constant state of ultra alertness.

In the meantime, how do I encourage Molly's unique ability? I don't know why she detected the seizures in this instance and not all the other times. Maybe they were occurring so frequently before that they seemed "normal." Maybe, because she has been seizure free for four months, Molly was able to tell the difference. Whatever the reason, I figure if she did it once, she can do it again, or at least I hope so.

I was truly hoping that we had seen the last of the seizures. my greatest wish was for Morgan's seizures to be over and done with. During the four month respite, I think I convinced myself that we were through with them. It was disappointing, to say the least, to see her have them again.
Since increasing her meds, I'm happy to say I haven't seen any further activity. Please let it stay that way