Unfortunately, the news I have to share tonight is not of the positive kind. Over the last few days, Gavin has been experiencing a rather worrisome new symptom. What we’re seeing could be related to his autonomic dysfunction, epilepsy, neuromuscular issues or childhood disintegrative disorder. It could also be completely unrelated to anything we currently know about and is instead something altogether new.
Gavin has been losing control of his legs. What do I mean by that? I mean that he will be walking and then his legs just stop listening to his brain. That’s actually how Gavin explains it.
It’s to the point that he’s afraid to use the steps because he’s afraid he’ll fall.
This is something that I need to speak to his pediatric neurologist on Monday about. He handles Gavin’s autonomic disorder and epilepsy. I think this will fall into his purview and we’ll find out what he wants us to do.
Truthfully, I don’t know what can be done but my guess is that he’ll want him to have an EMG. This is when they insert tiny needles into his legs and run a small electrical current through. This how they test to make sure his nerves are physically working.
Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). Motor neurons transmit electrical signals that cause muscles to contract. An EMG translates these signals into graphs, sounds or numerical values that a specialist interprets. -Mayo Clinic
I’m worried about this because it means we have to be very careful to ensure his safety.
Apparently this has been happening for at least a few days but Gavin didn’t think it was important enough to tell us about it. He’s talking to us constantly about whatever’s on his mind but the one thing we needed to know about, he kept to himself.
I tried to explain to him that this is one of those things he needs to tell us about when it happens. He says he gets it but the very fact that I have to explain this to him in the first place tells me he doesn’t.
I’m really stressed out over all this shit and I wish I knew for sure what this all meant because until I do, I will be worried. 🙁