About a month ago, Greyson began doing a strange flopping behavior where his upper body goes completely limp and he does a little twitchy jerking motion. In the above video right around 9 seconds, you can see G approach the cube bookcase and go limp, then jerk around.
If you missed the movement in the first video, look closely at the second video around 15 seconds. You can see Greyson clearly as he turns in my direction, does the strange movement and runs off.
As a parent, I never wanted to seem like the hypochondriac mom, but with G’s encephalopathy diagnosis and suspicion that he is having petite-mal seizures, I wanted to try and catch the behavior on video.
I sent the videos to Greyson’s local neurologist and received a vague response a day later: “it’s a motor tic, most likely caused by his developmental delay.” I felt deep down that this answer was not enough. This was a behavior that recently began and he wouldn’t have picked this up from any other child. I sent the videos down to Kennedy Krieger for a second opinion.
Our follow-up with Dr. Comi was not scheduled until August 3, when we were set to see the vascular neurologist for an appointment. Once Dr. Comi saw the videos, we were immediately placed in her schedule (over her lunch hour) to be seen. My gut wants me to say that yes, this is a tic, but something deep inside is telling me that it could be something more.
With exception of signing “more” and “drink”, Greyson has not made too much progress in his communication skills and I have yet to see him play functionally with a toy, though he will sit and look at a book. He is consistently stuck at age 6-9 months, cognitively speaking and I am terrified to think that the strange tic could in fact be a small seizure, which could impact further development. He frequently stares off into space, making it extremely hard to break his stare, or regain his focus. We did have an awake and drowsy EEG completed in December 2017, but that was inconclusive. My thought is that we may see more results from a 24-hour EEG to monitor what could be going on.
Since we were last seen at Kennedy Krieger, we have received some lab results from G’s fatty acid, protein and amino acid testing. I am not a genetic or metabolic doctor, so I have no idea what I am looking at when I see a flagged “Impression: very long fatty-acid chain”, or several flags stating that he has high levels of a really long acid I can’t even pronounce, let alone try to spell. I’m hopeful that these results will make more sense to us, rather than words on a page by the time we are done with this appointment. I’m also hopeful that the results from the two-rounds of DNA testing and arrays will be given to us and explained. It’s a lot to soak in and digest.
So please, keep him in your thoughts this Friday, as we venture to Baltimore again for more testing and hopefully some answers. He’s such a little trooper. ❤️
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