It's one of those things that I never thought to consider until someone mentioned it. I had a combination of his WBV on Monday, "anything you're worried about?" No. And we left the appt, but my brain started thinking....
Then the next morning at speech-therapy, my son had had an especially twitchy morning, so I mentioned it to his SLP.
It's a neuro-twitch, is all I can think to describe it. You know when they're babies and their neuro systems aren't formed yet so things are just.... off. People mentioned it when he was a baby, but it was normal then. But it still happens. Happens so much that I've really stopped paying attention to it, except when it's a "bad morning", such as Tuesday, when he was having trouble with his spoon and cereal.
My son doesn't really "wake up"... he Juts out of bed instantly and then is in the room with you. It's not a slow movement; it's fast. So it's always made sense to me that he's a little unstable (aka, why he runs in to the table, or falls unexpectedly like he doesn't have his legs yet). When I have breakfast already made like most mornings, it would make sense to me that he's not really awake enough to work the spoon. I mean, he's been awake for like 2 minutes.
But he's twitchy.
Nearly every morning. Some are worse than others but it's Always. Every morning, for sure.
Some times after naps, if he's slept for a long time.
He has speech therapy 2x a week for articulation disorder at 8am. When he gets up at 7:15, by the time we get there at 8... he's still barely done much but have breakfast and get dressed. (I won't lie, sometimes we're up at 7:30 and 1/2 eating in the car, so he's even less awake by the time we get there). When I mentioned the twitch to his SLP, she said she's noticed it quite a lot. He can still tower the blocks and put puzzles together, but he's shaky. Not like MS shaky, just... like he's not awake and fully in control, yet.
SHE was concerned. She said she'd mention to the OT on-site that works with adults, mostly post-stroke, and get her advice on whether or not its normal for a 3yo to be shaky.
By the time he gets to daycare an hour later, it's righted. He's awake, he's, I'd say, 90% if not 100%. On the weekends, I'd say it takes him about an hour to get to 100% functional.
It's something that's never really crossed my mind. But SLP's concern in combination with that pedi appointment where you think for a moment of everything you'd ever ask a question about....
And then take in account his weird articulation where he only has back consonants and substitutes G/K for everything. Something neuro at all.... matters. Or at least is something to pay attention to. Maybe?
Contact your ped and tell them what you are seeing. Also, share that the ST and OT thought it was a concern. If possible, set up an appointment to take him in during the time that he normally twitches to see what the ped thinks of this. Kind of reminds me of benign rolandic seizure or even myclonic seizure description, but you need to have checked by a professional to gauge whether it is normal muscle movement or something more serious.
"seizure"-related were the first things out of his SLP's mouth, which is what scared me so much. She is not trained in that area and was the first to admit it, but still. His Ped hasn't been terribly inclined to listen to me thus far - I had to FIGHT for speech-related tests... I hoped she'd go the distance to ask the OT on site, just so , exactly as said... I'd have more ammo for when I go back to his Ped.
I know that speech & neuro are so closely linked. Right now he is "Articulation disorder". I've asked 100 times about apraxia and nada (albeit the SLP, while I love her, says it's too early to justify an apraxia diagnosis). He doesn't have tongue issues, can blow bubble and circle mouths, definitely has good tongue control (despite not being able to make any front sounds unless forced... But he CAN when really focused) but can make faces, stick out his tongue... he can use it, just not in vocalizing words.
But he is super clumsy. And I don't mean super in a good way (although as a mom, you want to think it's cute). It's not cute. The kiddo falls 24/7. I'd like him to be tested for gross motor again because he scored poorly 6mos ago, it was about 11am when the test was done back then. And he was much younger and couldn't yet jump leaving with both feet, which was the only test and the only "failure". He can now. And he can land with both feet. He can stand on one foot.
But he walks side-ways. And he falls for absolutely no reason. You're constantly thinking...did you forget how your legs work? He doesn't run in to buildings or walls any longer, but he does not walk straight.
We had the SLP appt this morning and she'd forgotten to mention to the OT. She will by our next visit. And I said I'm going to be more scientific in paying attention to How Often, for What Length, about the twitches... and also just his general clumsiness as well.
Maybe if I get something back from the OT I can recommend to his Ped for another evaluation? Or should I call the Ped now?
I do not have experience related to what you are describing, but just wanted to share that in the past when a doctor was dismissive to ME, he was not dismissive when I put my concern like this, "Our SLP has observed xyz and was concerned, and I wanted to check it out with you." Wouldn't you know we ended up with a diagnosis for something I had been asking about for months! So, it might be helpful to put it like that to your doctor. I would also video the twitches at their worst, AND make the appointment in the early morning (AND get him up at the last minute), so when you arrive you have the best chance the doc can see what is going on.
I think the video is a good idea, too. Really, your ped should refer you to a pediatric neurologist, who will want to do a check up including an eeg. You want to schedule the appointment now because it may take months to see a neurologist. If your ped is not listening to you, you might consider taking your ds to another for a second opinion. Keep documenting.