Next step now eye test has come back normal? Visual/facial tic in toddler

[BedHanger]

I've posted about 2.5yo DS1 before, so apologies if this sounds familiar. The outcome of my previous thread was getting him referred to opthamology. We were there yesterday and apart from a normal amount of long-sightedness, there is nothing going on.

Basically, many times a day he stops what he's doing, tilts his head slightly, narrows his eyes and looks down and to the left, while grimacing a little. He doesn't respond to his name while he's doing it, although I think he responds to fingers in front of his face (always takes a few seconds to react and get over to him so he might just have finished by the time I get there).

While he's not doing this he is very sociable, has good eye contact, shared attention etc. He had a very slight delay in with his speech - didn't start at all until 24 months - but now I would say he's slightly ahead if anything. He does quite a lot of parroting lines from TV shows, but he uses the phrases in context so he obviously understands them. I've noticed that he doesn't use yes and no very much, and doesn't nod or shake his head. A local drop-in SLT has spent some time with him and says she would be happy to take an HV referral to "reassure" me - he's interacted with her very nicely.

Aside from this, we have ongoing issues with sleep (currently early waking), and constipation/withholding, which is being treated with a low dose of movicol.

I would really appreciate some advice on next steps. Presumably the SLT referral is worth pursuing? Should I also be going back to GP post-eye test? What for?

Apologies, used the word slightly far too often there!

I would suggest a repeat trip to the GP, but if you can, take along video of these episodes (several examples if you can). If it is happening several times a day, this should be possible.

I don't want to alarm you, but while what you are describing could be a complex motor tic, it could also be seizure activity. A lot is lost in description and interpretation, but if the GP sees the motion for themselves, they will know better where a referral might be wise.

Bee has had seizures her entire life - and the convulsive ones are actually far less common than others. When she was hospitalised for long term monitoring (5 days) we learned that she had more activity than we realised, but more importantly, were able to tease out what movements were tics and what were seizure activity - it was eye opening. Interestingly enough, the movement that everyone thought was seizure-related turned out to be a tic, but several other we thought were behavioural turned out not to be.

I am not saying your DS has epilepsy - but the bit you mentioned about maybe not responding makes me think it might be wise to rule it out. Bee's seizures can be very brief (3 -10 seconds) so it is not impossible.

Even if the referral is just for reassurance, it is peace of mind, right?

Agreed, go back to go with film. Ds2 has Tourette's and tics a lot. He is never unresponsive with it, though....

Well, just to confuse things, my dad made a loud noise during one of DS's episodes and he reacted .

Is it possible to develop Tourette's at such a young age?

I have taken a few good videos.

I can't say for sure about Tourette's at his age, but complex motor tics can occur outside of Tourette's as well (Bee doesn't have Tourette's, but does have tics). Even if it is not common for Tourette's to have that early an onset, nothing is impossible.

With regard to your father being able to distract him during an episode, did he "snap him out of it" at the beginning, in the middle or at the end? It does make the possibility of epilepsy lower, without a doubt, but doesn't eliminate it... Bee is aware at the end of one of the types of seizures she has, but cannot speak.

I am glad you have videos - I hope the GP is receptive and can help you get to the bottom of it all.

Thanks Bee - tbh I'm not sure at what point dad was able to snap him out of it. He does seem to do it more when quiet or bored - many, many times during our long wait at the hospital, for example. Not at all when running around in the park. I will get some more videos in different contexts, I think.

DS1 has been dx with TS at 5. This is an early dx. He started motor tics about age 3.5 and vocal tics much younger.
However not all tics are TS.