Ocular flutter

[Mila_92]

Hey,
it’s a bit of a personal situation mixed into this question but is ocular flutter really that uncommon? I found a paper stating there’s only been like 50 described cases around the globe? Also, I know it can be paraneoplastic, paraifectious, toxin-related… but in most cases it’s idiopathic?

I’m asking because we are currently waiting to be seen by an neuro -ophthalmologist for what I believe is ocular flutter in my 5 month old son. Of course very worried now and being a resident in internal medicine all I know is that it’s not nystagmus.

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[RetinaDude]

I hope someone with peds ophth knowledge jumps in here to help answer your question because I’m not knowledgeable about this at all. Hope you end up with good news with the neuro ophth doc. Have you tried a peds ophth at an academic center? May be quicker to get into than neuro (even though both are in short supply)

 

[Lena Au]

Hi,
so I don't know about the actual numbers but I know that it is pretty rare. I got diagnosed with ocular flutter about 2 years ago and have since then seen a bunch of different specialists who so far could not really help me. In my case it seems to be idiopathic since none of the doctors could find anything else (and believe me they did all kinds of testing with/on me).
I wish you and especially your son the best and am happy to give you more info if you need/want.

 

[Dusn]

Unfortunately most of us don't see 5 month olds very often and "ocular flutter" doesn't tell me anything specific.

But for any intermittent eye movement disorder, try to get a good video of it that you can show the specialist, in case the flutter isn't occurring at the time that you're in her office.

I hope for the best!

 

[idkididk]

No medical opinions here but yes you NEED to have a video of this, because your child could stop having these movements just before the appointments and the specialist could have no idea what you're talking about