K has been struggling quite a bit lately and we are feeling a bit helpless. She reports symptoms to me so often and all I can really say is, “Okay, I’ll make a note of it.” and send her to rest and hope it gets better, unless it is an easy fix like a small headache. She’s suffering and I have no way to make it better, which is incredibly difficult as a parent, so in hopes of changing that I am sharing her symptoms in case anyone in our circles have dealt with something similar or in case it gives someone a light-bulb moment.
- Heavy eyelids (sometimes preceding nystagmus, sometimes not)
- Visual disturbances (wiggling vision: where everything is wavy/squiggly; vibrating vision: where everything is subtly shaking; and distortions)
- GI upset
- hot/cold flashes
- feeling like she is out of it or sedated
- trouble keeping eyes focused
- dilated pupils (though they are responsive if you shine a light directly at them)
- nystagmus (both briefly, and episodes where it lasts for hours; this causes “jerking” vision, which is different than the kinds mentioned above)
So these things are happening, in differing combinations at different times, without any triggers that we can parse out…and then there are the longer episodes that are occurring every 10-11 days, which vary in symptomology, except for the nystagmus which is the constant there so far. Sometimes she is okay and sometimes she is not, and we can’t predict how things will be from moment to moment.
She’s had a quick MRI that was apparently clear and an EEG that did not show and seizure activity (but that only speaks to that period of 20 minutes or so). To my knowledge, the metabolic labs that the ER has taken have come back clear. She’s supposed to be getting a 23 hr EEG, but the orders for that seem to be stuck in as holding pattern. She had a sleep study recently, but I don’t have results for that either.
Here is a video of her nystagmus (if you watch the veins on the eyeball, you can see how it is rotating on its own):
Of course, we are in contact with her doctors and crowd-sourcing is not a substitute for that, but I’d love input from parents or patients who made have experienced something similar and what, if anything, helped.