Brave dude

About 4-5 months ago J started having visual episodes where items in his vision changed size abnormally and unexpectedly. The episodes didn’t last long, but when they happened they were scary, upsetting, and unsettling for him. Eventually we saw the pediatrician who sent us to an ophthalmologist. J’s eyes checked out healthy. He then sent us for an epilepsy test. J tested negative for epilepsy. The test was a killer though — he’s only allowed 5 hours of sleep the night before, then we had to send him to school where he had a performance, we then picked him up for an exam where they flash strobe lights on him, and eventually wait for him to sleep so they can monitor brain activity in a variety of states. Last-up, he had an MRI (which they do for kids at 6:30 am!) — an hour in a closed MRI machine head first. The kid was a total mensch about all of this — cooperative and brave. He seemed thankful we were all attending to this thing that was so scary to him.

In the end, we’ve learned that Jonah has a condition called Alice In Wonderland Syndrome. The neurologist said to think of it as a visual migraine. He is a-typical in that there isn’t some clear trigger (fever, sleep deprivation, bad diet, etc). It is very typical to have this start around 8 or 9 years old, and it is likely that it will disappear forever at some point in his teens.

After the MRI

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