Gosh I'm not sure what's going on. My daughter has a very high pain tolerance too. She always tells me "i'm fine" no matter what. Have you e-mailed or called Dr. Scott. he may be able to help you figure it out or tell you what to give him. I know they can take Tylenol because they gave it to her in the hospital avter surgery. Have you tried giving him this to see if it stops. How often does he do this? Has your son ahd seizures?
Mary Grace

Hey

We've been going through the same guessing game with Luca. She is turning 3 in a couple of weeks and thankfully is starting to communicate a lot more which takes the guessing out of the equation.

Two things:

1. Luca does something quite similar. She seems to do it when she is thinking hard or concentrating (like when she's choosing what words to use). Her eyes squint inwards and roll up slightly and she blinks a lot and frowns. This only happens for a moment. It's not something that I'm overly concerned about at this stage.

2. Don't laugh, but is Erin trying to go to the toilet. Luca still sits on her bum, gets this squint, far away look in her eyes as she pushes. She's struggled with constipation for as long as I can remember and she's had moyamoya for most of her life so I'm not sure if the two are linked.

I think if it's pain, Erin will cry.

I hope you find answers

Take care
Mark (Luca's Dad)