Hi Mamma Kat

Luca also experienced the 'soft spot' on her skull but not the headaches (well, not that we know of anyway).

Her 'soft spot' was caused by cerebro-spinal fluid escaping through the holes in her skull (from surgery) into the space between the skull and the skin, causing it to bulge. It's called a pseudomeningocoele. The important thing is that it stays quite soft, indicating that the pressure isn't excessive. Given time (months), this should resolve itself. It can fluctuate depending on the persons state of health and mind. When Luca used to get upset and cry, it would blow up like a balloon, and also if she got sick. In Luca's case, the Dr placed a tube subcutaneously from her spine to her stomach to help drain the cerebro-spinal fluid, but I think if we weren't needing to travel so far to get home, he probably would have suggested we just leave it to resolve itself. Luca's soft spot appears to be behaving now and we haven't had it blow up for quite awhile.

This is by no means a diagnosis of what's going on with your son. If you are concerned, the best advice comes from a moyamoya-wise doctor.

Stay strong and keep us updated.
Mark (Luca's Dad)