Does anyone know of a good site for info re sturge-weber syndrome or have any info they could share. Dr just said very small chance as condition is so rare but mentioned it as nothing is really making sense with our little man. They said a lot of his issues fit with the syndrome, but he doesn't have the large port wine stain on his face which is common with all but a small % of those have SWS, has a smaller one on the back of his head near hair line and a small one over his right eye lid, you can't see it unless he has his eyes closed.
We have been told they are going to keep monitoring and see what his next MRI says and do more testing before they can rule out SWS.
We have been told they are going to keep monitoring and see what his next MRI says and do more testing before they can rule out SWS.