Daughter has a PWS isolated on her upper left eyelid along with a small PWS on her nose.
I am wondering who to believe when I read contradicting evidence on SWS/Glaucoma when eyelid is involved.
VBF site says the following: "Various experts’ report that nearly 50% of all infants diagnosed with a port wine stain on the eyelid will be at risk for glaucoma. Involvement of the upper eyelid has the highest association with SWS"
While the largest study to date on the subject says the following: "All patients with eye or CNS involvement had lesions on the eyelids; 91% of these had both upper and lower eyelid involvement, whereas 9% had only lower eyelid involvement. None with upper eyelid involvement alone had eye or CNS involvement"
Either way I want our daughter screened for glaucoma and SWS but cannot seem to get any help in my area. Can anyone recommend a SWS specialist in Ontario Canada? Our daughter is 6 weeks old.