Dr Clarks and Dr Metry's findings and recommendations

We received both Dr Clarks and Dr Metry's reports via email yesterday,whcih was good timing since we had Jayda's neurology appt too. Dr Clark told of the findings from the MRA which was that Jayda has several tortuousity of her arterial anatomy, has some anomalous origin of the posterior cerebral artery and some tortuousity of the basilar artery. He mentioned that Jayda does not show any Moya Moya patterns or any other immediate concerns. He said that the aspirin therapy or surgical intervention wasn't necessary based on these results and that future neuroimaging would be needed in the next 6 mths to monitor for any progression.

Dr Metry tells of how healthy and well-developed Jayda is showing no acute distress. She has segmental erythematous and telangiectatic plaques and patches which extend over both sides of her face in an S1 distribution on the right and in an S1 through S3 distribution on the left. She also has scalp involvement bilaterally. Dr Metry mentions that Jayda's bilateral segmental facial hemangioma in the setting of an aberrant subclavian artery,anomalous origin of the posterior cerebral artery and some tortuousity of the basliar artery, means that she definitely meets the diagnostic criteria for PHACE syndrome.

Dr Metry also mentions that there is no need to restart medical therapy for Jayda's hemangioma unless significant reproliferation occurs such that cosmesis becomes of concern. If the lesions remain stable then Dr Metry would expect the hemangiomas to involute well over time with good cosmetic prognosis. However if needed laser therapy may be done before school starts for residual erythema. Dr Metry has said that if we or our doctors have any questions or concerns that may arise in the future we are more than welcome to contact her. She would also like know the results of Jayda's MRA in 6 mths.

We have also emailed Dr Siegel asking for the consent forms to give blood as part of the PHACE registry. Which we will be recieving very soon in the mail aswell as the laboratory forms. It feels really good to be a part of such a good cause and knowing that it will all go to help find out more about this condition.