5 month old with facial PWS
I am mum to a beautiful 5 month old baby girl with a confirmed PWS isolated to her on her right eyelid and patchy on her forehead and scalp.After the initial distress of the asthetics of the birthmark, my concern has naturally moved to the possible existence of SWS. We have seen an ophthalmologist, dermatologist and neurologist so far and an MRI has been scheduled for when my baby is 7 months old but I'm not even sure we'll avail of it as I'm concerned about a false negative.her first laser treatment is scheduled for Age 1 under GA. I would prefer a LA option as we could then avail of more treatments when she's younger but this doesn't seem to be available in Ireland. Some questions I hope you can help with:-
1. At what age will be MRI be conclusive? Our neurologist seemed to suggest Age 1 so perhaps we should defer?
2. Is there anyone out there who has a PWS on the eyelid and forehead who doesn't have SWS. Although it appears to manifest itself in 25% of cases I can't seem to find anyone despite trawling the discussion boards.
3. In the absence of a seizure what other signs should I be looking for in my baby? She is a lovely smiley baby but quite needy and I do have concerns about her fine motor development (she uses left and right equally)
4. Is laser administered in the UK under LA and does anyone have any idea of costs for a private patient( we can't avail of NHS as we live in Ireland)
Thanks so much in advance,
A worried Mum