I've only been dealing with PWS or Hemangioma or PHACES (as our pediatrician, others on this site have said) ... for 3 days now.
(FYI: the marks are right forehead, to right eye, to right ear --- mostly solid.
a big spot on right head and on spotty spots on back of head, neck)
however, we have not seen a specialist yet (will see one in 4 days).
No test have been done, etc. etc.
I'm all new to this... but this is happening now:
1) at birth -- some signs of marks, etc. a little pink, etc.
2) at 5 days ish.... you can see the birth marks appear
3) at 8-9-10 days.... the deep red color has come in.
4) now the last 2 days... the skin on eye lid is starting to raise or very slightly swell -- if you will --
she was sleeping just now.... it is higher, raised, a little puffy, etc. etc.
compared to unaffected other eye --- yes, it is doing something -- its not just red.
so... she is 16 days old.
I had no idea what any of this means, what it is ,etc. as of 3 days ago.
but my main question is:
do I wait to see doctors in the coming days?
DO I do somethign now... today... asap.
I'm basing the urgency on these thoughts:
1) if it is PHACES --- taking "prednisone" can make a big difference and days DO COUNT.
2) in general sooner is ALWAYS better than later.
3) I don't have anyone to talk to, call, etc. (AT least not yet) --- so yes, I'm thinking the worse.... I'm being proactive.
what are your thoughts?
attached is picture of eye.
that picture is 5 hours old --- she just woke up from nap... it is a little more to the worse than that image (described above)