immediate help/attention??? - Vascular Birthmarks Foundation Forum
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View Poll Results: Am I over-reacting?
Yes -- waiting a few days is fine 0 0%
No -- get help asap 1 50.00%
You would do the same 0 0%
Calm down, this is typical of these types of issues 0 0%
My child had the same thing and she will be okay 1 50.00%
Voters: 2. You may not vote on this poll

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  #1  
Old 02-24-2007, 09:19 PM
kck kck is offline
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Join Date: Feb 2007
Posts: 6
Default immediate help/attention???

hello,

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:
quick recap:
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?
OR....

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?

thanks

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)
Attached Images
File Type: jpg day16-eye.jpg (45.4 KB, 53 views)
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  #2  
Old 02-25-2007, 01:03 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default

I emailed a reply to you just now. Please be pushy with the doctor offices...waiting more than two weeks is not acceptable if the lesion is growing, near the eye or other health concerns/symptoms are present. PHACES is a complex group of syndromes... prednisone might not be the route your doctor chooses...it depends on other medical issues and the growth of the lesion. If the lesion is growing she needs to be seen soon!!! I also sent my phone number if you would like to talk.

Hang in there!!! Just fight for that appointment ASAP!

Corinne
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