Ed has a port wine stain over his left eye and today we had a neurology appointment.
He seems fine from the development point of view.
Smiling, holding his head up, symmetrical movements even flipped from front to back.
But the are still giving him a MRI scan to see if the veins are affecting the brain.
Have to wait for the appointment and like any mum I am so nervous.
He twitches a lot and I am worried its actually a seizure he's having now.
I am pretty sure I am over reacting but I don't know much about it all.
Anyone know anything about the percentage of pirt wine stains being sturges?
I am sure he's fine but because of our history in getting him I am so scared of him being ill.
Here is what I could find for you:
It’s also important to note that if your child does have a facial port wine stain, it doesn’t necessarily mean he will have neurological abnormalities. In fact, only 8 percent of children with a facial port wine stain have neurological problems.
from this website Sturges Weber Syndrome
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Bailey (April 2, 2011)
"The soul always knows what to do to heal itself. The challenge is to silence the mind." Caroline Myss
Please keep us posted Liz. It sounds like your chances of Ed being just fine are great (and I think ALL newborns are twitchy!) but I know that you won't be able to help but worry until he gets a clean bill of health. (((Hugs))))
Geez, Liz! I've never even heard of this! I'm praying he's fine.
Janelle and Brad 8-25-01
It's true you never stop worrying eh? Lol
When I first saw his stain I thought of the same thing. But everything I read is that in most cases it's a more centred stain, with a solid flat line down the centre of the face. I'm thinking he will be fine!
The specialist told us that there doesn't have to be a mark even in some cases.
But the warnings are stain on upper eyelid and temple I believe.
He doesn't seem to have a weakness on either side. He eats well too... Too well!!
So I am hoping!!!!
Just want this damn appointment date already!!!
Liz, when is your appointment?
Don't know yet.
Waiting on the letter.
The consultant said it would probably be between 3 and 6 weeks depending.
Hopefully I'll get the letter before the end of the week.