Sturges weber syndrome

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Lizbet22's picture
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Sturges weber syndrome

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.
Xxxxx

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Hugs.

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

Lizbet22's picture
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Thanks Margaret.
Xxxxx

Alissa_Sal's picture
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:lurk:
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))))

Nell4Him's picture
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Geez, Liz! I've never even heard of this! I'm praying he's fine.

Lizbet22's picture
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Thanks girls.
It's true you never stop worrying eh? Lol
Xxxx

raingirl28's picture
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Hugs!!

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!

Lizbet22's picture
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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!!!
Xxxx

Alissa_Sal's picture
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Liz, when is your appointment?

Lizbet22's picture
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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.
Xxxx

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Ooooh, that's hard to have to wait that long for answers. Again, I think it sounds like Ed is doing wonderfully and will pass the tests with flying colors, but having to wait would be difficult. Hugs Mama. I hope you hear sooner rather than later.

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I agree with alyssa but that totally stinks that younhave to wait so long! You are in my thoughts!

Lizbet22's picture
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Thanks girls.
It is nerve wrecking,
What will be will be eh?
Another thing we need to think of is whether we will treat the actual stain.
I was of the opinion that it is part of him and he could make the decision when he was older to have it lasered, but I have read that it will get darker,bigger and lumpy as he ages and its best to have treatment by 2.
As the mark is now its nothing and just add to my gorgeous little boys gorgeousness.
But if it gets big and ugly...
Mil has said they will pay to go private and to remove it if we want... I just hate the thought of the pain little man may have.
But what about the pain he may get through bullying and being different?
Whatever happens he is always going to be my dragonslayer ninja.
Guess that's something else to discuss with the consultant.
Funny how no one gas said anything about it getting bigger!!!
It's only google!!
Lol
Xxxxx

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Google can be dangerous! Lol

I'm sure you'll find the answer soon. Physical appearance shouldn't matter, but it does. Sad