Hi Danielle,
Don't blame you a bit for wanting to spare her any more discomfort. It's possible to use any tissue for genetic testing. For the Moyamoya genetics tests done at U of Texas, a saliva sample was requested, though they would accept blood or a plug of tissue as well - I chose spit. You could ask your doctor if he can take a swab of her mouth to test that tissue instead.
I don't know anything about Sterg Webber, but if she should have it you'd want to know in case she has other symptoms that are due to it's influence. Should they find better treatments and cures for it, you'd want your doctor to be on alert so that your daughter could be helped. Just my thoughts. I can only imagine how difficult it must be to make these decisions for your child.
Kim

I was unfamiliar with this syndrome, so I did a quick google search.  I also have a large vascular birth mark that I always wondered about with the MM.  I came up with this website.
http://www.sturge-weber.com/factsresearch.asp

What a great foundation....they have developed a guide for emergency room visits (How great would that be to NOT have to wait for people to look up MM on the net to get a clue)
Also they have quite an extensive document to track medical care, providers, visits, medication, etc.  This includes a place to log seizures, headaches, etc.  What a simple yet extremely useful tool.  Here is a link.  I think I will definitely start using parts of it for my MM!
   
http://www.sturge-weber.com/medical_record_forms.pdf

(I will probably somehow modify it a little to include my blood pressure log.)

Michele

Danielle,

If it is not going to change your daughters treatment then the testing may be a mute point at this time.  It is hard for young children to understand why they are having their blood drawn all the time.  Veins do heal in time so that should get better as long as her veins have a chance to heal. 
Did you ask if the genetic testing would require blood samples or if it could be done with a mouth swab?  The mouth swab would be less invasive.  If not then maybe you could wait until she has to have blood drawn for other tests and then have the genetic testing done at the same time.  I would ask the neurologist why he/she felt there was a need for genetic testing at this time. 
Good luck, I know you will make the best decision for your daughter.  Mom's do know best!!!

Tracie

Thank you everyone for the great advice. From what we have been told there are no known links between Sturg Webber and Moyamoya. Adriana's eye doctor was the first person to bring it up. He is an amazing eye doctor. I then brought it up to our neurologist, and from all the MRI's and angios he does not think she has Sturg Webber. So then he suggested the genetic testing just to be sure. So now I feel like I opened a can of worms. I am worried about it even though it will not change her treatment. She has already had surgery done on both sides of her brain. I am leaning toward the testing though. Just to ease my mind. I am going to call on Monday to find out exactly what they will need from her. I do feel like it wouldn't hurt to just go talk with them anyway. Insurance will not cover it but oh well. She is our million dollar baby! Ha Ha. Thanks again Danielle

Well I took Adriana today for the genetic testing. They ruled out Sturg Webber but now suspect Williams Syndrome. I was able to Email Dr. Stienbergs group to find out if there is any link between Williams and Moyamoya. They do need to draw blood but we are going to wait until they draw blood for another reason down the road. There is no rush to know right now the Dr. said. Just thought I would give you all an update. Any feed back would be great. I wonder if anyone with MM also has Williams Syndrome? Thanks, Danielle

Another update, We finally have the results from genetics. They tested all her chromosomes and they were all normal. No abnormalities. I was very surprised. The best news is they think we could have more children and not pass MM on. Adri is our first and we don't want her to be an only child.