To find out more about brain scans, try this link:

http://www.aidsmap.com/en/docs/D408FACC-E42D-49D7-AD58-AD319C08F6C5.asp

And for an explanation of an angiogram, I thought this was good.
http://www.med.umich.edu/1libr/aha/aha_angiogr_car.htm
Hope it helps. All the best,
Sharon

Michelle,

Hi.  My daughter went to Stanford last year for the surgeries.  She was 15 months old, and had already suffered two strokes.   I have to say you will be in wonderful hands with Dr. Steinberg.  Our doctors at home told us that Daphne would not survive her disease, and would probably die within a few weeks; however, thanks to Dr. Steinberg, she is now 2 and a half years old, and has never had another stroke.  Her brain blood flow is 200% better than it was before!

The testing is not that bad.  The worst part is that it takes a lot of time, and she will probably need to get anesthesia to keep her asleep/still during the tests at her age (unless she is very cooperative for her age!).   The brain scan is probably the SPECT with and without Diamox.  The procedure is very much like an MRI, except they are looking at blood flow/oxygenation, rather than structure.  The only difference between the two is that one is with a vasodilator (that they will put in through an IV line), and one is without the vasodilator.   The angiogram is the only invasive test.   They will put her under anesthesia, and insert a catheter in a blood vessel in the groin area and take pictures of the blood vessels of the brain (it is similar to a catheterization for a heart procedure).   She will not feel anything during the procedure, but her leg will be sore afterward and she will have to keep it perfectly still for several hours to prevent bleeding.

I know it all sounds scary right now to you.  Before Daphne went through it, we were increadibly nervous.  But it will be very worth it.  Daphne was very medically fragile when she went through everything a year ago, but she sailed through easily.  All the staff at Stanford are very knowledgeable and experienced, and they will take excellent care of Jennifer.   

Please feel free to email me, if I can help in any way.

Jenny (mom to Daphne.  www.daphnestory.com.  moyer305@comcast.net)