Hey guys, I need your help. My husband and I are feeling overwhelmed. A few days ago my 20 month old son had a major askeemic stroke which left his right arm and leg with limited mobility. After a MRI/MRA late last night we were told he has a disease called MoyaMoya, hence the reason I am here. We are shocked and terrified. Can anyone give me any information or good web-site/books so I can educated myself? Thanks guys!

I'm so sorry you had to find us but welcome...This is a very caring, informative, and supportive group.Your doing exactly what you should...become as educated as you can about this disease. I think you will get some very helpful information here. The first thing I think everyone would agree on is to contact a MM specialist. We personally saw Dr. Scott in Boston. A specialist would be someone who deal with this daily (not jsut a few cases). Another specialists would be Dr. Steinburgh in California. If you navigate through this site you will find some great stories, names of specialists, and links with good true information. If you have some specific questions ask aways there's usually someone who has experience with whatever it might be. No queston is too small or unimportant.
   8 yrs ago we were exactly where you are now. Our daughter was 5 yrs old and was born with Down syndrome. she suffered a stroke and was quickly diagnosed with MM. Our heads were spinning and we were petrified for her future. This site didn't exist so we really had no one to talk with or hear personal experiences. We imediatly contacted Dr. Scott. She had surgeries a couple months later. It's been 8 yrs and she's had no strokes since ehr surgeries. Please feel free to ask questions.
Mary Grace
mgrace5@nycap.rr.com

Ditto what Mary Grace said. When I was diagnosed there was no resource, no nothing out there on Moya Moya. Where are you located?

We are in Chicago. Our heads are spinning and we have no
idea what to expect. They are currently trying to to figure out where to transfer too. Has anyone had any experience in Chicago? Please help!

Erin, I'm glad you found this place!  I'm in Chicago and my daughter Polly had great care at Children's Memorial Hospital with Dr. Alden.

Hope to talk to you soon,

gillian

Hi Erin. Sorry you had to find this, but glad you did. We live in Pa and traveled to Boston Childrens. Dr. Smith did her surgery. He and his team were amazing. I would highly recommend speaking with them, even just for a second opinion. Again, so sorry you have to be here, but you will find lots of caring people who can help a lot!
Pam

How is your son doing? Been thinking about your family and keeping you in my prayers.
Mary Grace

Malachi is doing great. He is recovering quickly. His leg is 95% back and his arm is about 50%. We are currently talking to Dr. Scott about going to Boston to have him do the surgery in june. What has everyone's experience been with him?

My experience with Dr Scott is very good. I consulted with him by phone when I was first diagnosed and he agreed to look at my films. He told me right off he wouldn't take me on because I was an adult, but he helped guide me in the right direction.

Hi Erinmom2

I'm sorry to hear about your little boy. Late 2008 my 10 month old little girl had a couple of strokes and bypass surgery on one side of her brain. She is still dealing with the effects of the strokes, one being quite bad, but she is doing exceptionally well and we've had no signs of moyamoya since surgery.

Moyamoya is a lifestyle disease. By this I mean we'll all be dealing with it for the rest of our lives by having to monitor, hydrate, take medication, etc, etc but it is by no means a death sentence. With the proper treatment, which in most cases is surgery, and the correct post surgery management, there is no reason why your son shouldn't lead a long and fruitful life.

You are doing the right thing by seeking out the advice of someone with moyamoya experience and Dr Scott is one of those specialists. My advice at this stage is just don't wait too long before he can assess your boy, get him chacked as soon as possible.

In the meantime keep him well hydrated. Luca (my daughter, who is now also 2 years old) drinks loads and loads of diluted juice through the day. We make sure there's always a bottle available to her.

If you could email or pm (private message) me your email address I'll forward you some literature on moyamoya.

Good luck and all the best to your Little Man
Mark (Luca's Dad)

I just recently found this site too and I have to say that it has calmed my fears and worries. I think for the most part at the beginning I was confused and scared because I had never heard of Moya Moya. I t sounded like a island in the South Pacific, not a disease. But from reading this, I feel much better on my outlook on life.

Mayhem wrote on Apr 20^th, 2010 at 8:14pm:

He told me right off he wouldn't take me on because I was an adult, but he helped guide me in the right direction.

I was 29 when Dr. Scott did my surgeries at Children's of Boston (a little over 7 years ago - can't believe it's been that long!).  He sees adults up to age 35. 

Dr. Scott is wonderful - I posted more details on another thread.  Your son couldn't be in better hands!

Good luck!

-Shari

It has been a year since my now 12 year old got the mm diagnosis , and this site helped me tremendously, answered my questions and calmed my fears, as i am in Canada i can not help but offer an ear and a prayer .If you need to talk please email me . wILL BE THINKING AND PRAYING FOR YOU AND YOUR FAMILY.