awww i am sorry that it happened like that, to be diagnosed with moyamoya. I will keep her in my prayers. I would say do not feel bad about not being firm, they are the doctors and we assume they know whats wrong and what best, and now you know she does have it and just from now on be firm and never give up. Its hard to hear that you or your loved one has moyamoya, but remember it is treatable, and if you believe in god, take all your worries and care to him, and he will support you and guide you. I will pray for you and your daughter, just slow down and take it easy, you have to be healthy to take care of her when she gets home,

I know it's easy for me to say but please don't let that mommy guilt get the best of you.You trusted the people you thought knew what they were doing.I think we've all been there at some point only to find out the realization that Dr.'s aren't perfect.I'm so glad you found this group becuase it's full of great information and wonderful support.
  My daughter had several strokes one massive stroke which left ehr like an infant.We spent a month in a rehabilitation hospital and many years of therapy but I'm happy to say she's doing amazingly well.She's wlaking talking reading writting and very happy and determined.She had the surgery on both sides and has not had any further strokes.If you'de like to chat please feel free to e-mail me, I can also give you my phone number.I didn't have other parents to tlak with when we went through this so I know how very scary and lonely it can be.Many prayers for your daughter's full recovery and (((HUGS)))))) to you.
Mary Grace
518-477-2282

I am so sorry for you feel so badly, but this is such a rare disease that alot of Drs don't seem to want to diagnose it. My daughter had her stroke in Apr.08 and if it werent for her continued symptoms she would have went undiagnosed. She was having terrible headaches, vomiting and seizures. In Sept, they finally gave her an Angiogram and after the Radiologist read it and mentioned MMD, we went home and did our homework. 4 days later we met with her Neurologist for her to say "Well Amy don't let this thing take over your life, go home and live life to the fullest". I said "You gotta be kidding, you want us to sit around and wait for another stroke" and she said "We will keep our fingers crossed" WOW, that was hard to take, we went out to the parking lot and called Stanford CA and over nighted all Amys scans and here we are today sitting in an apartment across from the Stanford Hosp. Amys 1st surgery is wed and the next one 1 week later. This is a disease that only gets worse. Hang in there. There are some good drs out there that specialize in MMD. Good luck and I will pray for Kelsey and you!     Christi

First of all, I am so sorry to hear about her stroke and her dx.  But thankfully, she is on the road to recovery.  I hope her surgery goes well.  As far as her rehab, it all depends on her and her body.  Good luck and I will keep you in my prayers.

Linda

We have been moved to a rehab center in Columbus, for kids.  She's doing PT and rehad.  She took 4 steps today.  She's fighting like mad and it determind to walk out of here when it's all over.
The surgery is going to happen after this and we are going to see another doctor in cincinnati to get is opinion.  I want all the doctors I can find.
Thanks for all the love and support!!!