I'm writing this with a very heavy heart.  My daughter Kelsey was seen in 2004 for migraine headaches.  There was a 'hint' that she might have moya moya but the doctors were hesitant to diagnose it.  

After a diet change to all natural foods she had less and less headaches and was an active child.  She's into volleyball and color guard and typical pre-teen things.

On October 26 she woke up with a horrible migraine and colapsed on the floor.  For some reason, I called 911.  In the ER they informed me she had suffered a stroke!

It's been one week, and we are looking at rehab from the stroke............we are also looking at moyamoya surgery.  Another doctor said she definately has moya moya.

We'll be in ICU at Children's in Dayton, Ohio until we move up to Columbus.  

I'm so lost, sad and very angry.  I almost feel guilty for not being more firm about what the doctors had told me 4 years ago.

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,

We are so sorry to hear that our prayers are with you. Do not blame your self, my daughter had 2 minor strokes and was un diagnosed for 111/2 years they told me it was just breath holding spells, just do your best from here! diagnosis is a large part
Amiee, molly's mom

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

So sorry to hear about Kelsey.   I know how hard it is and you feel so alone.  But now you've found this site and the support is wonderful.  My daughter just had her 6 month follow up and is doing great.  Now that you know the truth, just trust in God and follow your heart to get her the best care.  My prayers are with you and Kelsey.  Feel free to call if you want someone to talk to or you can e-mail me.  My number is 225-205-1685.

Love and prayers,

Margaret

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

I was here about 4 years ago, but when they told me she was okay I kinda went on with life ........so glad you are all still here.
I'm curious about the rehab, how long will all this take?  She keeps asking and I can't answer it.  Her stroke was pretty mild.  Just waiting...............and she's talking about the surgery.  She's such a brave little lady!  She just wants to be all better again.  
Thank you all for being so supportive!!!

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

I am sorry you had to travel that path like so many of us have had to before you. I will pray for you and Kelsey. I am also happy you found this sight and can get the correct information on what there is to do next. Don't blame yourself!! there are alot of doctors that don't understand what MM is even if they have hurd about it. It is the lack of knolagable doctors or doctors that play the wait and see game that is bad. You are here now and WE all have a fountan of knolage to give you. ANY questios please ask and keep us posted.
Becky

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!!!

That's great news!!!! My daughter spent a month in a rehab hospital and it helped us a lot.Sounds like your daughter is making great progress already! Keep us posted.(((HUGS))) to you both.
Mary Grace