My daughter Lindsey who is 22 years old and has Down Syndrome was diagnosed with MMD on March 3, 2010.  We are currently awaiting a call from Bob at Stanford to get her in the system to schedule revascularization surgery on her left side.  We are scared, shocked and anxious all at the same time.  Her doctors here were clueless to her condition.  We were even told by one neurologist that "She is doing this for attention and if we just ignore it, "IT" will go away."  Imagine my anger!! >:(  I just think, what if I had believed him?  Oh my GOD!!  Anyway, this website has been invaluable to me and my husband.  We live in Louisiana and  found a family 50 miles from our home who have a daughter with Down Syndrome and MMD who had surgery two years ago through this message board.  We spoke at length on Friday and we feel much better about the whole process.  ... Thanks for all the postings and the information.

Hi Corinne

Welcome to moyamoya.com.

My blood boils when I hear of medical professionals treating patients like fools. There is another member on this board who's daughter was treated the same way. Her name is Jennifer (yunnanababy) and her daughter is Ruby.

Unbelievable!

Good luck and take care
Mark (Luca's Dad)

Welcome to the MM family. I agree with Mark...what an awful way to treat a patient! I'm so sorry but so glad that you listened to your gut and knew to seek better help.
  My daughter was diagnosed and had surgery in Boston almost 8 yrs ago. she also has Down syndrome(as if that wan't enough right?) She ahd several seriouse strokes but I'm happy to say that she hasn't ahd another stroke in 8 yrs! She's doing wonderful in school and is in a mainstream program and loving it. She ahs some wonderful friends that she's made aloong the way that have supported her and challenged her to do her best. She's my HERO. Throughout this journey she is the one who has had the most strength, determination, and a positive attitude. She has made ME a better person.  I will keep your family in my prayers. The waiting is just exhausting and sometimes unbearable. Please keep us posted....
Mary Grace

Dear Mark and Mary Grace,

Thanks for the comments.  When we were told to ignore it, my mouth just fell.  I didn't know how to respond so I didn't and just figured I would never go back to him again.

My daughter has had several open heart surgeries, she was born with Double Outlet Right Ventricle with AV Canal and Aortic Stenosis.  She is my walking miracle and she also is my hero.  Her attitude and will to live is unbelievable.  She is such a social butterfly and had a job until recently when her symptoms became too much to continue working. We live in a small community and everyone knows her.  We go places and people will come talk to her and I have to ask her "who was that?"  It's amazing.    I'll keep you posted on our progress and yes, the waiting is exhausting.  Thanks for caring.

Corinne

Its so crazy to hear these stories. My son Jonathon complained of right sided headaches from the time he was two years old.  Finally when he was five I took him to a neurologist and they did an mri and told me he had lesions on his brain but said they were nothing. Then they did an eeg which showed slowing of the brain waves on the right side. They told me all along that this was nothing. I kept taking him back because his headaches were so severe and all they could say was maybe I was not giving him his medication right. First of all it was a seizure med which he never should signs of seizure. But I kept on them trying to get them to look into his problems further. They told me he needed to learn breathing technique for his headaches. On fathers day of this year Jonathon had his first stroke at a fathers day picnic with my family. He was took to children's and a couple hours later we were told he was fine now! We told them that we wanted him admitted because it seemed like stroke to us and the doctor looked at me and my mom and told us if they kept every kids that parents thought they had a seizure she would have a hospital full of seizure kids. Needless to say I got my mom out of there without her ripping this womens head off.  I felt so bad to be taking my nine year old home knowing that what we had seen was not normal. Two days later he did it again. And again they tried to turn us away but we refused. We finally found a doctor to listen to us and she admitted him. The next day while getting an eeg they made the mistake of having him blow on a pin wheel and it sent him straight into one. Next was the angio. When they came back they pulled me into the hall and told me my son has a disease called Moya Moya . Jonathon had no blood flow to either side of the brain and that his supply was coming from the arteries to the eyes. Just think if they had listened to me and looked into this sooner the disease would not have got as far as it did it totally distroyed his vascular system.

Bless his precious heart.  Thank goodness they finally figured it out.  Did he have surgery? How is he doing today?

Looking back I think my daughter started with symptoms about 5 years ago, but escalated in the last year.  I'm so exhausted going to doctor after doctor trying to figure out the problems and really they don't take to the time to research the issues.  They just take patient after patient and if you have anything worse than a cold or flu, you are out of luck.

Lindsey is schedule for surgery on March 31, 2010. We will fly up to Stanford on March 24.  I'm really scared but I think I am more scared that she will have a stroke before we can help her.  Please keep us in your prayers.

Thanks so much.

Corinne

Corrine, I will keep your family in my prayers. The waiting is just so hard I remember it very clearly. Every time I looked at Kathleen I would asses her and make sure she wasn't having any signs of stroke. Today is exactly 8 yrs since her second stroke. She woke up that morning and went to open the refrigerator and her right arm wouldn't move. In true form it didn't even faze her she just used her left to do it. We on the other hand freaked. Please keep us posted. ((((HUGS)))) to you both!
Mary Grace

Hi Corinne,

I'm so sorry that you need to be here, but glad you find the site. 

I can really relate to how you felt when you were told to ignore the symptoms.  Mark is correct - my daughter was treated the same way.  When she was 4 and presenting in the Emergency Department with all the symptoms of a stroke, the docs there told me she was faking, to take her home, and not to bring her back if it happened again.  It was heartbreaking and frightening b/c a mom KNOWS when something is not right, and I knew, just like you.

Lindsey is blessed to have you for her mom, & she is in great hands with the Stanford team.  I will keep her & you in my prayers.

Best regards,

Jennifer

Good luck!! My son is almost 2 and was recently diagnosed with Moyamoya. He also had Down syndrome. He is having surgery in Boston with Dr. Scott on June 28th. We took him to 3 different ER's before someone decided to do a CT scan. It showed that he had suffered a massive stroke which should have left him not eating, drinking, talking, breathing or even blinking but he did it all and today nearly 2 months since his stroke he is almost walking (he wasn't walking before the stroke). We know that another stroke is always right around the corner, but we are thankful that these kids are fighters. Good luck with everything and let us know how it goes.