My 6 year old niece had a stroke last Nov. and was diagnosed with Moya Moya. She had surgery last Dec. with Dr. Scott in Boston. Recently she has been having more frequent numbness. My sister was wondering if anyone has ideas or information for helpful diets to increase blood flow or help veins grow. I have no idea if there is anything that  can be done to help her. I know medically the surgery was it and was successful;however, she has extremely small veins so I'm told that's whey the numbness keeps occuring. As you can imagine it's very scary for all of us. She recovers after each episode of numbness but I'm wondering how long before it does damage to her. I know we will get more information when she sees Dr. Scott this Dec. for her 1 year checkup. What a wonderful man he is from what my sister and her husband shared with us. If you can help that would be great.!  ;)

Hi FavAuntie, Welcome to our MM family!

I’m so sorry to hear your precious little niece has MMD. I can never get use to hearing little children suffering through this disease. It always breaks my heart, God bless her, but the good news is, your niece had surgical treatment with one of the best MM specialists in the country. That’s reassuring in of it self.

I’m sorry I can’t give you any special dietary tips for MMD that may help, other than a well balanced diet, but I can suggest that you make sure your niece always stays hydrated and drinks plenty of water to keep the blood flowing through her tiny vessels, especially in the heat like we had this summer. Water maintains healthy cells in the brain. Over 70% of our brain is water, and our natural built in mechanism constricts blood vessels to force the water from the vessels into the cell in order to deliver those vital nutrients and oxygen our brain needs. So a good hydration is vital with MMD to keep the blood flowing through her vessels with those proper nutrients and oxygen. Avoiding caffeine, like in soda can help too, etc.

I don’t know your niece’s specifics, but I do know that time varies from patient to patient for the new blood vessel growth. Hopefully in time she will develope many more new blood vessels. Children are resilient and usually respond very well. It may just take longer because of her tiny vessels.

Please know she will be in our thoughts and prayers, as will you and her family. If we can help in any way, please don’t hesitate to ask.

Mar

Thanks Mar. IT's nice to have a group to talk to about the whole thing. WE are all over the hydration thing. I think she thinks I'm a pain with it  when she's with me but it certainly helps.  The hospital here was baffled with what happened to her. They did not have any experience with such a rare condition but once it was all figured out they were great at working with Boston.  The  hospital here actually just called my sister and family to ask to present my neice's case at an international conference for neurologists. We think that's pretty neat although her name won't be used.
Thanks for your support. I remember looking at this site for information when she was first diagnosed and just have gotten around to getting hooked up with it.
God bless you all as you deal with this rare condition!

Hello, and welcome.I'm sorry you niece has to deal with this disease but this is a great place to find support and information.My daughter was diagnosed at 5 yrs old,she had surgeries with Dr.Scott.She's now 9 yrs old and doing great, even though she was very unstable at the time of her surgeries,and suffered many strokes.I tell you this to give you confidence in the surgeries.As others have said it can take longer for some to get the maximum growth of the new vessels.My daughter also has Down syndrome, this can make for very small vessles also(we had a really tough time with IV's).I'm sure your very diligent about the hydration,we get a little obsessive about it too,Kathleen wasn't much of a drinker especially water.Also Hyperventilation which can come from overexertion, crying and laughing.Have you asked Dr. Scott aobut this new development?He's such a great guy about answering any questions.It may just put your mind at ease or he can bump up the yearly check for you.Just a thought.Please keep us posted,and if you have any more questions just ask away.Many prayers for your niece.She's lucky to have such a caring aunt.
Mary Grace

Hey by the way I just noticed that your from NY,We live just outside of Albany NY.How far away are you?
Mary Grace

Thanks for the info. It's reassuring to hear from people who have had years to get better after the surgery.I will pass the info onto my sister. I think she's quite overwhelmed with everything.  We also lost our Dad to Alzheimer's this year (My mom and dad live(d) in an apt. at my sister's house so that stress was already there before her daughter had the stroke).  I am near Rochester and my neice is not too far from me.  
I just attended a 60th birthday party for a cousin of mine who has Down Syndrome. I am a special ed/deaf ed. teacher and I have to say have always loved Down Syndrome kids. How blessed you are!!! THanks for the prayers. I will also add everyone with MoyaMoya and their families to my list.