Hello there! I am sorry to hear of your small daughter having MM. But you are so fortunate that she has had a diaginose. Anyway, I care for my sister who has severe MM. She is not treatable,,, due to being Downs,, age 54, with other problems. But my brother was just told he has it also. So he and I were comparing things. My sister is VERY sensitive to the light. She keeps her eyes covered if she would go out,,, even on a cloudy day.  My home is kept dark all the time.  Mostly the outside light hurts her the most. As for the headaches,,,, sound just kind of stays inside their head and just bounces around.  She has gotten worse with noise, except for the tv,,, doesn't seem to bother her or my brother.  As for pain,,,, you MUST get something from your doctor. She is currently on Morphine,,,, but she is also a hospice patient at this time. Keep us posted on what is going on,,, she is so young!!!   But,,, thankfully, you have caught it in time to avoid and more damage,  God Bless you and your little one. You will be in my prayers. Sincerely MJS

Tricia --

Actually, we haven't decided yet which surgeon we are going with.   We contacted Dr. Steinberg at Stanford and Dr. Scott at Boston Children's when we found out Daphne had Moyamoya (that was about two weeks ago, after Daphne suffered two strokes in the same week.   Daphne's had a seizure disorder since she was three months old, but they only did structural MRIs and never saw the Moyamoya)

Daphne is all scheduled at Stanford, but Dr. Scott contacted us yesterday and has recommended surgery, too.   Boston is closer, but with Stanford things are all lined up for surgery in early March -- and we don't have any idea of when surgery would take place at Boston as of now.

That is so amazing that your daughter survived so long with severe Moyamoya after having had two strokes!   I have been worried about waiting a few weeks for surgery, after finding out about the MM.   How is your daughter doing now?   Has she had surgery?

Thanks so much for your post.   I feel more convinced than ever that Daphne is suffering from migrains  --- her doctors have kept telling me that she's having reflux, but then again they thought Daphne's first seizures were reflux-related, and I always knew better than that!

Jenny

Kotipup,
              My daughter was mis diagnosed with seizures a year before she had 4 major strokes and was diagnosed with MM, so chances are the seizures have been from the MM. Every case is different and I'm not saying it is definate everyone is totally different alot of times. But there is a chance after her surgery that problem maybe solved.........although people have seizures after surgery also, even years later. I know it sounds contratictury (sp) but hey thats the beauty of this great disease is so complicated. I hope I didn't confuse or scare you more. Mandy didn't have any seizures until 2 years later and has had only one, some don't have any.  Good Luck with everything, your going to the right place thats where Mandy had her surgery, Dr. Steinberg is the one who told us they weren't seizures she was having a year prior. He and his staff are tremedous. My thoughts and prayers are with your family.
         Nancy