Hi Lori, I don't know the exact condition but I have heard of a connection with certain eye conditions and moyamoya. Sorry I can't be more specific. Nancy To:...
... visual ... eye, ... for ... Lora, My daughter, Paige, who is now almost 6 yrs old was diagnosed with MMD in early 2006 after suffering a stroke in December...
I noticed under the calendar that there is a parent chat dated to occur on Friday, Feb 22cd. Is that central standard time? Also, how do you join the parent...
Does anyone's child have ocular malformations? My daughter has a visual defect in each eye. She has optic nerve hypoplasia in her left eye (which I have been...
Hi all Just wanted to let you know Chloe had her operation done on her wrist/thumb on Wednesday and it went ok. We are home now. We wont know if it is going...
Hi Laurie Nice to hear from you Dear. Chloe isnt having speech therapy at the moment but i will be pushing for it once we get her hand sorted. We go in...
Hi Allen, My daughter Meadow is 3 yrs. She had 2 strokes at 7 months old, and now has right hemiparesis. She has come a long way with PT/OT. She still does not...
Meadow has moved out of ICU to a regular floor this evening. She is doing really well, and even seems playful today. She had her CVL removed this morning....
Lora, Our daughter Juliana is 6yrs old, and is 2 1/2yrs post/op for Moya Moya. Boston Childrens Hospital, Dr R.Michael Scott is her surgeon there and he is a...
Lora, How is Meadow doing? Just know that we have all been through the same heartache and that you are not alone. And feel free to pour your heart out any time...
Hi Jane, Samantha was lucky and did not suffer a stroke prior to her being diagnosed with Moyamoya. She seems to have no residual affects except for the...
Hello Laurie I havnt spoken to anyone in ages. I guess i just got fed up of all the spam and didnt trust the emails anymore, i hope it gets sorted as...
Hello Lora My names Jane. My daughter Chloe is 9 she was diagnosed with Moya Moya aged about 1. She has had 2 lots of surgery. Im from England but im sure...
Hi my daughter is 9 she takes 1/2 75mg asperin daily. She often is constipated and complains of tummy ache, i wonder if there is a connection ??? Jane ...
My son also had the same procedure done by Dr. Smith who studied under Dr. Scott and She is also wonderful. He had headaches at first and a few TIAs, but now...
Lora, My son had his episodes when he was 5 years old. He had two EDAS surgeries at Children's in DC. It's amazing how fast kids heal. He is 13 now and has...
Dear Lora I completely , as well as the rest of us, understand the stress that you are dealing with. Just keep your head clear, get a great book to keep your...
Hi everyone, I am new to the group. I was referred by another MMD parent. My daughter, Meadow, is currently in ICU at Lucile Packard Children's (at Stanford)....
My son had the same procedure performed by Dr. Scott. He is an amazing doctor. My son was 5 at the time of diagnoses and the local doctors continued to just...
Thank you, Jane, for taking action! My daughter, Samantha, had bilateral revascularization performed by Dr. Scott (yes, we too worship him and his staff!) in...
... Hi everyone i do hope the spam goes as i dont like to use this site anymore because of it. It really helped when Chloe was first diagnosed, its sad that...
I am so glad to hear of the progress, there are a bunch of us that have been in the same situation I will pray for you and your daughter. "R .OTHMAN"...
Hello everyone, I wrote in in 2006/07 because my 12 year old daughter had just been diagonised with moyamoya and this site was wonderful in supporting and...
To us also, please let us know if we can help. Nancy McStravick <nancymcstravick@...> wrote: That's fantastic news. It's so upsetting to see all these...
Oh how wonderful!!!! there is life out there and not just spammers!!! Hello everyone AGAIN :) I am Sara, mother to Keith who has a variant of moyamoya that...
Hello Everyone... Im sorry to see this group being attacked by spam. When my son was diagnosed with moyamoya in 2001 I desperately wanted to speak to others...
Thanks Rena. I forwarded this to my sister. She is getting prepared for a trip to Standford and awaiting insurance approval and referrals and Dr Steinberg to...
