parentingchildrenwithmoyamoya : Messages : 283-382 of 974

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I am curious... was anyone given any precautions on PE in school for the time period before surgery? Is there ANY limitations for this time period? We go to...	3	Mar 11, 2004 9:29 pm Sara sarabug_99
	2	Mar 11, 2004 9:04 pm RGrace5@... mg12061
My two and a half year old daughter, Emily was playing the Harmonica this evening and suddenly started holding her head,crying & saying "naughty toy". This...	10	Mar 11, 2004 3:18 am mandy harmon harmonmandy
We were told from the beginning it is a progressive disease. I would possible suggest sending scans to Dr. Scott in Boston. I dont think I would wait a few...	3	Mar 9, 2004 10:56 pm RGrace5@... mg12061
Danette, Kathleen was diagnosed Jan.2002.She was four yrs. old(almost 5).She had surgeries at Boston Children's Hospital with Dr.Scott in April 2002.(have you...	2	Mar 8, 2004 8:57 pm RGrace5@... mg12061
Good evening. My name is Danette and my son, Austin was diagnosed today. We had an MRI/MRA two weeks ago for the Moya Moya dx, and it did not rule it out. So...	7	Mar 8, 2004 6:21 pm dmvcpa_drogers
My 15 month old daughter just had two surgeries with Dr. Scott at CHB. We were there from Florida for 20 days. If anyone would like to read about our...	1	Feb 28, 2004 9:52 am marlew47
For those who don't know, Children's Hospital in Boston is having its 2nd "Miles for Miracles" fundraiser in June. It is a pledge walk and a celebration of...	1	Feb 28, 2004 2:30 am Ginny McCarthy xiaoming54
migraines have been reported as a symptom. I know in adults moya moya can cause aunirisims. I was told with my child that blindness was rare with it. Do you...	2	Feb 15, 2004 1:08 am mdkempes@... mdkempes
Hi I have not been able to post because my computer has been down. I am hoping to become a more active member now. My daughter started having strokes at 2 1/2...	1	Jan 17, 2004 4:07 am pmteet@... pmteet
I just wanted to give you all an update on my niece - diagnosed shortly before Christmas. She had surgery with Dr. Scott on Monday and we were very hopeful...	5	Jan 17, 2004 2:28 am dareinhart@... dareinhart
We received an email from Dr. Scott today about our 15-month old daughter, Chloe. He confirmed she has moyamoya and surgery is set for 2/9 and 2/16. He will...	2	Jan 16, 2004 9:16 pm jane wood ginger090177
My daughter, Emily, has Moyamoya. She had her 2 strokes at 18months and her surgery at 22months. She had her first surgery on a Monday and her second surgery...	4	Jan 16, 2004 2:14 pm Nancy McStravick nancymcstravick
Genie,I am so sorry and shocked to hear of this outcome for your niece.How tragic.Please know that I will pray for your family.For the strength and ...	3	Jan 16, 2004 12:20 am mdkempes@... mdkempes
Pam, My daughter Allison is 8. She was diagnosed with Moya Moya last summer and the Neuro-surgeons at Children's Hospital in Washington DC did not think ...	5	Jan 13, 2004 9:08 pm RGrace5@... mg12061
My grandson Xander is 6 and was diagnosed with Moyamoya about a month ago. He hasn't had a stroke but was having severe headaches and had an MRI looking for a...	3	Jan 13, 2004 7:44 pm djkrn2000
First, thanks for all of the supportive and informative messages I have received from this group. I am working to have all of the information about my 14-month...	1	Jan 8, 2004 8:45 am marlew47
My 14-month old daughter, Chloe, had a stroke within the last 7 days and the neurologist found evidence of a small prior stroke on the MRI. They suspect...	9	Jan 2, 2004 12:41 am LONNIE NORMAN lnorman88
Hi everyone my name is jane my daugter Chloe is 5 she was diagnosed with moya moya when she was 1 she had already suffered 2 strokes. she has both left and...	1	Dec 28, 2003 9:30 pm ginger090177
Thanks so much for the info. It's a very scary diagnosis. My mother and I are both RN's and neither one of us had ever heard of this disease. I will plug my...	3	Dec 19, 2003 4:25 pm djkrn2000
Hi. My 5 year old niece was just diagnosed and is scheduled for surgery in Boston on Jan 12. My question is regarding the prognosis of children with this...	3	Dec 19, 2003 2:03 pm LONNIE NORMAN lnorman88
	3	Dec 18, 2003 6:22 pm mdkempes@... mdkempes
Michelle, Thanks for sharing your story. I know from reading a document that Dr. Scott wrote, he has said that Moya Moya progresses. It may progress slowly...	9	Dec 13, 2003 4:17 am Michelle Fredieu michellefredieu
Hi Everyone! My name is Michelle Fredieu and I am from Louisiana. My daughter Cally was diagnosed with moya-moya in late 2000. She was perfectly healthy until...	1	Dec 10, 2003 1:57 pm michellefredieu
If you are looking to slash all your expenses by 75% then you found the right place! This is the television show began. The company whose website is at:...	1	Dec 9, 2003 2:57 am mscagl7
Li, I am trying very hard to figure out how all of this came about for you and your daughter. You said she had headaches and trouble seeing and that she had ...	2	Dec 4, 2003 2:01 am LONNIE NORMAN lnorman88
Dear Friends, I have heard many of your stories and know how grateful we are for Dr. Scott and the miraculous surgeries he has performed on our children to...	1	Dec 3, 2003 4:09 am mdkempes@... mdkempes
Michelle, I sometimes feel guilty that Allison never suffered a stroke or TIA as most children do before diagnosis is possible. I actually stopped emailing on...	6	Nov 30, 2003 5:37 am mdkempes@... mdkempes
Thanks for your email. No, I kept Allison home. I am off work for a few weeks to care for her and we are doing school work at home. We were extremely blessed...	2	Nov 11, 2003 11:53 pm RGrace5@... mg12061
Everyone, I emailed with a few of you back in late August and early September and the information you all offered was invaluable. After communicating with Dr....	2	Nov 11, 2003 7:35 pm dareinhart@... dareinhart

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