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emily has moyamoya (Read 8595 times)
Carey
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emily has moyamoya
Mar 19th, 2012 at 10:30pm
 
Hi my name is carey and my 10 year old daughter was diagnosed with mm today after a positive mri and mra. She has an appointment next week to meet with dr scott at boston childrens. I joined here to find out more about what we are dealing with
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hrsridermom
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Re: emily has moyamoya
Reply #1 - Mar 20th, 2012 at 7:46am
 
Hi Carey,  Sorry you got that news.  Check in here often and you will get lots of good information and support.  I hear Dr. Scott is awesome.

Donna
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pritzlm
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Re: emily has moyamoya
Reply #2 - Mar 20th, 2012 at 8:28am
 
Hi Carey!
Welcome to the club!  Our 7 year old son was diagnosed in Mar 2011 after a stroke.  He had surgery on both sides in May and is doing well.  You'll get a lot of info and support on this site!   Smiley
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Dawn
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Re: emily has moyamoya
Reply #3 - Mar 20th, 2012 at 8:29am
 
HI Carey,

My daughter is 10 (11 In April as I am reminded daily). She has had 2 surgeries for moyamoya. We are 3 years post surgery and we have had our struggles but she is doing well. She would love to have someone "her age" to Penpal with.(that has moyamoya) Perhaps after your daughter has healed, they could connect via letter or email if she is interested. I have heard wonderful things about Dr. Scott too and have communicated via email with him a few times for consultation. Good luck with your appt next week!
Dawn
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Lmom
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Re: emily has moyamoya
Reply #4 - Mar 20th, 2012 at 10:41am
 
Hi Carey - My daughter is 10 also (will be 11 in April) and had two surgeries almost three years ago.  She was diagnosed after two strokes.  This is a great website with lots of info!  Good luck at your dr appt.

Dawn - sounds like our girls have a few things in common!  Will you be at the MM conference in KS in June?

Jody
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mg12061
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Re: emily has moyamoya
Reply #5 - Mar 20th, 2012 at 1:13pm
 
Hello and welcome. Sorry you need this group so glad you found it though. My daughter is 15 (she also has Down syndrome) and her surgeries were 10 yrs ago with Dr. Scott. Your daughter iwll be in the best of hands. Keep us posted and ask away any questions that might come to mind.
Mary Grace
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Dawn
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Re: emily has moyamoya
Reply #6 - Mar 20th, 2012 at 7:36pm
 
HI Carey!!

doubt we will be at the reunion this year...would love to go but not in the budget this year!
My daughter's birthday is  April 5...what about yours?
feel free to email me privately at dawnselman@rogers.com
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Dawn
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Re: emily has moyamoya
Reply #7 - Mar 20th, 2012 at 7:39pm
 
Sorry- I just realized it was Jody whose daughter had 2 strokes and will be 11 in April.

Yes.....our girls do have some things in common. My daughter also had 2 strokes but hers were after each surgery. When is your daughter's birthday!
Dawn
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Lmom
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Re: emily has moyamoya
Reply #8 - Mar 21st, 2012 at 8:17am
 
Her Bday is April 13!  I will email you.

Jody
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Carey
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Re: emily has moyamoya
Reply #9 - Apr 21st, 2012 at 11:25am
 
It would be nice for emily to email both of your daughters! My email is arwenjinn@aol.com
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Lmom
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Re: emily has moyamoya
Reply #10 - Apr 22nd, 2012 at 2:42pm
 
HI Carey - Lina said she will email your daughter this afternoon.  I gave her your email address!

jody
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Dawn
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Re: emily has moyamoya
Reply #11 - Apr 24th, 2012 at 5:10pm
 
Hi Carey!

My daughter would love to email your daughter too!! How did your appt go at Boston Children's Hospital?
Dawn
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