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http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl Moyamoya Related Topics >> Moyamoya Related Information and Support >> emily has moyamoya http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332210640 Message started by Carey on Mar 19^th, 2012 at 10:30pm

Title: emily has moyamoya
Post by Carey on Mar 19^th, 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

Title: Re: emily has moyamoya
Post by hrsridermom on Mar 20^th, 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

Title: Re: emily has moyamoya
Post by pritzlm on Mar 20^th, 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! :)

Title: Re: emily has moyamoya
Post by Dawn on Mar 20^th, 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

Title: Re: emily has moyamoya
Post by Lmom on Mar 20^th, 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

Title: Re: emily has moyamoya
Post by mg12061 on Mar 20^th, 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

Title: Re: emily has moyamoya
Post by Dawn on Mar 20^th, 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

Title: Re: emily has moyamoya
Post by Dawn on Mar 20^th, 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

Title: Re: emily has moyamoya
Post by Lmom on Mar 21^st, 2012 at 8:17am

Her Bday is April 13! I will email you.

Jody

Title: Re: emily has moyamoya
Post by Carey on Apr 21^st, 2012 at 11:25am

It would be nice for emily to email both of your daughters! My email is arwenjinn@aol.com

Title: Re: emily has moyamoya
Post by Lmom on Apr 22^nd, 2012 at 2:42pm

HI Carey - Lina said she will email your daughter this afternoon. I gave her your email address!

jody

Title: Re: emily has moyamoya
Post by Dawn on Apr 24^th, 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