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new here (Read 2706 times)

tammy66 New Poster Offline I Love MM.com! Posts: 24 pittsburgh,pa Gender:	new here Dec 8^th, 2009 at 7:20pm hi, new to the board. my 8 year old daughter just diagnosed.we live in pittsburgh pa
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Lore

MM.com Benefactor

Offline

My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: new here
Reply #1 - Dec 8^th, 2009 at 8:09pm

Hi Tammy and Welcome to the MM Family!

Sorry to hear about your daughter's recent MM diagnoses. How is she doing?

You have come to the right place to learn about MM the disease. There are many children, like your daughter, in the MM family who have traveled this same road. Perhaps they will see your post and share their stories with you.

The MM family is a super group of people who are here to support you and your daughter so please ask any questions.

Again, welcome!

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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Lmom

Junior Poster

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I Love MM.com!

Posts: 53

Re: new here
Reply #2 - Dec 8^th, 2009 at 9:46pm

HI Tammy,

My 8 year old daughter has MM too. She has had two surgeries (May 09 and June 09) and is doing great now. She's back in school and having some issues with that, but her surgeon said her most recent angio looked great. We live in KS, but our surgeon is in Texas. You will get great answers if you post your questions on this board. Did your daughter have a stroke?
Jody

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Little Luca

Senior Poster

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Whatever it takes

Posts: 346
Somerset West, South Africa
Gender: female

Re: new here
Reply #3 - Dec 9^th, 2009 at 1:41am

Hi Tammy

Welcome to moyamoya.com. I have a two year old daughter who was diagnosed and operated on at the end of last year. She suffered a couple of strokes before getting a bi-lateral diagnosis - this means she has it on both sides of the brain - her left being much worse than her right. She's had a bypass operation on her left side which appears to have been succesful and we're monitoring her right. She's doing really well and trying hard to recover from the residual affect of the strokes - she's been left with weak eyesight and legs.

I'm sure you have a lot of questions, and when you're ready to ask, you will find the support you need right here.

Stay strong
Mark (Luca's Dad)

1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!

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mg12061

Old-Time Poster

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Posts: 946
Albany, USA, usa, 492, 84, NY, New_York
Gender: female

Re: new here
Reply #4 - Dec 9^th, 2009 at 11:47am

Welcome to the group. Sorry for your daughter's diagnosis but your found the right place to get support and great information. My daughter was diagnosed at about 5yrs old. She had her surgeries 7 yrs ago with Dr. Scott at Boston Children's hospital. he is listed here as one of the top specialists and not too far from you.We live in NY so we didn't have far to travel either.He was wonderful and is always ready for a consult on this disease.The best advice anyone can give is to be sure to find a specialist when dealing with moyamoya, someone who deals with this disease daily. Please feel free to ask any questions there's always someone here ready to answer or just lend their support. How's your daughter's health? has she had a stroke? We'de love to hear more about her circumstances if you care to share. many prayers for your family,it's a difficult road but your not alone.
Mary Grace

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yunnanababy

Experienced Poster

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My daughter had her surgeries
in October 2009

Posts: 137
Indianapolis, IN USA
Gender: female

Re: new here
Reply #5 - Dec 9^th, 2009 at 12:33pm

Hi Tammy,

I'm glad you found the website, but sorry that you need to be here.

My 6 y/o was diagnosed with MM in May 2009 after suffering from its symptoms (and several misdianoses) for 2.5 years. She had 2 indirect bypass surgeries in October 2009 and is now back to school & doing great. She's migraine-free and will have an angio next year so the surgeon can see if the procedure was successful - we have every reason to believe that it is.

I think someone mentioned Dr. Scott in Boston in a previous post. He is a wonderful man & was instrumental in helping me get the right diagnosis for my daughter. If you are uncomfortable with the level of expertise your daughter's physicians have with Moyamoya (there are so many out there who don't really have a clue about this disease), I strongly recommend contacting him. He will help you.

Best wishes to you & your daughter. If you have questions and post them here, you will get feedback from this great group of folks.

Take care,

Jennifer

Mom to an 9.5 y/o ballerina/guitar player with MMD & an 11.5 y/o gymnast/cross country runner/swimmer!
www.caringbridge.org/visit/rubymaejingli

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