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aneta
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Chicopee, MA
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hello
Jul 23rd, 2009 at 1:26am
 
Hi everyone i am new to all of this...my doughter Nicole is 6 years old and diagnosed with MMD june 26 2009...She is scheduled for an angiogram on july 27 and the surgery on the 31 with dr Smith at Boston Children Hospital...I feel overwhelmed.. Cry
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Nicole Kawasaki Disease 18 mo
Nicole diagnosed with MM 6-26-09
 
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Little Luca
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Whatever it takes

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Somerset West, South Africa
Gender: female
Re: hello
Reply #1 - Jul 23rd, 2009 at 4:11am
 
Hi Aneta

Overwhelming is an understatement.....

Welcome to moyamoya.com. You are at the beginning of a very long journey but you are off to a great start believe it or not. Too many people take too long to get diagnosed and the fact that you already have surgery booked so soon is very encouraging. You are also at the right hospital being treated by the right doctors.

Surgery is the definitive treatment for moyamoya and you'll find many survivors here who have experienced exactly what you are going through.

I don't doubt that you have many questions, so when you feel like asking I'm sure we'll have the answers.

Look after Little Nicole and keep us updated.

Mark (Luca's Dad)
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1st stroke in September 2008
Bi-lateral mm diagnosis
2nd stroke in November 2008
Left side surgery in December 2008
Doing just great!
 
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Danielle
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3 year old daughter with
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Posts: 71
Michigan
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Reply #2 - Jul 23rd, 2009 at 8:51am
 
Aneta, I couldn't have said it any better. She is in good hands at Boston. I jointed this site well after my daughters surgeries and wish I would have found it sooner. I have learned so much and every time I check it out it makes me feel better. Feel free to wright back with any questions. Also keep us posted on the angio and surgery. We will pray for you and Nicole. Good Luck. Danielle
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Positive thinking is key!
 
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aneta
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Chicopee, MA
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Reply #3 - Jul 23rd, 2009 at 1:41pm
 
I have learned very quickly that time for people with MM is an enemy..this disease is so unpedictable...one day you walk talk and a day later you can be stuck to a whealchair ...Yes..we are in a way lucky to find out and  be diagnosed so fast...Nicole had Kawasaki a 18 mo she came out of it with no compications or heart problems..but I became even more sensitive then probably most moms that kids are healthy to little things ...thank God she didint have a stroke only headaches and few TIA's ..although i know its progressing...her headaches turned this  month into pain that ends with vomiting..Otherwise she looks so healthy and  it is so hard to keep her from running, swimming, activities where she can get tired easy  especially now in the summer..
   Tomorow pre-op visit at 7:00 am..wish us luck  Wink
         Thank you  for your support !!! Aneta
           
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Nicole Kawasaki Disease 18 mo
Nicole diagnosed with MM 6-26-09
 
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Little Luca
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Somerset West, South Africa
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Re: hello
Reply #4 - Jul 24th, 2009 at 3:27am
 
Hi Aneta

Remind me, what is kawasaki?

Thinking of you today.

Mark (Luca's Dad)
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1st stroke in September 2008
Bi-lateral mm diagnosis
2nd stroke in November 2008
Left side surgery in December 2008
Doing just great!
 
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aneta
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Chicopee, MA
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Reply #5 - Jul 24th, 2009 at 5:36pm
 
Hi everyone !! what a hard day ?..and that was just pr-op vist..we have 1.5 drive one way to BCH and appt. was at 7:00 am..but still feel lucky that we dont have to go on the plane.. pr-op went very well Nicole got geen ligh for the  surgery....Monday going back for cerebral arteriogram that will be done by dr.Robertson...must be in the hospital by 6:oo am..I am suprised that she will not stop her aspirin
regimen before surgery...but doctors know better.. right ? Smiley

Kawasaki disease is also disease that affects blood vessel but of the heart..Usually involves skin ,mouth and lymph nodes...can cause  arrhythmias, heart disease , aneurysms and in rare cases heart attack in children before age 5.. Nicole was treated with gamma globulin and asiprin...we also followed-up with cardiologist every month for a year..
           
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Nicole Kawasaki Disease 18 mo
Nicole diagnosed with MM 6-26-09
 
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aneta
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Reply #6 - Jul 28th, 2009 at 12:33am
 
Nicole went  through her cerebral angiogram today like a trooper..loved her cotton candy smelling  face musk:) she kept her leg nice and straight for fours after the procedure...I was impressed...Back home without any problems..
  Getting ready for comming friday and following week..Nicole's surgery is this friday 7-31-09 ...Dr.Smith will do bilateral pial synangiosis... Thanks to this site and reading so many positive info im trying not to drive myself crazy and stay positive ..I know it will be one of the worst and  longest days of my life...She is still so little and she and her body already get to go through so much....as a mom I want to tell her it is just a bad dream and i can't...my heart is "bleeding"...
     She will be in the hands o God and one of the best surgical team in the world on friday....

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Nicole Kawasaki Disease 18 mo
Nicole diagnosed with MM 6-26-09
 
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Little Luca
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Somerset West, South Africa
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Reply #7 - Jul 28th, 2009 at 4:26am
 
Hey Aneta

One step at a time... Nicole is doing fantastically well.

I feel your pain, watching our kids suffer is very difficult; all you want is to take the suffering away from them. I know it's hard to believe now, but before you know it this will be a distant memory.

Stay strong for Little Nicole, I'll be thinking of you.

Mark (Luca's Dad)
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1st stroke in September 2008
Bi-lateral mm diagnosis
2nd stroke in November 2008
Left side surgery in December 2008
Doing just great!
 
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Danielle
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3 year old daughter with
Moyamoya disease

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Michigan
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Reply #8 - Jul 28th, 2009 at 11:28am
 
Good luck on Friday. Stay positive. It will be a very hard day for you but it is so worth it. Your daughter is so strong and should not be underestimated. She will do just fine. Lots of Love. Keep us posted. Danielle & Mike
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Positive thinking is key!
 
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joshandmom9770
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Reply #9 - Jul 28th, 2009 at 1:36pm
 
Will be thinking of you on surgery day , my lil man who  is 11 will be having surgery in the next few weeks at Sick kids hospital in Toronto , Ontario, we will find out exact date tomorrow, he  was also just diagonised, and reading some stuff on this site is both helpful and scarey , but we are so happy to have found the site and the support has been amazing , Mich ...Joshs mom
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aneta
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Reply #10 - Aug 14th, 2009 at 8:47pm
 
Nicole's bilateral pial synangiosis is done:) Dr Smith and his team at BCH did a marvelous job...The surgery lasted about 8 hours..Out of the hospital in 6 days..Nicole is doing great!!! If not the scars on both sides of her head and limited activities its very hard to recognize that she went through sooooooo much...We are very proud of her.. Thank you all for all your prayers and support..Thank you God for doctors like dr. Smith..
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Nicole Kawasaki Disease 18 mo
Nicole diagnosed with MM 6-26-09
 
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Twyla
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Re: hello
Reply #11 - Aug 20th, 2009 at 7:09pm
 
Your family is in our prayers.
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aneta
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Reply #12 - Sep 2nd, 2009 at 8:56pm
 
Hi everyone ,
a little update on Nicole ...it has been a month after  the  surgery and shes doing just great...went to second grade with all her friends...we are soo happy and glad that it is all over...we are praying  that she will recover and progress to her health as beautiuly as she does now...God please no more pain suprises and drama !!!...love you all...thank you for prayers..
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Nicole Kawasaki Disease 18 mo
Nicole diagnosed with MM 6-26-09
 
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yunnanababy
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Indianapolis, IN USA
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Reply #13 - Sep 12th, 2009 at 8:20pm
 
Nicole,

Dr. Scott in Boston is the first physician who took me seriously when I suggested that perhaps all of my daughter's symptoms pointed to MMD.  Dr. Jodi Smith, who trained as a fellow with Dr. Scott in Boston, is scheduled to perform my daughter's surgeries in October.  It does my heart good to read that your daughter is doing so well after her surgery.

Best regards,

Jennifer
Mommy to a 6 y/o with MMD
www.caringbridge.org/visit/rubymaejingli
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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
WWW 1422039771&ref=profile  
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aneta
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Chicopee, MA
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Reply #14 - Feb 28th, 2011 at 12:06am
 
just an update on Nicole:)
it has been a year and a half since Nicole's surgery...Nicole is doing fantastic...even though her moyamoya progressed as her angiogram showed in Dec. of last year  her new blood vessels are doing an awsome job in supplementing bad ones...we just had second mri ...nicole can go back to play sports ...no more new strokes which is great news ....Nicole still complaints about headaches a lot and her blood pressure is little on a higher side but other then that she looks and acts like a perfectly healthy kid ...thank you for everythig good bless everyone ...we are looking farward to a meeting in Philadelphia ..hopefuly will be there  Wink
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Nicole Kawasaki Disease 18 mo
Nicole diagnosed with MM 6-26-09
 
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