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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › In SHOCK!!!

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In SHOCK!!! (Read 4646 times)

mattsmom

Junior Poster

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My son, Matthew, has moyamoya.

Posts: 59
Albuquerque, USA, usa, 180, 215, NM, New_Mexico
Gender: female

In SHOCK!!!
Feb 18^th, 2010 at 1:41pm

Okay, so we have all talked about the possibility of there being a genetic predisposition to moyamoya.

So yesterday I notice the Facebook status of my sister-in-law is asking for prayers for a cousin. I texted her to ask what is up . . . to make a long story short a 2nd or 3rd cousin of Matthew’s (I’ll explain the exact relationship in a minute) who is SIXTEEN YEARS OLD had a stroke yesterday!!!

I am FREAKING out, thinking there may be a connection to Matthew. I am FREAKING out that this happened again so close to home.

The details, as I know them:
First, the relationship explanation. His paternal grandfather and my son’s paternal grandfather are brothers. Someone who understands degrees of cousins can tell me what they makes them. Wink

His mom (for some reason or other) found him at 3:00 in the morning. One side of his face has paralysis. His speech is slurred, and he having some other issues with speech. I am hoping his parents will call me this morning. I certainly gave my sis-in-law Matthew’s history to pass on to the doctors. They are seeing a pediatric neurologist in Denver (they live in Colorado Springs) . . . but are still heavily in the WHY stage.

I am asking for prayers for Drew please.

Kimber - mom to Matthew, 17, three strokes due to moyamoya at age 7 and single kidney due to renal artery stenosis, Laura, 22, Jacob, 14, and Kay, 10.

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Mayhem

MM.com Sponsor

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diagnosed 1996

Posts: 92
Rochester, USA, NY, New_York
Gender: male

Re: In SHOCK!!!
Reply #1 - Feb 18^th, 2010 at 2:02pm

So, so sorry to hear this. My brother and I both were diagnosed with MM ten plus years ago, and in spite of this, no one has been able to prove a genetic predisposition. Our mom was on the same anti-nausea drug while pregnant with the both of us. My sister, who is the oldest, doesn't have MM, or do her kids, but she was born in Italy and mom didn't have access to those drugs. I'm still waiting for a concrete answer to the genetic question, but it's too late for my brother now.

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mattsmom Junior Poster Offline My son, Matthew, has moyamoya. Posts: 59 Albuquerque, USA, usa, 180, 215, NM, New_Mexico Gender:	Re: In SHOCK!!! Reply #2 - Feb 18^th, 2010 at 2:10pm Wow! You know, the only one I took anti-nausea drugs with was my youngest . . . she hasn't ever had any problems. knocking on wood!! Kim
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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: In SHOCK!!!
Reply #3 - Feb 18^th, 2010 at 3:50pm

Kimber, I saw your post on PSN about this also. It's hard to chalk this up to coincidence when MM is so rare. We have a very strong family history if neurovascular problems ie. Circle of Willis aneurisms, strokes, and what they called "spells"(in the past) that now sound like TIA"S and seizures. It's hard to not think this is all related. many prayers that they get this all figured out.Keep us posted.
Mary Grace

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Mayhem MM.com Sponsor Offline diagnosed 1996 Posts: 92 Rochester, USA, NY, New_York Gender:	Re: In SHOCK!!! Reply #4 - Feb 18^th, 2010 at 5:36pm mattsmom wrote on Feb 18^th, 2010 at 2:10pm: Wow! You know, the only one I took anti-nausea drugs with was my youngest . . . she hasn't ever had any problems. knocking on wood!! Kim My brother was born in 1955 and I in 1964, and back then docs thought smoking was safe for pregnant women.
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Michele

Experienced Poster

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I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female

Re: In SHOCK!!!
Reply #5 - Feb 18^th, 2010 at 6:55pm

You can get genetic testing done for free by the University of Texas. This has been discussed in previous threads on this site. So sorry to hear about this happening to your family member. My first cousin (paternal cousin) also had a stroke and when he went to the Dr.'s and told them I had MM, they supposedly "tested" him for MM and said he did not have it. I have been unable to determine how they "tested" him, but now 2 weeks ago his younger brother, also my 1st cousin, had 2 seizures out of the blue! The second one was a very severe seizure in which he almost bit his tongue off. It took over 100 stitches to surgically have it sewed back on. However, I can not get it through their heads to do the genetic testing. They are in denial in my opinion, even after he spent 5 days in ICU on a ventilator!
God Bless You All!
Michele

« Last Edit: Feb 18^th, 2010 at 6:56pm by Michele »

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Shelbi

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I love YaBB 1G - SP1!

Posts: 21
Trinity, USA, AL, Alabama
Gender: female

Re: In SHOCK!!!
Reply #6 - Feb 19^th, 2010 at 8:52pm

Hi,
My daughter was diagnosed in 2002 with MM by Dr. Grabb at Children's in B'ham, AL. He left a couple of years later to go to Colorado Springs, I read an article about him not to long ago and he was still out there then. But anyway he was an awesome Dr. with a wonderful bedside manner. He was very familiar with MM 8 years ago, so I am sure he has even more experience now. I know that doesn't pertain to the hereditary part but maybe it will help if they need a second opinion from the Dr. they see in Denver.

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hrsridermom Senior Poster Offline mother of 19 yr old daughter with MMD Posts: 292 Tampa, USA, FL, Florida Gender:	Re: In SHOCK!!! Reply #7 - Feb 20^th, 2010 at 8:34am Michele, You have probably posted it before but can you tell me how to contact someone about the genetic testing at Univ. of Texas?
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Michele

Experienced Poster

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I love YaBB 1G - SP1!

Posts: 169
Yankton, USA, SD, South_Dakota
Gender: female

Re: In SHOCK!!!
Reply #8 - Feb 20^th, 2010 at 11:53pm

Quote:

"Milewicz, Dianna M" <Dianna.M.Milewicz@uth.tmc.edu>

"Regalado, Ellen S" <Ellen.S.Regalado@uth.tmc.edu>

Here are the names and email's for the genetic study. I first emailed back and forth a couple time with Dianna with some general questions. She was very prompt in responding! (the next day "prompt"). Then when I agreed that I really wanted to participate, she forwarded my email on to Ellen, the genetic counselor and Ellen emailed the releases and we set up a time to talk by phone. Ellen was an extremely nice lady. Explained everything very well, was patient with my questions. etc. I have since then gotten the DNA collection kit (saliva). Ellen did warn me it would take a couple months for any results. Everything was sent out with prepaid mailers, etc. So, aside from your time, you are out NOTHING! I think it would be great if everyone participated in this! They start with the sample from the MMer and parents. Because of my family history, an aunt and her 3 adult children were also recruited. We will go from there if a gene mutation is present! It is kinda scary to think this mutation might be in my family...but knowledge is power! I truly think this is the beginning of the cure!

Michele

Heres a link to the prior discussion on this topic too!
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1246058737

I hope this helps!

« Last Edit: Feb 20^th, 2010 at 11:53pm by Michele »

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