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The good, the bad & the terrifying - info please (Read 3366 times)
Andrews Auntie
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The good, the bad & the terrifying - info please
Aug 11th, 2015 at 1:41pm
 
Hi everyone, I'm brand new to the site. And well, to the world of moyamoya in general. Up until a week & a half ago I'd never ever heard of it.
What happened is is my cousin's son, (he'll be 2 in September, he's still just a baby) he was rushed to hospital as he was having a seizure.
They had to administer 4 different kinds of anti seizure meds before it subsided. After several tests it was discovered that he'd had a stroke. His left arm isn't functioning normally and he is having difficulty swallowing. He is being fed through a tube (he's not a fan) and is having daily sessions with a speech & language therapist. He is improving slightly day by day & is playing  but gets tired quickly & is also more sensitive to loud noises.
He has since been through multiple other tests & they've now come to the conclusion that he most likely has moyamoya (less likely something called mila?)
I've been asked by my cousin if I could find out as much as I can as she is basically living in the children's hospital atm.
I can't really seem to find any layman's explanations for all the questions I type into Google.
The doctors have said that out of the 4 arteries that supply oxygenated blood to his brain, the 2 larger ones are blocked. They've said he will require surgery to bypass these blockages but he'll need a few weeks to a few months to recover from this stroke before they can do that.
What I'd like to know is (there's a few)
- would there be anything (medically/physically) that would prevent him from being able to get the surgery?

- how risky is the surgery? Like the way they talk about it on tv with regards to survival/ complications etc

- what are the surgery success rates?

- what are the long term effects they could expect to have to deal with under the assumption he has surgery & it goes well?

He has had at least one silent stroke previous to this one & as of yet we are unsure about what affect this has had on his development & learning. We are all in such shock as I'm sure you've all experienced. I mean like... he's a baby. I didn't even know babies could have strokes let alone something as serious as this... I thought strokes & clogged arteries were for adults. Older adults at that, whose arteries clogged up over years.
Any information would be very much appreciated. I know I have more questions I just can't brain properly atm with everything that is running through it.
TIA
Regards
Cora
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Heath
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Richardson, Texas
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Re: The good, the bad & the terrifying - info please
Reply #1 - Sep 1st, 2015 at 3:01pm
 
i'm very sorry to hear about your cousin's son's recent stroke.  understand that revascularization surgery has and can be successful in young children.  Our son had his first severe stroke at age two, and had also suffered a silent stroke before that.  Talk to surgeons with experience with this.  The Stanford and Boston people mentioned on this site can help the family with information for the decision.

i will be thinking of the little one.  stay focused and never give up
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'we are all born with a hint of madness--we mustn't lose it'--robin williams
 
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RiverAppa
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Re: The good, the bad & the terrifying - info please
Reply #2 - Sep 7th, 2015 at 12:16am
 
hi, check your PM.
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