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2 Year Old with Moyamoya (Read 225 times)
Allensw
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2 Year Old with Moyamoya
Mar 8th, 2020 at 3:48am
 
Hi Everyone,

My daughter is 2 years old and we found out she has moyamoya from a MRI. She's never had a stroke and we did an MRI because she has NF1.

I guess NF1 was a blessing in disguise since it led us with the moyamoya diagnosis before a stroke.

I'm located in Toronto, and we just met with the stroke team there. They advised us that for now, her condition seems minor, but she'll need to take 1/2 an aspirin daily. They also told us that they dont think she needs surgery but they'll monitor her with MRIs annually.

I guess I'm a little confused since everything I've read so far insists that surgery is necessary. Are they telling me this isnt the case because shes so young?

Can anyone else who had experience with Sick Kids in Toronto PM me? I'd love to learn more about your experiences with the hospital. Thanks so much!

Allen
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njusa
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Re: 2 Year Old with Moyamoya
Reply #1 - Mar 8th, 2020 at 1:30pm
 
Hi AllenSW,

I've got a 6 y.o. girl with NF1-related MM in NJ, USA and I totally know how you feel about the "blessing in disguise". The child is seen at CHOP for NF1 who don't like annual MRI's for NF1 (unless there are symptoms) and MM was only incidentally picked up on a brain scan 3 years ago due to concerns over unremitting headaches. Since then she's had the EDAS op on the left hand side (Dr Feldstein at NYP) and all is well so far. NYP also won't operate on the right hand side but just monitor it and hopefully that won't get worse. Part of me wishes they could just operate on that side too and get it over with, but I know the reality is that unless there is some significant lack of flow, the operation itself is pointless!

On your question; they've done the EDAS op on even in utero babies, so I doubt its due to age. Is she being seen by a MM specialist at Toronto Sick Kids? As long as thats the case I'd see little to worry about at all. Our CHOP Doc told us the NF1-related MM cases are a little different and the probabilities change significantly although she was clear that there wasn't much data around it. Generally, Toronto Sick kids will have seen quite a few cases like this though so you can feel safe in their hands. If you wanted additional peace of mind though you can easily get a second opinion from Boston Children's Hospital for $500 who are the apex clinic for pediatric cases. Personally though if my child was being seen by a pediatric MM specialist at Toronto Sick Kids I wouldn't bother (I appreciate thats easier said than done with a new diagnosis).

Good luck with it all; once you've caught it (which you have) and its being monitored regularly by qualified docs (which it seems to be) the prognosis is excellent!
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