My husband and I are looking to adopt a little girl from Korea.  We were presented with a  month old baby that seems to be developing perfectly normally but has a sibling with moyamoya.  I am trying to gather information about this disease.  If we adopt her, how early can they test for the disease?  And if they find that she has it then how would they treat it?  Will she have mental disabilities or can she lead a fairly normal life?  any responses would really help us out.  thank you .
Heather

Heather,

Most of the studies show a family incidence of Moyamoya is only around 9% so the chances of the baby also having Moyamoya is very low.

As for testing, I'm not sure how early you would want to test.... it's more something that would need to present itself first.  MRI/MRA could probably be done easily but I personally wouldn't go as far as an angiogram (simply because the sibling had Moyamoya), but then again, I'm not a physician or the one adopting.

This may be something our friend Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (a neuroradiologist from Korea) could give you some more insight on?

In the meantime, there is A LOT of information on (and linked to from) this site.  Read... read... read!

Just my  [smiley=twocents.gif]

Hi Heather! Best of luck with this little girl. From everything that I have read so far, if the mm is caught and treated early enough(before any major strokes or bleeds) then the outcome, especially for children, is usually very optomistic. Read everything you can find on mm. Learn all you can. Good luck!!!  ;)                              Nikki

Hi, Heather.

I am very happy to share my little knowledge with you. As DJ said earlier, the incidence of familial moyamoya is very low, but the literature is only reported in Japanese peoples. In Korea, sorry we cannot have the exact data, however I can see the some cases of familial moyamoya and feel that the incidence is very rare too. Also the chances to have the moyamoya in the siblings are much lower than the mother has the moyamoya.

In Korea, most of the neuroradiologists are familiar with the findings of the moyamoya, so it is no problem to diagnose the disease correctly. The tests of MRI/MRA are enough to see if your baby has the moyamoya. It needs for her some sedations (but, it can be a stress to your child) and you can test in 1-2 years of age if you want earlier to see it before the symptoms(TIAs) develop.

Also, in here most neurosurgeons do not wait for the future developing strokes. If they see the moyamoya, most surgeons lose their patience to wait how it goes further. But I think, the moyamoya kids generally have more potential to adapt their brain to survive than the elderly moyamoya peoples... If your child gets the MM, please consult to Dr. Steinberg or Dr. Scott or Others in U.S. for second opinion.

I think that the MM is not the surgical one even though some cases have markedly reduced blood flows having difficulties to overcome that situation. The next step is that all the folks in this board & all the medical doctors concerning the MM have the key.... and wish to solve the problems together.

I wish you can have more advices from here about your decision making process and I would willingly to join that. :)

And If you want more talks, feel free to call me (my cell phone No. is 018-311-1128)

Thanks.
Jin-Il.

Thank you so much for all of the great information.  After visiting with our adoption agency we found out that the baby  whose brother has MM is only a half brother (same mother, different father) so I think that the chances decrease even more.  We have decided to adopt this beautiful baby girl and know that we have this as a resource if we need it in the future.  Thank you again and best wishes to all of you.  
Sincerely,
Heather

Congratulations Heather!   [smiley=thumb.gif]  We're here if you should ever need us, but hopefully you won't!

Best wishes to you and your new daughter!
Lisa

Great news Heather!  Hopefully you'll have no need to re-visit.   ;)

Thank you for the post Jin-Il!

-DJ

DJ....That was a little contributions comparing yours....

Everyday I tried to enter this board and I feel that this board is more than have something special....Everybody in here is the real family...It's Great [smiley=laugh.gif] [smiley=laugh.gif]

See you all.
Take Care.

Jin-Il.

Congrats on your baby girl!  ;;D

Heath1976,
                  It's a wonderful thing that your doing there are so many children out there that need homes, you are very special people and will be so blessed with your new baby girl. I wish you all the luck in the world you deserve it. Enough that precious little gift.
                                     Nancy [smiley=hug.gif]

Congratulations on your new little girl!!  

-Shari

Congratulations!! Even though you hopefully won't NEED to revisit this sight, feel free to visit just to let us know how you and your new daughter are doing!

Nikki,
          Any idea when or if your Mom is going to Steinberg yet? The Ins. and all.
                        Nancy