With all your combined wealth of experience with Moyamoya, I am asking you all how much do I tell me 12 yr old son?  He has only just been diagnosed with Moyamoya last week, after a MRI/MRA of brain for his Neurofibromatosis 1, picked it up.  He has no symptoms of stroke, TIA's or headaches but does have an unexplained hearing loss in his left ear and "weird noise" in that ear and low muscle tone.  I have to start his first dose of baby aspirin asap, so I know that I have to prepare him as he is an astute young lad.
We are heading to a Neurosurgeon in one week, but I honestly don't know whether to tell him the whole story, the expected side effects and possibility or most likely eventuality of brain surgery.
How did you all tell your children?  I would appreciate any feedback.  Cheers.

I'm sorry you and your son have to be going through this.  My son was diagnosed at 16 and there was no doubt at all that he needed surgery quickly.  He is a worrier so I was careful to give him the truth, just not all of it.  I think there is no reason to burden kids with so much, too much.  I would suggest you focus on the positive---moyamoya can be very dangerous, so we need to be grateful that it was diagnosed now, when it can be fixed before it hurts you.  The aspirin is just to help keep blood flowing efficiently.  I would tell him that this is a problem that can be fixed.  The unpleasant part of the fixing is surgery, but the good part is that it can be fixed!  My son was having some pretty substantial symptoms (no strokes) so it was easier to "sell" him that surgery wasn't much of a big deal.

Have you considered sending his information to Stanford for Dr. Steinberg's opinion?  Our local neurosurgeon was unimpressed with his scans, almost saying that he would operate if we wanted, but he thought there was good blood flow.  He had a test before surgery that opened the vessels as much as possible so they could measure the flow.  His moved backward....If your local neurosurgeon has no experience with moyamoya, then I strongly suggest that you get the opinion of Dr. Steinberg.  There is no charge.

I wish you well.  If your son would like to talk to my son, I can give you some contact information.

Thank you for sharing your experience and the advice regarding getting a moyamoya specialist.  According to his bio Dr Magge has come to DC from Boston children's hospital and has a keen interest in moyamoya.  However our Neurologist is very supportive of getting a 2nd opinion from Dr Scott in Boston if we aren't  happy with Dr Magge's experience.  Boston is only 7 hr drive north.
Regarding telling our son, Oliver, yes focusing on the positives and that it is treatable was how I was thinking of approaching it.  He is very involved with his ongoing care of his NF1 and hates to be treated differently.  So I can only imagine he will want to know the ins and outs of moyamoya but I feel very protective of how her might react!  He has worked so hard at managing his specific learning difficulty associated with NF1 and is now on the Honor Roll at Middle school due to great support here in USA school system.  I didn't mention we are an Australian family posted to DC for 3 years. So your health system is very daunting to us as well but our Embassy has us covered with Cigna Health Insurance!
Thanks once again for posting so quickly to reassure me. I am new to this forum.

Jane,  I wish the best for Oliver and you and your family.  Your decision here isn't an easy one.  I can't offer advice, but I can relate something that has helped me deal with things.

Someone once told me there are hard decisions and there are difficult decisions.  A hard decision is one in which there is no immediately apparent answer, we truly don't know what is the right decision.  A difficult decision is one in which there is an apparent answer--but it comes with a cost or risk associated that makes it not so straightforward.

Our son's surgery at 2 years old was a difficult decision from my perspective.  I knew he had to have it for a fighting chance, but the surgery itself was frightening.

Heath....thanks for your sincerity.....so true!

Our 7 yr old had a stroke from which we learned he had MM.  We were up front with him about most everything.  Our son is the kind of kid that wants the information, so we answered his questions and prepared him as we thought was appropriate for a 7 yr old.  It really depends upon your son and how much you think he can handle.  I'd start a little at a time and you should be able to gauge his response.  Whatever you tell him and how you tell him will probably also be his response to classmates and strangers when they ask him questions.  Good luck!

Hope your son and family are faring well under such trying times.  This response may be late but thought sharing our experience would somehow benefit your son and family.

We confirmed my daughters diagnosis a day before her 9th birthday.  Mind you that my sister, my daughter's aunt, passed away from MM only 2 months earlier and it was through her passing that we were able to identify my daughters MM.  We decided to be honest and forthright with her but only after her birthday party.  We explained to her the disease, the available treatments, and the short and long term prognosis.  We didn't hide anything from her and she was part of all the conversations with the doctors.  To a certain degree, she was part of the decision process.   Needless to say, she matured very quickly.  We spent many nights surf the web together, reading the good stories and the not so good stories.  I can't begin to imagine, even to this day, what went through her mind and how she coped with the news at her age.  Nevertheless, we felt there was no other way, even today as we look back.  Two weeks after breaking the news, she was in Stanford in Dr. Steinberg's operating room. 

My daughter is in 9th grade now and doing very well.  You would never know she has the disease except her scars.  She's making straight As in all honors classes and lettered in her swim team in her first season.  However, she's not your typical teenager.  She's definitely more mature for her age, who sometimes takes things too seriously.  Can't blame her since she's reminded often through migraines and daily medications that she's not your typical teenage girl.  That said, she's overall a very happy, spirited girl whose courage and strength in coping with her disease both mentally and physically amazes us everyday.

It appears that you live in the DC area.  Please do not hesitate to contact me.  We'll be more than happy to share with you our experience, provide suggestions, recommend doctors, and even meet to prove to your son that one can receive treatment and do more than well.

All the best.       

Thank you for your advice and telling your daughters experience with MM and bypass.  As the process of getting surgery organised has been more drawn out than expected, we have sat down with our son and outlined the options and what surgery we felt would suit him best.  He has also taken it all in with amazing clarity.  He just turned 13 yesterday.  We are just waiting on confirmation hopefully within the week from our Embassy, but we are hoping to head to Boston Children's Hospital for surgery over the summer school holidays.  For us the video on Boston Hospital website helped Oliver absorb the diagnosis of MM and Dr. Ed Smith also rang and spoke with us as a family which reassured us about our decision.
Once again thank you for your advice. Cheers.