Hi Kim,   Welcome to our MM family!

I hope and pray that your son doesn’t have MM, but the good news is, IMO, you’ve sent his films to the best doctor in the world. There are no hands on earth I’d rather put my life in, than Dr. Steinberg, he’s the best!

I’ve heard people here describe similar episodes as with your son. The way I understand it is, if you have a TIA (mini stroke) which is common with MMD, it interrupts the blood flow to the brain and within minutes brain cells are affected, causing symptoms in the parts of the body controlled by those cells. So, a TIA may affect his vision, speech, behavior, and thought processes and may cause loss of consciousness, and even cause the seizure itself. So, IMO it is all together possible that MMD can cause the episodes you’ve described. Every case is different though because of each person’s various factors involved.

If it is MMD Kim, thank God you found out before a major stroke. This is a rare disease, but it can be managed with great success with a MM specialist, and you found a blessing in Dr. Steinberg, he’s one of a few MMD experts in the country, so I feel confident that you’re in great hands and you’ll get the answers and help needed for your precious little boy.

Please keep us informed. You’ll be in my thoughts and prayers!

Mar

sfmom,
          My daughter Mandy was  21 or 22 when she had her one and only seizure we went to check on her in the morning and she was sitting on the floor staring and totally unresponsive after about 15 minutes she was slurring answering questions then went to sleep and woke up like nothing happened and asked why I was sleeping in bed with her, she recalled not a minute of it even when she was talking. She takes Carbatrol for her seizure and has never had one since its been about 2 years, by the way hers was a year or so after surgery, she was having them a year before she was diagnosed but was passing out at work and was mis diagnosed several times so she ended up having 4 major strokes. I guess the passing out was some type of seizure I'm not sure those Doc's didn't really know what was happening..they were in a different state than her surgeon.
                          Nancy

Kim,

Hi.   My daughter was diagnosed with moyamoya at around 14 months old, and had surgeries about 6 weeks later.  Daphne had significant problems since she was three months old, starting with difficult to control seizures (20+ a day), and then - at 14 months - suffering two strokes.   She is an extreme case.

Daphne had a few MRIs as an infant, but her moyamoya was not detected.  It was only until she underwent an MR Angiogram (at a more renowned children's hospital than she'd been to)  that we learned of her moyamoya.

I realize my experience with my daughter is very different from your son's (thankfully!), but I do feel like my experience has taught me a lot.  First, I do know that seizures can be caused by MANY things, besides Moyamoya.   I firmly believe that too many neurologists just try to treat the symptoms of seizures without making a big effort in looking into the cause for them.  I think looking into the reason behind the seizures should take first priority. 

I am glad you are sending your films to Dr. Steinberg, and hope you get more information from him.   Dr. Steinberg saved my daughter's life, and I don't know of anybody who knows more about moyamoya than he does.

Jenny