We just visited our neurologist for the fourth time and are on a path to see if our son has MM.  He is a beautiful 3 yr old -- hitting all milestones and on appearance is as healthy as they come.  During his life, he has had 6 "seizure" type events.  Multiple EEGs and an MRI have all come out negative.  

Four of his seizures were preceeded by an emotional event such as hitting his head, severe crying which leds to the episode.  The seizures are staring in nature.  He seems in a completely altered state -- unresponsive to any stimulus (fireman have picked him up and walked out the door with him without a response from Alex).

His last episode is a bit puzzling.  It came on after a nap -- coming out of the nap into an altered state.  This lasted over two hours with multiple fireman, doctors, and other providers seeing him, poking him, with no response.  He seemed like we wanted to speak but couldn't.  He also couldn't move.  Vital signs were normal.  

The films of the MRI will be sent to Dr. Steinberg of Stanford.  Has anyone with a child this young seen similar symptoms and gone on to be diagnosed with MM?  We have thankfully been in contact with Maryann, Carmen, and Jill who have all been so kind.  Thank you in advance for your help.

Kim  

Hi Kim, [smiley=wave.gif]  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

Hi Kim,

My 3yr old son was diagnosed with MM in 01/06 and had EDAS surgeries performed on the left and right side of his brain on 02/06 and 03/06 respectively.  Although I am not a doctor, I'm just speaking from experience when I say I son displayed similar symptoms as your son.  We were told by our neurologist and our neurosurgeon that mini strokes were causing these behavioral change episodes.  The symptoms range from just staring out into space (seemingly unresponsive), inability to move limbs, and loss of speech.
Much like your son, EEG did not show anything out of the ordinary.  Apparently he had sufferred 3 major strokes that showed up in a CT Scan and later confirmed by an MRI Scan (the latest stroke occurred after he woke up in the morning).  It was only through an MRA and a very good neurologist that MM was diagnosed.  My son's recovering well from his surgery and has is no longer suffering from any strokes and his future looks good.
If you want to read the details of his story, you can find it on his site at:  http://www.geocities.com/aktham911/

We also got a second opinion from Dr. Steinberg, whom I hear is a great doctor.  I hope the best for your son.  Please keep us informed.

Albert

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

Hi, Kim,
Our son was just 3 1/2 when he had a stroke one morning and was dx'd with MM 2 days later.  like your son, ours had reached every milestone of development on or before target - we had no recognizable warning.  Now I know the 2 migraine episodes he had a few months prior and the sensitivity to sunlight the month before the stroke were in fact warnings- we just didn't understand it.  Fortunately, we live near Houston and Tx Children's had a Neurosurgical team familiar with MM.  He will be 13 next week and is about as normal as you can get.  Yes, he had a couple years of ST and OT, and was later dx'd with mild ADD, but he has particiated in every sport, occasionaly makes A/B honor roll and has almost completed his "Star" rank with Boy Scouts.
I pray you'll get good news from Dr. Steinberg; he is highly thought of here.  There is good reason to be hopeful!  Please let us know the outcome!

Sue

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