Hi everyone
I am just a new person to this site but i am hoping that someone out there might be able to help me. My daughter (jacoba) is 18yrs and had most things going well then she started to have little seizures and the doctors stated that she had epilepsy.  They put her on medication and then some months later she had a stroke this is when i learned that she had moyamoya and that they thought she would stroke from the left side of her brain not the right (she stroked on the right side) she has been through rehab to get moving again. I am still not sure what is happening. I asked the doctors if the moyamoya was causing the little seizures but they stated no it is epilespy.  The doctors stated that they do not want to operate due to the Neurofibromatosis (but there is none of that in her head). My daughter is still having little times when she is not there and she is not the person that i use to know. She has lost a lot of friends because they do not know how to be around her. She does weird and wonderful things and then she can't remember doing them, this causes a lot of problems between her and her younger sister because she will tell me what Jacoba has been up to but Jacoba states that it did not happen. I thought that with epilespy that the seizure were when the whole body was affected but with jacoba it is just the brain. I do not know what to do at this stage. We live in Queensland Australia. Can anyone tell me if there are other people like Jacoba.
Kim Rose

Hi Kim,
Welcome to the moyamoya board.  There are lots of people here with varied experiences who are always willing to share information and support.  I do know that there are several people here with neurofibromatosis and mm (or who have children with that diagnosis).  Hopefully they will be able to speak more specifically to your daughter's issues. As far as I know, their NF has never precluded them from being a candidate for surgery.  My nephew has NF but not mm and I have mm and seizures.  Obviously I am not a doctor, but as a person with mm and seizures, it sounds to me like your daughter is under medicated if she is still having these types of episodes.  It is really important for someone with a seizure disorder to be sufficiently protected so that they do not have break through episodes like this.  Anti-seizure medication levels should be carefully monitored. As Paula said, it is really critical for your daughter to be under the care of a moyamoya specialist.  I am not familiar with the doctors in Australia and I hope that the members of the board from Australia will be able to help guide you to find a specialist there.

My prayers for you and your family,
Tracey

Thank you all for your help. I have been reading a lot about MMD from this site. I have been trying to contact Pros. Stoodley. After reading many things on this site i now have lots of questions to ask when Jacoba goes to the Neurosurgen and the Neurologist.
Kim