I am the mother of a 17 yr old boy who suffers from Moyamoya. He also has multiple other problems. He has Hydrocephalus, Neurofibromatosis, Partial Complex seisures, and has had two strokes. I have seen quite a few stories of patients with MM who suffer from head pain, some who are also down syndrome, many who have had strokes. I would like to know if there are any MM patients who suffer from multi neuro problems as my son. I would be very interested in any information they have to share. With the brain damage my son has, it is not possible for him to share with us what exactly he is going through. TY inadvance for any input anyone would like to share. God bless all of you here who deal with the daily uphill battles.

Hi,

I just read your post.  When you have time I would like maybe to meet you in the chat room or maybe we could chat on the phone sometime.  I have a very good friend with neurofibromatosis 2.  

Hillary

 I have to agree this really is a wonderful place with some amazing people.I'm sorry to hear that your son has had so many hurdles.My daughter besides MM, also has Down Syndrome.I know how hard the communication can be, she's not as verbal as a typical 8 yr old she can't tell me everything she experiences.I find it very helpful to talk with others who have had strokes and who have MM.I also post on a brain chat stroke board.I've gotten a lot of input from adults who have had strokes and find many similarities with the recovery.The most heartbreaking part of Kathleen's strokes has been the fact that she worked sooooo ahrd the frist 5 yrs of her life just to learn everything she was running, jumping, talking, knew her ABC's, and was determined to do everyhting her big brother could do even football.After the strokes she was like an infant starting over,(it's really ahrd when you just feel your child has been given more than their share of hurdles)but it never got her down she just worked even harder and was even more determined.She keeps me smiling everyday!! She's taught me so much about what's important.Has your son had surgeries? when?You may have already posted forgive me if you have.How is his recovery from the strokes?
Mary Grace

Thanks for the input mg.  No Michael has not had surgery as yet.  We are waiting for the surgeon to come back from vacation, which will be in another week.  I will have more info then.  

His recovery from his strokes was so-so.  He has about 40-50% paralysis on his entire right side, including his tongue, so his speech, right arm and right leg are weak.
His first stroke was in Utero.  His second was at 4yrs. old, and he still wasn't diagnosed with MM until six.

I am sorry to hear about all the hurdles your little girl has faced as well, but she sounds like a very determined young lady and god willing she will get back some of the things that have weakened on her.

I am very new at posting and finding returned posts so bear with me please  :)

Mshane (Michaels Mom)