This is my first post but I have been reading messages on this board for quite a few months already and I wanted to thank all of you and especially DJ for all the information provided and the support.
My 7 year old boy was diagnosed with moyamoya last fall and has already had EDAS surgery on both sides. He had his first stroke in October which paralysed the left side of his body. Fortunately he was diagnosed very quickly and had his first surgery in February , the second one in March. His paralysis has improved tremendously and he now shows weakness in his left hand and fingers only. Physically is is doing great despite a second stroke after his first surgery and he is also treated for high blood pressure. Emotionally he is acting like a much younger child and has difficulties at school with reading, writing and maths. He has readjusted well to going back to school but is having a really hard time concentrating and seems agitated at times. The emotional turmoil has been the hardest part for me as I am not sure of what I can do to help him.  I am worried right now because he is not as cautious as he used to be and puts himself in tricky situations. He is full of energy and started biking again, and doing all these things boys like to do and I am thankful for that , but I am also scared that he might do himself more harm. Everything seems so fresh and I know that it will take 6 months to a year for new vessels to grow, and there he is doing jumps, pushing himself and enjoying being a kid with his younger brother. Part of me wants to give him that freedom because it is a big part of his recovery but another part of me wants to hold on to him and never let go until I know it is safe. My question to parents with similar experience is: what kind of activities should he avoid? how do you deal with the stress of wanting to protect your child at any given minute knowing what could happen? How do you cope with your child's frustration and emotionnal outbursts? How do you stay sane  ; ?
So far I have tried to stay very positive and can't be thankful enough for all the care our boy received but it seems that now that we have gone through both surgeries I am not sure of what comes next. We will be seeing our surgeon in a few weeks for a follow-up and I will have a list of questions for him. Any suggestions on what specific questions I should asked?
Once again thank you all so much for the support you have given me in the last few months and for sharing your stories ... I wish you all the best

Dear Kristen,
Thank you so much for your kind words of encouragement. I know time is of essence now...
I remember reading your post about your girls'1st sleepover at the early stage of my boy's diagnosis when we were just trying to process the whole thing. Next time I will certainly be happy to have a glass of wine on your behalf as well (I am French so can't say no to a glass of wine  ; !). I certainly appreciate the support and I am glad to have found the moyamoya family.
Hope all is well with your girls  !
Gazou

Dear Mary Grace,
Thank you for taking the time to reply and for your words of encouragement. The school wants to put an EIP into place for next fall and we hope that it will make things a little bit easier for him. The thing I am not sure about is wether we should have him repeat grade 1 or not. He already had to wait a year to start grade 1 because he is a January baby so he is much older than most of his classmates. I am afraid that repeating a grade and not being able to be with his friends might affect him more psychologically. Also we are not even sure that repeating a grade would really benefit him if his learning difficulties are still there. Anyway I hope we will be able to make the best decision for him.
I am sure glad to hear that your daughter is doing better every day and my best wishes are with your family. I will keep you posted.
Gazou

Gazou,

My daughter was 9 when she was diagnosed and had her surgeries in may of 2004.  We are coming up on her 3rd anniversary.  I know how you feel, its hard to let go even a little bit to let them do the things they want to do.  I think the scariest thing for me was how everything changed so quickly and to learn to adjust things.  Holly has learned things she can and cannot do.  She protests at times when I tell her no on something, but over the last 2 years she's learning what her limits are.  The schools have been great in helping us and working with us on things she can do.  If you ever want to talk on the phone, just let me know I'll be happy to call. The long distance is not a problem, its a free call to Canada for us.

Hillary.......P.S.  Holly (my daughter) says hello!   ;