Hi! My daughter was 8 when she had her first stroke/surgery. She came out of it great, we only noticed some problems with numbers. 5 months later she had a TIA, second surgery and two days later a massive stroke. She's come a long way, yes, but her life has changed forever. She has aphasia, rt. hand parisis and cognitive difficulties which has taken away her ability to read, write or do any math. The problem is she remembers who she used to be and says "I hate my brain, I want old brain back. She has lost all of her friends. She gets along better with younger kids who accept her. She's in middle school. She doesn't fit in any category so trying to set up an IEP is a minute by minute situation. We don't know if she'll ever advance even though she says "I go college, Mom. Me be vet." She talks of driving a car, being a Mom. I stay positive on the surface but am crying often underneath.

Her outbursts are scary. She'll try to open the car door at 60 mph. She refuses to listen and does what she wants. She runs away often, and has even caused $2000 worth of damage to my friends car when upset about something. Her siblings are afaid of, and don't like her (to say it mildly).

She also can be the sweetest, kindest most perceptive kid I've ever met. You just don't know who will show up when.

She's on meds for her outbursts. A new thing has started happening... she gets very neausous (sp?), dizzy and then sleeps. It's getting worse, she's leaving school every day. They've said there's nothing more they can do besides the 2 surgeries, so no testing has been done since. She is going to have a 48 hr test (eeg etc) this weekend. I'm afraid what they'll find. Then again, I'm afraid they won't find anything so I won't know how to fix it.

Please forgive how long this is. I've never used the support groups-everyone seems to always be OK after the surgeries....I'm feeling quite alone. THANKS for listening!!!

 Gosh I'm so sorry.What a lot to be dealing with.That must be very difficult to know who you used to be.How old is your daughter now? Have she been followed by any of the MM experts? I'm sure this all is very difficult on your other chidlren.You see my daughter is 8 her suregeries were almost 4 yrs ago.She too suffered  several strokes one very severe.She's doing well now and has had no new strokes.But she deals with the affexts of the stroeks daily.She was also born with Down Syndrome so the daily struggles are not so different for her.She's walking again with the help of a brace and her speech is coming along but very delayed.she still ahs no use of her left hand and arm but I stillhold out hope for some functional use to come back.I'm sorry your feeling so alone.All of this has been difficult at times on my other 2 children also.I wish I could say the words that would make things easier for you but all I can offer is an ear to listen, and prayers for your family.
mary Grace

oh geez.... lovemom that's quite a story indeed.... kinda hit home to me as i'd just come back to this site to discuss how i'm having trouble taking my Moyamoya seriously, even though all my surgeons are constantly very concerned as i have a very severe/rare case...  seems like a very silly (and selfish) thing to say when most people here have been much un-luckier than i am.

you sound like a very strong woman to be able to deal with this, it must be so difficult also to have your other children against the whole situation.... i hope so much for your sake that the eeg etc.. shows something that can be helped....

if not, have you tried other methods of trying to bring your child back to who they were? perhaps a retreat, or just being away from anything for a little while.. alternative methods like meditation and/or art - music, painting.... something simple that she might enjoy and be able to lose herself-and find herself again in?

i dunno just trying to think of something that could help... best of luck, you're not alone.

Lovemom I PM'd you I hope it went thru something didn't look right when I sent it. Let me know if you got it. Thanks.
               Nancy

:( :(     Mom,  what can I say but that I've been on this site almost from it's inception and no story has ever touched me like yours.  You and your daughter are in my prayers and I'm sure the prayers of everyone on this site.  Like Mother Theresa said,  "You never know how much you need God until God is all you have.  
    Please make sure that you seek out the best Moya Moya and stroke experts in the country.  They are all listed on this site.
    By the way what are your names.?

Stay on the site, We'll always be here for support.

Take care,  Tom G.