My daughter is 15 and a sophmore in high school.  While her surgery (on the right side only) went well and everything seemed good we are finding that moymoya is affecting her school work.  She is very bright, is in honors and AP classes and takes a lot of pride in her success in school.  To say that this year is stressful is an understatement.  Seems we are all told everything will be fine but no one wants to be the "bad guy" and tell us that it will be a challenge for teens.  Not just school, but friendships seem to take a hit.  Destin talks about how her friends don't understand how she feels.  They don't always believe her when she says she can't do something because her head hurts.  She looks normal so they find it hard to understand.  If there are other parents here that want to talk about teens and their unique circumstances with moyamoya maybe this thread will help.  I have so much I could write but I really just want to get a discussion started.  We have had the rare privilege of meeting another teen here in Tampa, along with her mother, and they have been a God send.  So, let's get some dialogue going here.

I amy not be a teenager but I am in Collage getting my BS in Electrical Engineering, and I work full time (40+ hours a week). I am not a full time student, I only take one class at a time. Right after the surgery it took me awhile to get my grades up. I always had a headack, but everything got better with time. It has been four years since my surgery and I am back to As! I was on Topamax for a daily migraine supressent. I now only take and as needed.

As far as the social aspect: It took some time for our friends to relize that I was diffrent. I couldn't stay out as late or if we were at a club with loud music I couldn't stay long. This too has inproved. When they forget I just show them my scar and say "remember", then they usaly say sorry. But I am dealing with 20somes not teens.

Pam,
You are NOT a BAD MOTHER!!! She needs more rest. It is hard on her system to keep the blood pummping. It will get better! I slept all the time I was not at work or in class. I would take naps then my husband whould wake me to do my homework and eat. Then if I looked like I was starting to get a headake he would say enough for now and we would watch so TV or I would take another nap. Over time the naps became less frequent.

My biggest advise is talk to them and thier friends about what happened and the surgery. If then they don't get it then it may be time to get new friends. I have lost some after my surgery and they didn't want to wait for me to get better, now that I am doing better they are mending the gap.

I hope this helps.
Becky

Pam,
YES!!!!!! I still get super moody when i had a bad day at work or class. My husband wanted me to go to anger managemet classes in the beginning. Then I gradualy was able to keep my calm, but when I and exausted I have slipped back into the horrable witch. As far as depressive cycles. They have decreased as well. I am now used to the idea I am diffrent. I am more aware of the things I can do, and have accepted the things I USED to be able to do. It is strange to know the thing I was able to do before. I got realy depressed for a while but the depression medication they were giving me (I tied 5 diffrent meds one at a time) ALL made me more suicidel. Also the headacks ARE a part of the mood swings. She is getting a headack thinking of the things and worring about the things she can or can't do. If it were not for my family and friends I don't know where I wold be. Stay Strong for her. She will draw from your strenght, and it will inpower her to know you at least understand.

Hope this helps,
Becky

Courtney has only been back to school for half days so far. We have gotten her homebound instruction for a few subjects. I tried taking her to a psychologist, but she refused to go back. She is pretty private and doesn't like to open up to strangers or have any attention on her. But she has been awesome with me, usually. I guess I am the comfort zone. Wow, I can't believe your daughter went back to school so quickly. That is great. I did get a letter from the doctor, and that helped with school. Will your daughter need more surgery? I was actually relieved they could do both sides at once because I don't think I could have gotten her to go back. 13 and strong willed. uugghh! Thanks for your posts! they hit home for sure!

My son is 17 and in the 12th grade (graduation this year, YEAH!!  College next, and I can see the end to my fingernails!!)     Although he was 7 when he presented, was diagnosed, and had his surgeries, many of the things you described have presented over the years (and some still now).

From what I understand, the frontal lobes control emotions, frustration, and even the ability to pay attention.  I had one neuropsychiatrist (spelling??) described my son as ADD -- but clarified that it was due to the strokes, NOT typical ADD.  My son, as a youngster and even now, has a short fuse.  He has a hard time with people believing he is "different".  He has managed to stay on grade level -- but it does require modifications.  Getting the teachers to realize that he needs these modifications has been a fight.  We did choose to stay with special education and IEP's because many teachers understand that much more readily than 504 plans. 

I don't know how much of his peers issues are an inability to consider his situation or are them being just plain snobby/rude/immature.  His friends are well aware of his condition since he has had it so long, but don't seem to give it much consideration.  He wanted to play football all through high school.  His pediatrician never approved it.  In fact, we went back to his specialists to get it approved for this year.  So there he is, trying to fit in -- but behind again.  And they have NO respect for it.  Again, I think this is due to their immaturity. 

Moving on, Matthew tired very easily.  This is normal for anyone recovering from a stroke.  And consideration needs to be given to it.  Luckily, we had excellent people at his school (speech therapist, OT, etc) who had this training and were willing to stand beside us at the meetings and back us up. 

When it comes to his "short fuse" -- I am about the only one who can through to him at that time.  This is more due to my close relationship with him than anything else.  And there have been a couple of times when no one could.  We take it in stride -- do our best to make sure there isn't a scene.  And then sit and talk when he is able to be rational.  It doesn't seem fair to his younger siblings though, that I have to keep them out of the way of his rampage.  At least, the ones where I can't reach him are few and far between. 
I hadn't considered until now that these might actually be an after effect of his strokes.  I remember temper tantrums when he was younger that I knew were his inability to control his emotions/frustrations as well . . . but I guess I thought he had healed more than that.  I guess that as he has grown the tantrums have simply changed style.

I knew there was a reason I come back here periodically . . . and I am hoping that this realization will make it "easier" for me to deal with him during these periods. 

I feel at this point that I have rambled more than provided insight . . .

Kim -- Matthew's mom

You are so right on with the million dollar question. My daughter is sometimes so defiant and mean. She refuses to go to school on some days. I know its because she is hurting, or depressed, but will not talk about it. I arranged some homebound instruction for the classes she is missing, and there have been times she has simply refused to sit with the teacher and have a lesson. How do you punish your kid in this type of situation. It kills me to see her hurting so much. But it seems like she just gives up. She says no one understands. Is some of this 13 year old rebellion? Who knows, right?
pam

i am in same situation as you. my son w\mmd though being the tuff kid nothing bothers him but i see the differences and notice the changes. i let him be so he knows hes no different but im beginning to think maybe i need more help and mothers going through the same. i am here in spring hill , fl. maybe we can help each other more. i know i sure need it

my son went to doc in denver colo. he is 14 now just had his bday the 17. he also has his angiogram in nov. to see if able to fly back here . so excited. i miss him so  much. i would love to get together not just for him but also to see how other moms keep going.