Hmmm. I had surgery when I was 14 in Middle school. My grades before were straight As, but afterwards I had one or two Bs. I believe that the Bs were a result of classes getting harder, not brain surgery. After surgery, my parents were pretty lenient with grades, telling me to recover first and grades came second in importance. I think I'm doing okay in school now, not magnificent grades since I still have one or two Bs, but not really low either.

My parents are hard on me about school sometimes, and I know it's because it's my junior year, very important year for grades and I haven't gotten good enough grades to make up for my lower sophmore grades. But in school, I'm able to take  some AP classes. I haven't really thought of MM affecting my grades. I thought that stress had a bigger factor for me.

It has been couple of hours since I posted, and I am already seeing some interesting responses.  I hope that most of the moms of school-age children notices this thread and contribute, as I would like as much input.  Being out of surgery only 3 months now, Claire looks like as if nothing happened.  However, she complains of frequent headaches, and easily gets tired.  We started her music lessons, and she is back in tennis lessons, which was fine for her.  Sanelle's response is interesting in that lower grades are not due to brain surgery but harder work.  As a parent, you try to unravel how much is due to changes in her health and how much is due to lack of hard work.  You tend to walk the fine line between understanding and high expectation.  I am sort of rambling here but I would like to discuss with other parents and MM grownups who have been through school about this. 

Does Moyamoya put a stop to any higher aspiration about education you had before?

Alexis

Hi Alexis!

It's great to see you on the board.  I hope you Stanley, Claire and Elliott are all doing well.  We do need to catch up!  You know some of what I'm going to write here, but I think it's important to give the information and perspective to others also, so bear with me, o.k.?

Tara wasn't properly diagnosed until the end of her junior year of high school.  The doctors said that her 2 small strokes likely occurred early in infancy so I believe, in hindsight, that she had MM at a very young age.

Tara has a long history of problems with test-taking.  She was an almost straight A student . . . until it came time to take a test . . . and then she would absolutely bomb it.  Unfortunately, this wasn't an isolated incident - it happened consistently.  We were frustrated as we also placed our priorities on academics.  Campbell and I wanted her to be the best at whatever she did.

Fast forward to now and a year and a half post-surgeries . . . our perspectives have changed.  We're grateful to have a child (well, not so much a child anymore, as she's celebrating her 19th birthday today!) who's alive and well.  Please don't misunderstand me - academics are still very important.  But the expectation of her having to be the best (at least for me and Campbell) doesn't exist anymore.  She needs to get her education and be happy with her chosen profession.  That's all that matters.  Does it have to be at the best college or university?  As far as I'm concerned, no.

Tara's test-taking difficulties may have existed even without her MM.  I don't think we'll ever know.  What I do know is that she's happy.  She knows what she wants and she's going after it.  The 3 of us have occasional melancholy moments about the affect MM has had on our lives.  It wasn't what we planned!  Life isn't about what we've planned, though, and we must adapt to what comes our way, all the time believing that there is a reason for everything.  (Being the control freak that I am, this is never easy!)

As a fellow parent, my advice to you is to try not to worry.  Certainly keep an eye on her other side, because (as you know) if the blood flow to her brain is compromised it obviously will affect her schoolwork.  Having met Claire, though, I'm sure she'll do fine.  She's a bright, energetic, positive child who will find her way.  And, with parents like you guys, how can she go wrong?  Looking forward to seeing you next month . . .

Warmly,
Jill

     

Jill, I am glad that you noticed me.  I saw the pictures from Princeton and wow, you guys were across the continent.  It must have been super for Tara to frolick in the snow.  Shan, good to hear from you, too.

This is becoming very interesting.  I feel that, I am getting over the information-gathering stage, when I was frantically searching for information in the website, and crossing over to "Living with Moyamoya" stage, as new questions about how to plan for the future and cope with daily crisis. 

Jill, I think I asked you before about this briefly and what you have written is exactly what you told me.  However, I did not know about Tara's testing problem.  Interestingly enough, Claire's testing difficulties just started to emerge, and that is why I started this thread. 

I try very hard to understand how my daughter goes around the day in school and at home with MM and how MM affects every aspect of it, but there is a limitation for me since I myself is not the one with MM.  Michelle's response was very interesting for me in understanding what my daughter is going through.  Her reading comprehension level seems to have fallen down, but again, it might have started even with MM.  These are not the questions that we can ask Dr. Steinberg, and I wish that there more research into the way MM affects brain functions, so that we parents can use to deal with problems of and plan for the future of MM children. 

Are there any other MMers or parents who can give their two cents?  Michelle, thank you so much for letting me know how far you have accomplished in your education.  It is inspiring. 

Alexis

Wow, Roz.  Thanks for posting all the way from England.  We are planning to visit London with a couple of years. 

Your saying that the grades started to fall off with diagnosis are interesting.  With Claire, it started a few months before that. 

By mental arithmetic, are you meaning quantitative reasoning, aka math word questions?  Claire started lagging behind it those.  Again, we never know how much is due to MM and how much is due to her ability. 

The most important thing is that you went on and finished college and have satisfying career.  I will be very happy if we can expect that.

Thank you so much for sharing your stories with me.

Alexis

Hi Alexis,

If you wanted to, I would love to show you all around London. I'm about an hour and twenty minutes away by train and have done the tourist sight-seeing bit myself. The open top red bus tour and boat trip along the Thames allows you to see quite a bit.

With regard to mental arithmatic, I felt that I struggled because I had no pen and paper to work things out - I wasn't allowed a pen and paper as I think the person assessing me was looking at how well I could break down information, hold the information, then use it for another part of the question. For example two or three part Maths questions. One question involved the following - (I can't quite remeber the figures but I'll use my own)  six apples cost £1.27. A man bought a dozen apples and gave the shop keeper a five pound note. How much change was he given? I could quite easily tell the assessor how to figure it out but couldn't hold the information to do the sums in my head for long enough. These type of questions were read out to me so I couldn't see the figures in front of me. I could quite easily solve it if I had a pen and paper (or calculater!). I was also given a time limit. I was very concerned about not being able to do such a simple sum and the other short term memory tests but the assessor reassured me and said that it may simply be more of a concentration issue than anything else.

With reference to my schoolwork slipping prior to diagnosis, the onset of physical symptoms were more sudden. From what I remember, the cognitive side of things may have been more subtle and I think that with diagnosis, my schoolwork was then looked at more closely.

As for cognitive improvement after surgery, I asked the assessor if he'd studied other Moya Moya patients pre and post op and he said that he had. He mentioned one particular case where he had seen very encouraging improvement. I hope this info in turn will help both you and Lou.

Best wishes,

Roz

Hi, Alexis:

I saw your post in another thread  and I totally agree with you that we can not thank enough for the support we received. I saw many responses on this interesting topic already, but just wanted add mine. Li was diagnosed two year ago when she was 16 and in her junior year, no treatment until last month. During these two years, she graduated from high school and got into a college, but I did notice her short memory is not as good as before, school work got harder for her. For us we really don't know it is MM or the late effect of chemo, she had many high dose chemo at age 12.  According to herself, when writing, sometimes it's getting harder for her to search words and had no interest in math any more. For reading, she needed more times to get the facts on what she is reading. Just like Jill said, we are so grateful that she is still with us, I feel happy on whatever she is happy to do. She is still very interested in humanity, like reading, writing. Now she is at home, will return to college this fall, we'll wait and see how she is doing after the surgeries.

Regards
Tingxin

Claire, it's been a while since I've visited MM.com, too, but glad I took a look today.  It seems theres definitely something related with mental ability and MM.  These replies are great!  It just gives us such hope for our kiddos to hear that others have been there and came out alright!
Our son, Kyle was just 3 1/2 when he had a left-hemis. stroke and was dx'd w/ MM.  He had surgeries on both sides and then occupational and speech therapy.  No one ever mentioned that he may have LD's or suggested testing.  In 1st gr, his teacher noticed that he could not read anything even though his phonics & comprehension skills were excellant.  The schools' tests did not reveal an LD, but they enrolled him in the sp ed. center for ELA anyway and he stayed in until we had him put back in the regular class in 4th gr.  His reading grades were fine, but writing skills were lacking so they put him back in sp ed for writing.  We eventually had him tested by a neuropsycologist who found that he did have language skill deficits as well as trouble with attention and impulse control.  Her conclusion was that his comprehension would serve him very well in spite of his deficits.  We left him in sp ed for 2 more yrs (writing only) then had him tutored (200 hrs - very $$$) at a local learning center over the summer and he is doing pretty well so far this year.  Good solid B's in ELA & history, Sci (sometimes A's) and B - D's in Math.  This year he seems to have more trouble with tests that previously. ?  He does say that he feels the tutoring helped with his reading.
In retrospect, I wish we had known about the testing earlier and had him tutored privately rather than the sp ed. classes.  He felt "different" going to different classes than his peers.  We also noticed that their goal was to work him at his level, not help him catch up and move out.  That may be handled differently in a different school district.  Ask around to parents whose children have been in the program.
Kyle has always dealt with headaches, too.  His neurologist has him on Periactin to help with the migraines.  He really doesn't have them much anymore. He used to get very tired, too.  A neurosurgeon told me that is to be expected of someone with MM.  Kyle takes Strattera for the ADD (which, we found out after the dx, is very common in someone who has had brain injury).  Strattera is not a stimulant, so is safer for someone with cerebra-vascular disease.
We try to keep his schedule light - sometimes that means I email his teacher to ask for an extra day for a project (he has classroom modifications which allow this), but he is really doing quite well these days.  In addition to school, he is in Boy Scouts (earned his Star rank in just under 2 yrs) takes tennis lessons 1 x wk and is playing in a church basketball league (its much more low-key than the school or area leagues).
I definitely recommend the neuropsycological testing.  With learning, the brain is so much more adaptive at an early age.  The sooner you know and can get intervention, the less they'll have to struggle.  I learned how to help Kyle w/ his reading at a Center that teaches parents and teachers how to help kids with Dyslexia even though Kyle is not dyslexic.
He may go to a local Jr. college before the University, but I truly feel he's going to be OK!
Good luck to you - I know you worry - you are a very caring parent and it does get frustrating not knowing who to ask, what to ask, etc!

Sue

It's been very intresting reading all the responses. I've been going through similar situations with my 10 yr old son. He was diagnosed in January 2005. I have always pushed him to be the best. He was always an A student. Even after missing so much school due to MM and being tutored at home. After several strokes and occasional Tia's he was still an A student. After each incident he had to learn alot of things over again. It wasen't until a few weeks ago, I relized his grades were decreasing. Mostly, in Math (his best subject). Of course, after my son was diagnosed I put my priorities in order. His school work is important but his health is #1. I still push him but, in alot of different ways. He has had to start over so many times. He's a tough boy and does not quit. His PT, OT and speech are very aggervating to him but he overcomes them each time. I have backed off alot with the school work but, I still push him. I think you have to. I have always told him he's going to be president. Everyone is different, and after reading all the young adults responces, I think I may hover to much. I don't know how else to be. Also, I think the children need to feel grounded and normal. If you change everything and treat them differently, won't  that will remind them that they are different? I don't think I helped at all, I hope I haven't confused you as much as I did myself. God Bless, Saundra