My 21 month old son has recently been diagnosed with MM.  What I'm wondering is after surgery, what will his quality of life be?  Will he need to continue taking medication (currently on blood thiners) after surgery?  Also, can anyone tell me from experience how someone under the age of 2 who has had the procedure done is doing today and how long has it been since surgery?  Thanks.

Hi Eric,

Sorry to hear about the diagnosis. My son is 13 and was diagnosed last yr after suffering 5 silent strokes and 2 major strokes.  He also had bilateral surgery done last yr. Thankfully after all he went through he came through beautifully! He had some problems due to the strokes and still has some issues but they don't really effect his quality of life. I think you will be very surprised at how well you son will do during and after surgery....it's pretty amazing how these kids bounce back so quick! Christopher is also on one baby aspirin daily (81 mg).

Best of luck to your son!

Hi Eric,
Our son was 5 months old when he had his stroke and he was operated at BCH when  he was 9 months old.
he is now 16 month old.
he underwent bilateral pial synangiosis.
His surgery was in march this year.. Send me a message if you have any questions..

Hi Eric, our son was two and a half when he was diagnosed and had surgery just following his third birthday with Dr. Scott in Boston.  Prior to surgery he had several silent strokes and one significant stroke.  He still takes aspirin every day and has some mild left side weakness, but you would not know it to look at him.  He is now a very active 5 year old, enjoying school and soccer.  We keep a close eye on him because he only had one side operated on, the other is (hopefully) not progressing.   As to quality of life immediately after surgery, for several months he was a bit fussy and likely in pain.  He was quick to anger and cry.  Those behaviours tapered off, and as I said above, he is doing great now (mom and dad, on the other hand, still worry every time he stumbles over a word!).
Best of luck to you.  I hope everything goes well.

Eric,
Hope this finds your son doing well.  I know it is quite frightening to learn of such a thing happening to your young son.
Mine was a little over 3 1/2 when he had a left-hemisphere stroke that got our attention.  Tests showed evidence of prior damage - we will never know when/how much.  But he is now 19 1/2 yrs, an Eagle Scout and a sophmore at Tx A&M in Galveston. His SAT scores were above National avg. Yes, he did have many years of therapy, though only the first 6 months were frequent, after that, 2 x week for speech thru 2nd gr, 1 x for occupational thru 6th gr. He did get special services for reading & writing, but in hindsight, I wish we had just hired private tutors and kept him in regular classes all day - sadly, children can be cruel even in K. :-[
The effects of stroke & MM can be very different for each pt., but I think you will find he will do fine.  I highly recommend having him tested before pre-K age to see if he is on target with skills.  Your school district may have an early education program you could enroll him in (free) to help in recovery with language and physical skills b4 he starts K if its needed. Talk with his neurologist/pediatrician for advice on this - the sooner therapy begins, the better the recovery.
wishing you all the best - and God's blessings!
oh, almost forgot - he only takes 1/2 baby aspirin.  he was on meds for migraines for several yrs, but off this yr - so far OK; BP was a problem during puberty due to kidneys being smaller than normal b/c of reduced blood flow with MM, but off meds for that, too. he was dx'd with attention issues (not complete ADD dx) and is supposed to take meds for that (not methamphetamines) but he is not too good about remembering to take those while in colleg. >:(  Note that attention difficulties are NOT uncommon with any brain injury so maybe keep a watch, learn what you can do to help with behavior mod's that might keep him off meds.
The best advice I can give you (other than trying to learn as much as you can - and you've already started that! :)) is just encourage him to try whatever he is interested in - he may not be the best baseball (or whatever) player, but, hey, how many really are? the important thing is to try and just keep trying and enjoy all life has to offer! recovery is done one brain cell at a time and there are lots of them - but he is young and has lots of time.