Hi Mimisaad

I'm not sure about the Rye syndrome bit, but if your daughter doesn't take the aspirin, then surely she runs the risk of having a stroke. I'm not sure I would take the advice of a pharmacist over your neurologist.

My 1 year old is post surgery and we've been told she will need to take aspirin daily for the rest of her life. We weren't told about any nasty liver effects and we also weren't warned about ibuprofin, and we've given Luca on the odd occasion.

I will definately research this and try to get some clarity. To me, it sounds like your points may be valid for a 'normal' kid, hence the pharmacists advise, but for a moyamoya sufferer we might need to live by a different set of rules.

I would love to hear from you about what your little girl is experiencing after surgery. Luca is too young to talk and I often wonder what she's feeling. Does your daughter have headaches, numbness, speach issues, balance issues, etc?

All the best
Mark (Luca's Dad)

There is a disease called REYE'S SYNDROME that is caused by children and adolesents taking aspirin and products containing aspirin during times of viral illness such as the flu and chicken pox.  It is fairly rare and has become more so since warnings have been given to prevent children from taking aspirin when sick with a virus.  It can cause potentially fatal liver and brain effects. 

With that said though, the info that I had gotten stated that there are cases where aspirin can still be used with caution in children under 19yrs. who have other conditions/illnesses (like MM).  There is also the consideration of taking Ibuprofin while on aspirin as it can decrease the beneficial effects of the aspirin.   

One other thing about aspirin...  a few months after his surgery 10 yrs. ago, my son had a stroke.  We were told that this stroke was a hemorragic stroke from taking the aspirin.   I am certainly not bringing this up to scare anyone who is taking aspirin or has a loved one who is.  However, as with any medication, aspirin is not without it's risks.  I think that it just comes down to weighing the benefits vs. risks.  I guess that if we have any specific concerns or questions, we should always check with our doctors.

This forum is great!  It does keep us all on our toes and let's us know that we are not alone!
Best to you all,
Gretchen

My nephew died from reyes syndrom when he was 13 several years ago----Very dramatic experince for the family (that was around the time they first started to realize the conection to asprin-----He was an only child)

I just had surgery on my foot Friday had a tendon streched and anchored to the top of my foot and a screw under my big toe to fuse it   Just thought I'd let you all know So If anyone has claw toes from a Stroke (Like I did in 1997)  Now next I will have surgery so my foot doesn't curve inward, Then because I feel like I have a Big Knot in my ankle,  The Dr. said they can do something for it now  

FOR THOSE OF YOU THAT DON'T KNOW ME-----I  FALL  ALL  THE TIME !!!!!!!!     Now hopefully this will put an end to the Falls

Elaine Calvert

Island ..that's exsactly what they said to us today.

If Mike gets sick with a flu ...high fever ..chicken pocks ect..we take her to the doctor and then evaluate if she will stop the asprin or not for the duration of the sickness. This is why they explained that Mike can't just go to a medi-clinic doctor now. She needs a special pediatrition that has seen moyamoya patients and understands what there needs are. We are lucky enough that Mike's stroke doctors wife is one of these. So again we are blessed to be at the Childrens Stollery Hospital in Edmonton where they were very informative and knew alot about Moyamoya.

Asprin is probably what saved Mike's life the weekend we took her home after her major stroke told she was having hemipelegic migranes with no tests till the following Tuesday.
She took baby asprin daily that weekend .... Almost as if she knew ...she would be knocking on my head at 7 am ..Mom ..ASPRIN TIME !!!
This from the child who never remembers anything. We tell her all the time ..she's got a GREAT GURDIAN ANGEL on her shoulder !