Hi Kristil

I'm sorry to hear about your situation, but I promise you will get the support you need right here.

It's very difficult to know exactly what's going on with Leo from your first post, but I'm assuming he's had some form of surgery for bi-lateral moyamoya. If you could give us a bit more detail we will be able to answer your more specific questions.

Moyamoya doesn't always give us symptoms until a stroke results, so blaming yourself for whats happened is pointless. Even if he did have some of the more common symptoms like numbness in the extremeties or headaches, how are any of us as parents supposed to know about moyamoya. This really is not your fault.

Just so you know, my daughter was only 11 months old when she suffered two devastating strokes and we were also told she is lucky to be alive blah blah blah, and she would never see again blah blah blah Well, you wouldn't believe the recovery she has made. I'm not suggesting your doctors don't know what they're talking about, all I'm saying is keep the faith with Little Leo and believe that children are capable of incredible things.

Stay strong for your boy, I'm sure he's scared too.

Mark (Luca's Dad)

Hi Kristil.  You can't blame yourself.  I couldn't get a doctor to do an MRI on my daughter for years and by the time she was diagnosed she had almost no blood flow to the right side of her brain.  Even the day of surgery Emily seemed fine with no health problems.  She also had surgery on both sides and is doing alright now.  If you have specific questions everyone on here will help if we can.  -Audrey

Handsome young man you've got there, Kristil.

EDAS is a very common procedure done on children, it's an indirect bypass and there are many members on this forum who've had the same procedure. Basically they take good arteries from above the skull, make a hole in the skull and place the good, blood rich arteries on the brain. Over a period of a few months, the arteries naturally attach themselves to the surface of the brain and feed it.

There's nothing to be done from this point but to wait. It's very early days for his recovery from the stroke as well as for results from the surgery. This is now your base point, he will hopefully only recover from this point. He will need to be monitored closely for a few months for further TIA's or strokes until the surgery has had a chance to do it's thing. If all goes according to plan he will start trying to recover from the stroke from now, and as soon as he's stronger the rehab will begin. How far the rehabilitation takes him is an unknown, this depends on the stroke damage.

Right now he needs time to rest and recover, his brain needs time to deal with what's happened to it.

I'm not a doctor and what I've written above is not a blue print of exactly what's going to happen, but more like a generalisation from my experience. Every case is unique.

Again I say, keep faith with your boy, he will surprise everyone. At one point, a few days after Luca's second stroke, our doctor came up to me and shook my hand looking deep into my eyes and said how sorry he is and that she basically doesn't have a chance. Oh, how wrong he was. From what you've posted about Leo's fiery, mischievous character, he's a fighter just like Luca. He might play sport again, he might not, the important thing is it's the same boy who right now needs a lot of love and encouragement.

If you pm me your email address I'll send some info about moyamoya that might help you understand what you're dealing with.

Leo continues to be in my thoughts and I'm waiting for the positive news.

Mark (Luca's Dad)

I am not a Dr., but I think that after a stroke, a change in mood and/or behavioural problems it’s “normal”, it depends on the area of the brain affected. In the case of Paula, she had two strokes with surgery, one of them in the left frontal lobe; this one seemed to provoke her the mood change and a very high irritability, very noticeable the first days, but slowly, she recovered again.

In addition, Drs gave her Kepra (high dose) because she had seizures as consequence of the strokes, and it seems that this medicine could “aid” to her behavioural problems because of the adverse reaction (it’s a very common adverse reaction of this drug). Then, once the Drs., withdraw it and changed for Trileptal, everything came back to the “normality”.

Please be patient and give him all love and support as you can. I know it’s difficult because you can feel sometimes that you don’t know your own son, but believe me, with enough time, your family and your beautiful son will recover your life.

All the best,

you all are so very helpful and kind. its nice to know he isnt the only
one and others are going through this as well even though it is so unfortunate for everyone.  i guess i just need to be more patient only time will tell and i will keep all posted. again thank you so much. you can feel the strength from this web site.    one question ? i see the had a moya moya convention in las vegas last year, do they plan to have one this year? i would so love to bring my son. if not this year for sure the next when they ok him to fly.