Hi
Just another update on Joe.
We are just back from Great Ormand Street Hospital in London where Joe underwent tests for 3 days.
First they done another MRI scan for about 40 minutes then stopped it and injected a dye into his arm and scanned him for another 10 minutes.
This was very traumatic for Joe (hes only 7 ), he wouldn't let the nurses put the needle in his arm and in the end after about 15 minutes of hysteria my husband Ian and i had to hold him down. Needless to say it was traumatic for us as well.
Then in the afternoon Dr Ganeasan (his consultant) came to see us and confirmed Joe has indeed got MoyaMoya, i have to say i am gutted, up to that point i was thinking there must be some mistake. She said that over 20 years she has dealt with around 50 kids and says Joe is by far the most healthy and fit child she has seen with this condition (which i think makes it harder for us to put him through surgery, if he was ill i wouldn't hesitate but he isn't), in saying that we now know what can happen which really scares us.
Anyway the next day they took him down for his angiogram about 10am, he marched down proudly in his little gown and even let us take his photo before they put him out, but his good humour didn't last long, they brought him back about 11.30 and when he started to stir all hell let loose.  He had reacted badly to the anesthatic and for the rest of the day he screamed and threw himself about the bed being sick. We tried to get him to drink a little water because they were talking about putting a drip in but he wasn't having any of it.
And just for good measure he pulled out his line(by this time Ian and I were exhausted and even more worried because they came to put a line in again as he needed the drip.) About 7pm they came to insert the line again we were going to run away but couldn't, but it was ok because he was so weak by this time they got it in no problem, so they put an anti sickness drug into it and put the drip up.
He eventually settled down and slept peacefully (so did we) and when he wakened at 4.00am he was back to himself and was looking for toast. So peace had resumed!!!
So at the minute the surgeon Dr Thompson has had a bereavement so we haven't been able to talk to him yet hopefully next week some time. We haven't got the results from the aniogram yet.
What we do know is that Joe has to have surgery on both sides, and they only do one side at a time so hopefully we will be back in a few weeks for the first surgery.
We have told Joe he has to go back for a small operation to stop his headaches and hes fine with that,
Its true what they say that children are very resiliant, i think i will have to take a leaf out of his book and settle down and just get on with it.
I know he will be in the best hands but as i'm sure every parent who visits this site will agree the thought of surgery to your child is terrifying.
We will keep everyone updated and thanks again to everyone who replies it really helps Ian and I to know that you good people understand what we're going through.
I forgot to say they have put Joe on 1/2 an asprin a day


Michele & Ian.

Kids are such troopers aren't they!  Whenever I start acting like a big baby about procedures etc. I should stop and think about these sweet little children and how scary everything must be for them.  I must say this, the surgery itself (in my case anyway) was much easier than some of the tests.  Maybe not for the parents and families waiting in the wings but for the person experiencing the procedures anyway.

Tell Joe I send a big from the U.S.  and that I think he is a very brave little boy!

Lisa