Hi all, this is incredibly new to me. I took my 6 year old son, David, to Children's Hospital last Thursday 10/30/03, as his PCP (and I) thought it prudent to figure out what was causing his "events" that he was having (PCP was thinking some type of migraine) - one 6 months ago, and one about one month ago. This last one left him paralyzed on his left side for about 20 minutes, and after a trip to the Metrowest ER we were told that we needed to make sure he was eating enough (blood sugar was 84, still in normal range).

Told the doctor at Children's what happened, and after a quick neuro exam, he asked if I was prepared to stay for 2-3 days for more testing. As I was closing on my new house in Shrewsbury that day, David stayed with my boyfriend at the hospital to get him admitted while I ran home, signed papers on the new house, packed suitcases and came back. By the time I got back, they had been able to do the MRI, read the results, and I was told there was a diagnosis. Ugh. The "D" word is never good.

So we went into a little room, that quickly began spinning as soon as I heard "rare brain disease...blah blah blah...moyamoya...here are some pictures...little blood flow...need an angiogram...meeting with Dr. Scott..."  Needless to say, I was stunned. Figured I'd go in there, find out about David's new "migraine affliction," get some medication, and bring him back to school so that I could do the closing on our new house. Stopped in my tracks.

He's now had the angiogram on Monday 11/3, we met with Dr. Scott in between surgeries on Tuesday 11/4 and he's scheduled to go in for the full-day (both sides) surgery on 11/18.

I've heard that we should plan on spending 4-5 days after surgery in the hospital...any ideas on what might make fun things for a little boy to do with all that time in the hospital?  Not sure how he'll feel afterwards - will he have headaches that make it hard to read? Has anyone put together any "books" in kid-speak to tell them about what's going on - and how the doctor is going to fix it?  I try to be honest, without being explicit (for obvious reasons) but I just wondered what might have already been created. He understands a lot for 6 years old, and I want him to feel that I'm being as open and honest as possible.

He's the sweetest little boy (really, not because I'm biased!)  so if you could all keep him in your prayers, that would be wonderful.  And let me know what you've found helpful to cope with this crazy disease.

Thanks so much - Michelle

Michelle, The waiting is the worst.We had to wait 3 months for Kathleen's surgery.She had 5 strokes durring this time. Please know you are very lucky to have this surgery so quickly.Kathleen was five at the time of her surgeries.She is now six and has had no new strokes.She too went to Childrens Hospital and had Dr. Scott.He is amazing.Our saviors were  the videos that we brought for her to watch.and the books we read.She also loved looking at the huge fish tank in the lobby and eating popcycles.Children's Hospital was great they made feel very comfortable and we had much faith in the Dr.'s and nurses they were the best. Please know that your family will be in our prayers and if you have any more questions to ask feel free.
Mary Grace

David and your family will be in my prayers next week, as he prepares for his surgery.  My son wa 18months old when he had his first bout of surgery(in Western Australia) and as far as i could tell, he wasn't in too much pain, although he was having morphine for the first 36 hours after surgery.  I found that when he looked around alot the day after, his head would feel a little funny(maybe due to the swelling). Maybe if david has a walkman, then music may be the way to amuse him.  I hope that all goes well, i know only too well, how you're feeling right now. my thoughts and prayers are with you. Please let us know how he goes.

Michelle,
I love your idea of a book. I am in college and had to write a children's book. I am now planning on trying to write one on MM, with my son Tyler. He is 12 and had the surgery in June. I will be sure to let everyone know how it goes. I will make sure I find the best way to make it available. Thanks for waking up my brain and giving me a way to help alot of people.
Rena