Hi all,
I'm new on here. I found out my daughter had Moyamoya this time last year and I haven't had the courage to look on any sites about it - too scared about what I might find really.
Chloe is 22months old and has suffered from 2 TIAs to her right side before have an EC-IC bypass on Feb 22nd this year...(she did have another after the surgery). We had been told this might happen.
Until yesterday things were looking positive and I was thinking she may not have another attack. Unfortunately not. She had another TIA affecting her left side this time. I'm all up in the air again really. I'm hoping we'll hear from the hospital sooner rather than later about possibly operating on the other side of her head. I had been told this was a possibility but the surgeon hadn't decided. I just don't know what to do at the moment...I feel like I'm back at square one.

Just wanted to get it off my chest really and hear what other peoples thoughts were.

Thanks, Dawn

You are the best advocate for your daughter. Insist on the docs having a plan. Too many times it's a let's wait and see what happens, and that can lead to unfortunate occurrences.

Hi Dawn

I'm sorry to hear things aren't going as well as hoped. I too have a little girl with moyamoya.

My only suggestion would be to get another opinion. I see Little Chloe had her operation in London; Luca had her procedure in Newcastle.

Stay strong and keep us updated. You'll find the support and knowledge in this group quite helpful.

Mark (Luca's Dad)

Dawn,
I am so happy you finaly made it on to this site. Welcome to the famliy. Please insist on the doctors having a plan, and never take the "wait and see" approach. This "Wait and see" is commming from a docotr who know what MoyaMoya (MM) is but is not experenced enough to know that it is not a "wait and see" disorder/syndrome.

Like Little Luca there are alot of parents of children who have had thier diagnosis at the same age as Chloe, so you are not alone!

Please keep us posted on Chloe's progress, and please ask any questions you might have.
Stay strong,
Becky