Chris has had a sinus problem for the last 8 days-he has allergys all the time- but this was a lot diffrent.
i took him to his pedeatrition who wasn`t to concerned -drink lots of fluid ,rest . Chris already drinks LOTS of liquid anyway, but this am he started complaining of pain at his graft site and neck pain :(.
I live so far from Stanford I called and coundn`t get thru at 7am so i took Chris to the local ER.
Well it turned out that he was dehydrated from this virus or allergys -But the Dr. had never heard of Moya Moya ! They had to go look it up. They gave him IV fluids and he almost immedialtlly felt so much better.
I know I am rambling but there is a point here- I made sure my local ER has Dr. Steinbergs number and that they know what moya moya is and it is attached to his record.
Jolie called me back and was soooooo helpful . Just the support from her was fabulous.
This is the first time he has been sick since his surgury and it was scary for him and me.

I had to take Tyler to the ER before his surgery for the stomach flu. He's a small boy and dehydrates easily. You should have seen the ER doctor when I told him why we were there. They called out PCP and I gave them this web site address, so they could learn about MM. We lived in such a small town that the doctors didn't know an 11-year-old could have a stroke, let alone know what MM is. They ended up giving him 2 bags of solution because he was already dehydrating and then sending us on our way, Tyler was better with in a few days and I was more comfortable knowing one more doctor in town learned something new.

I think we will still be teaching doctors about this for a long time, but sooner or later they should know something without us having to tell them.

Rena

I gad to go to the ER sunday because i started having symptoms for the first time since my surgery a year ago. We figured out that i was probably dehydrated too! I talked with Jolie too and agree how nice and helpful she was. Since summer is now here i think we all have to remeber to keep hydrated cause i know this heat in Atlanta is bad right now! Hope Chris is feeling better!

Christy

Hmmm... something must be going around.  Daphne now has some type of stomach flu :(   We are hoping she'll keep enough pedialyte down that she won't have to go to the ER.

Thankfully, the staff at the ER we go to, now (Children's Hospital of Philadelphia) do seem to be aware of moyamoya, if we do have to take her in.

I am glad for this post, though.  I knew hydration was very important, but didn't realize that dehydration could bring an onset of symptoms.  How scary!


Jenny (mom to Daphne 19 months old)

Chris is feeling better :). tho i am keeping him home thru the weekend.
 I am so glad this is here for all of us to share our experinces with each other . it has made a big diffrence for me to be able to talk about what is happening and to read what is going on with people who have to do this.
thanks to all of you!!!!