Hi Everyone,

I'm Jim, Neme's Dad & Tunde's Hubby.  Last nite we had a very rough nite.  Neme went over to a very good friend of ours w/ kids & kittens & lots of stuff to do.  She had a great time but when we got home she was 'crankier' than usual.  We tried to give her a quick bath but that erupted into a very unpleasant experinace for all...she wanted to go to sleep & started throwing a fit w/ crying, etc. which isn't like her.  We wisked her from the bathtub, dried her off & took her to bed w/ Tunde & I.  Tunde was calming her down w/ a "story" & Neme looked over & said she couldn't touch her stomach w/ her right arm.  Tunde yelled & at me & I went racing upstairs.  She had good movement w/ her rt arm to her head but said she couldn't touch her shirt.  W/o saying, we went into panic mode.  We started asking her what was wrong & she replied something about "roly polies in her hand & she needed to let them go..."  For those of you unfamilian w/ roly polies, they are little slug-like insects that are harmless & curls up into a ball whenever they are disturbed & Neme loves them.  We immediately started talking about rushing her to the hospital but there are no Moyamoya experts in the Dallas area that we have found, especially at 11pm on a Sunday before Mem. Day.  Finally she became relatively coherant again & Tunde continued to calm her down w/ the story & she regained her mobility again.  She fell right asleep (quite exhausted I'm sure from a full PM of play).  Tunde & I were up most of the night talking about the what ifs & should we rush her to Children's Hosp. in Dallas (about 45 minutes from us).  But we decided that she was finally resting so peacefully & if we woke her up to go to the hosp. it would prob. add to her trauma & may spur on a full-fledged stroke. 

Did she have a TIA?  What do we do next time this happens?   This is absolutely unbearable...we don't leave for Stanford until June 17. SUGGESTIONS/ADVICE PLZ???!!!  These are the longest days on my life & don't know how we can make it another 3 weeks of not knowing before 'real long road' begins.  Thanks in advance for your thoughts....& thx everything so far.
  Jim

Jim,

Thought this might be of some help.

If one is experiencing TIA symptoms, TIA stands for

T -Take
I - Immediate
A - Action

Here's some sites for TIA symptoms and actions.

http://www.americanheart.org/presenter.jhtml?identifier=4781

http://www.stroke.org/site/PageServer?pagename=TIA

Lore

Kim is right...It always seems to happen on weekends and holidays. It never fails. I echo everyone else, get a hold of Dr. Steinberg's office. Many times Teresa has even emailed me on the weekends if I've had an issue or a question. Please keep us posted and Neme and your family are in my thoughts and prayers.

Reagan

Hey Jim

I have no words of wizdom, everythings been said above. Luca never had TIA's (touch wood). My heart goes out to Little Neme during this very testing time.

Stay strong
Mark (Luca's Dad)

Tunde & Jim

Neme WILL be in good hands with Dr. Steinberg   !!!!!! He has done so many MM surgeries ( With Success ) I am an adult with Moyamoya had my 1st Stroke in 1997 and was paralized on my left side for about 2 months.....
It's been almost 12 years since my 1st surgery..... Kids usually do much better than adults, I have severalfriends that has had    children after there surgeries.....
My one friend was one of the first few DXed with moyamoya in the United States about 20 some years ago and was Dr. Scott (Another Specialist in moyamoya surgries ) in Boston s first MM patient,,,,She is a Nurse and has a  son,,,,,,She became a nurse due to the fact that she spent so much time in the hospital  
She was a child when DXed,,,,,,And back then they didn'tknow much about MM,,,,,,Heck when I was DXed you couldn't Find Anything about Moyamoya on the internet,,,,,,,So We Have Come Along Way !!!!!!!!!

Take Care,,,,,,,,,,,Elaine Calvert