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

Hi Jim,

I'm sorry to hear Neme is having issues. From a parents perspective, the experience has to be frightening if not horrifying to see your precious little one in distress.

I don't have a child with MM. I am the caregiver to an older brother with MM. He had two STA-MCA's at Stanford in 2005. I wanted to acknowledge your post and hopefully offer some assistance.

Although it is difficult for me to determine exactly what Neme was experiencing, when my brother had tingling or speech or seizure activity (sometimes just starring), I got him to the hospital. My concern was he had already stroked twice and had a dissected right upper internal carotid artery. My point being, I was hoping to stop any major event by at least getting him to a medical facility where there is a neurologist who could at least take immediate action if necessary and call Stanford if need be.

We are in the same boat as you. There are no docs in our area in Ohio who are MM knowledgeable. However, we have established a relationship with a neurologist who has treated MM patients although it is not his specialty.

My advice to you at the moment is to email or call Teresa at Stanford and let her know about Neme's episode and ask her how you should handle this going forward.

Stay strong and know we are here to support you and Tunde and Neme on this journey. You are all in my thoughts and prayers and keep us posted on Neme.

Lore

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

Hi Jim & Tunde,
Why these things happen on holidays and weekends I'll never understand. When you make that call to Dr. Steinberg's clinic as Lore suggested, you might want to ask them for the name of a neurologist in your area who is familiar with Moyamoya Disease. Dr. Steinberg has quite a few patients from Texas. My friend is from Houston and was referred to a neurologist there who is well respected and familiar with MMD. My prayers and best wishes to your family and especially to little Neme.
Kim

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

Jim, Tunde

I can relate to your experience, Robert was 6 years old when I first witnessed a TIA, I am a EMT and couldnt remember the number for our local Ambulance I dialed 911, It took roughly 4 years to get Robert dianoised and then another 4 months to clear up insurance issues in traveling from Michigan to Stanford , Every time someone new saw what we now know are TIAS it was very freighting to them, I remmeber the time he had one in school and the teacher was crying, next time he had one in school he had a different teacher and walked up to her and said I have to tell you something but I dint want to make you cry. In the four years of dealing with TIA's of increasing frequencey. We did learn that if Robert showed symtoms of a TIA and we gave oxygen it seemed to shorten the length and severity of the TIA. Once the Neuro saw it work in his office he prescribed it for us.(prior to that I was using my EMS o2) We know keep a tank at school and the teacher knows how to Administer it if needed (just like any other med)  You may want to talk to your Doctors about it. I credit it along with a Gaurdian Angel for Robert not having a deblitating Stroke prior to Surgery. Also if Neme isnt already on a baby Aspirin Daily you may want to check into that, Roberts Neuro also had him on COQ-10 prior to surgery and he takes it now it enlarges the red blood cells and allows them to carry more oxygen. Always check with your Dr. before starting any medication

Mike

P.S. Wait til you meet Jill, Campbell, Tara and the entire Stanford Staff in person, your impression over the phone will pale in comparision

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)

Thank you all so much for the responds. We did and up taking Neme to the Hospital. She is doing good, but we felt better that a doctor told us that. :-)

Please follow her journey on her website. We will be leaving Dallas to Stanford on July 17th. www.caringbridge.org/visit/holdren

Thank you again. Tunde and Jim

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