Hello everyone.
I am new to this site and find it very informative.  Everyone of you out there are a blessing for newly diagnosed patients and families with MM. 

On Jan. 3rd of this year, our 6 year old daughter had a major episode at school.  She couldn't talk, her right arm and leg went numb and she eventually threw up several times too.  The school never thought about calling 911, who suspects that a 6 year old would have a stroke!  Well, she was eventually admitted to Children's in Denver and had all sorts of tests.  Her symptoms completely resolved with in 24 hours and she didn't have a stroke, just a TIA.  Thank goodness!  They discovered a narrow artery  with some raggedness in her left MCA.  After many tests and even a recent one this last Monday, they are still not certain what it is.  They said it could be the start of MM or vasulopathy of some sort.

She has had short lived episodes where she could not talk, and had weakness in her arm or leg.  She often has TIAs, especially when she is stressed.  (her brother and her are like a cat and dog!  We are trying to make him understand that he needs to just walk away & tell me if she is annoying him))

I was wondering if anyone out there had symptoms like this before being diagnosed? (especially in a young child.)   I have had all her files including all her films sent to Dr. Steinberg.  I also have a tentative appointment to see him April 3rd.  I am just waiting for him to respond and give us his opinion on if he can help her and what he thinks it is.

I would appreciate some feedback.

Have a great day everyone!

MaryAnn

Hi Tingxin,

I hope your daughter is doing well now, I can't imagine what you and your family went through during both her surgeries. 

Thank you for responding.  It's so nice to know that a stranger could care!  I guess I am no longer a stranger, but a "family" member of this site now.  I heard back from Teresa, after Dr. Steinberg reviewed our daughter's films.  She said he definitely thinks its MM.  We had scheduled an appt. for April 3rd but after her hearing about Taylor's episodes, and the frequency of them, she moved up our appt.  We now have to be there by this Tuesday!  I'll be taking Taylor on Sunday to CA to be with my family in San Jose first.  I am so thankful that I have family near by, I don't know how I would manage with out their love & support.

I'd like to thank you and everyone on this site for being wonderful!  What a blessing you are.

Take care and thank you once more.

MaryAnn

Maryann,Welcome to the group.It's grea that you have an appointment already.Your is good hands I'm sure.My daughter ahd ehr surgery at Boston with Dr. Scott.She was 5 at the time and very unstable but now she's doing wonderful and has had no new strokes or TIA's.She wasn't aboe to communicte everything she may have been feeling at he time but she ahd several strokes.Her very first symptomes were just a general unsteadiness,she started walking like she was drunk.She 9 now and doing great.I wi'' keep your family in my prayers ahve a safe trip and let us know how you make out.As the others have said ask awya with any and all questions someone wil most likely know the answer.
Mary
grace

Hi Maryanne.

I have a granddaughter, now 16 years old, was diagnoised at age 9, she had TIA's headaches and throwing up all prior to disgnosis, was first thought thst she had childhood migraine, until one doctor thought to investigate further.  Her TIA's lasted anything from a few minuites to a day.

Good luck and welcome to this site, I have found it a great help.

Pat
United Kingdom

Hello everyone,

I am sorry that it took me a while to log in again.  Taylor and I are at my parents in San Jose and I don't always have access to a computer here.  We have also been very busy with the various tests at Stanford.  Talking about tests, I felt so horrible that Taylor was poked 5 times by 3 different people to get an IV in her arm for her SPECT test.  After 2 TIAs, I finally had to stop it.  It delayed her test by a day, but at least she got to recover from it and also drink pleanty of fluids to plump her veins up.  Thank goodness the hydration worked for the next day.  The first try (against her will) worked.

Well, here we are.  Her surgery is this Friday with Dr. Steinberg.  I am relieved it's finally here, but also very nervous.  She seems perfectly healthy now, I guess I'm afraid she won't be the same when she is finished. 

It turns out that Taylor will need surgery on one side only at this time.  She has some MM starting on her right side, but it's only with her external vessels.  We'll have to have an angio in 6 months to see if there are any changes.

I truly feel for the families that have to go through this with no family nearby, or worse yet, in a hotel room.  I first arrived here in CA such a wreck!  Having my family with us through this trying time, is such a relief. Taylor is occupied with playing with her cousins and having a great time.  I have to remind myself at times that we are here for her surgery, and not a vacation.  My thoughts are with the families that have to go through this alone.

I am comforted that she will be fine.  Dr. Steinberg, Teresa and Jill are all so wonderful.  It's so nice to have Jill on staff now, she's always there to lend comforting words and support. 

Taylor seemed at ease with the knowledge that she'll be having surgery on her head, but this evening she was a little nervous that she would not wake up from her surgery.  I had to comfort her and tell her that she not only had the best surgeon, but also that God was watching over her and will make everything better.  It broke my heart that she has to be feeling this right now.  I can't wait for all of this to be over with.

I will bring her to Stanford tomorrow to have Dr. Dodd look at Taylor's angiogram site.  It's been 13 days since she had it and it's still very tender and swollen.

Thank you everyone for your support and prayers.  Please especially keep her in your prayers this Friday.

Take care and I'll update you later.

MaryAnn

Hello everyone!

Taylor's surgery went very well.  Dr. Steinberg said that her blood flow went from 6.9 to 12.9!  It doubled!

Our surgery date was unusual, in that it was done on a Friday.  Jill told me that he normally does them on Tuesdays & Wednesdays.  (Thank you Jill for visiting me a couple of times, I really appreciated seeing you.) The weekend at least was very quiet. 

During her surgery, I met a Carmen & Mark from Michigan.  Mark is almost 2 and had his 2nd surgery on the Tuesday before Taylors.  Meeting her and her comforting words, and seeing how Mark was just about fully recovered on his 4th day after surgery was sooo comforting.  They came by the next day to see Taylor and  Carmen could hardly contain Mark.  Mark was full of energy and wanted to run!  She told me not to worry, that Taylor was in good hands.  She was right.

The evening of her surgery was a little scary for me.  One doctor told me that they will try to maintain her mean (the average of her blood pressure numbers) between 70 and 80.  Another person told me it was 60 to 90.  While she was a sleep, it would drop to 54 and 55.  I would gently touch her to wake her up so that it would rise again.  After 20 mins. of trying to reach a neuro person, she was told that it should be 60 to 80 and immediately gave Taylor Albumin (a blood product) to raise her mean.  That worked and from that point on it was mid 60 to mid 70s.  What a relief!  The next morning a neuro doctor, (an elderly doctor that works with Dr. S.) said that in kids it can drop in the 50s.  I just wish that someone told me that up front!  That would have saved a lot of stress. 

The the next 2 days Taylor was really swollen on her left side to where her left eye was swollen shut and could not be opened.  I was told not to worry and that was expected.  I am surprised she didn't develop a shiner.  She was taught by a young doctor to say "you should see the other guy" when someone asked her about her swollen eye.  After the 2nd time, she said exactly that!  It's amazing how quickly children recover.  By the 3rd day, she wanted to walk around and visit She wasn't embarassed to show her scar, it was almost as if she was proud to show it off.

We saw Dr. S only once, late Monday at 11:00 pm after he had a full day of surgeries.  It's amazing how he keeps going.  We will have Taylor's follow up this Friday w/Teresa since Dr. S will be unavailable.  On Monday we will finally return to Colorado.  Taylor is definitely ready to return to school and see her friends.

I hope that all will be well.  She had a brief TIA while in the hospital and was told that could happen while her graft is so new.  By the way, she had a direct by-pass surgery.  I guess that's STA-MCA surgery. 

Thank you everyone for your support and prayers.  I think we will be taking Taylor to the reunion at Disney.  She definitely deserves a fun  vacation w/her family after all that she's been through.  It truly was tougher on the family than herself.  She said it wasn't bad at all.  I guess it's because she was spoiled rotten w/all sorts of gifts from everyone.

I hope to meet everyone in Florida.

Take care.

MaryAnn