Hello there,

Well I wondered the past two days if there was a place like this. Bless you for creating one.
Here is our story,

Two thursdays ago I got a call from the school saying our daughter who is 8 and is named Mikeala (Mike for short ) had an accident at school and needed a new pair of pants, socks, and underwear. It's spring here in Edmonton Alberta so I assummed she had fallen in a mud puddle and said no problem. I'm on my way. Almost there they called again and said that she had thrown up and they thought she would need to go home for the day as she was sick.
No problem. A lil more concerned I kept driving. When I got there they motioned me into the sick room where Mike was sitting huntched over looking a lil be-raggled. I asked her how she was and she looked up at me with this very glazed over look and didn't answer. Although I could see in the look in her face that she knew it was me. She didn't respond. The teacher sitting with her said she hadn't talked for about 30 mins or so. They said they thought she was embarrissed for wetting her pants. I again tried talking to her and asking her questions. She would try and shrug her shoulders and look down. Then a teacher came in that was outside for recess and told me that Mike had complained to her outside that she had a tingled in her head.
I yelled at the secretary in the other room to get an ambulance and dial 911. You see I'm Mike's step Mom ..and her bio Mom has had a major stoke and lives in a hospice care facility and has had 4 brain surgerys and several anurizums. I knew the history and immediatly panicked.
The ambulance came and by this time Mike was stutering and trying to get out her words. She clearly understood what we were saying ..but her speech was very slurred and delayed. She could walk ..had a lil weakness in her right arm ..but nothing major.
When we got to the hospital ..they did a CT scan. Can you believe the emergency room doctor asked me if she was under alot of stress incinuating that none of her symptoms made sence and possibly she was faking! Are u kidding me ?
The scan came back normal and they sent in a nurologist to see us. A few in fact. They told us it was Friday and we would have to wait till Monday or Tuesday for an MRI but they would contact us. That they thought she had something called Hemi-palegic Migraines. What that is ..I don't know and I only knew over the weekend because I googled searched it all a million times. Over the weekend her syptoms would come and go. She was okay sometimes ..and others her speech would be slurred. She was always quieter and seemed diffrent to us. But she didn't have much weakness in her right hand at the time nor any where else.
Monday I called and lost if on the MRI people. Crying and begging I asked them for the MRI was despretly needed to find out what a Hemi-palegic mirgane was.
To make a long story short ..we got the MRI on Tuesday and they came out aftewards with a doctor and told us she'd had a major stroke.
Doctors and nurses where moving very quickly and at that point I'd say we say dozens of them within minutes. They told us the MRI looked like she had a disection in her neck artery ...5 days later we got an anigogram and they then said she had something called MoyaMoya. Which to us ..I have to say sounded like a Hawiian BBQ dish. We are exhausted ..have slept at the hospital for days and days. She since the intital stroke lost all movement in her right arm ..her speech is imparied and although she understands alot of things there are some delays there also.
She is improving with her arm ..she can lift it now ..and can lightly squeeze our fingers. She just got let go from the pediatric unit on night passes so we've brought her home and then we go back there during the day for physio and speech thearpy. Wednesday the 13 th of May she is scheduled for surgery. To say we are scared ..is to say the least. Terrified. We have 6 children ..Mike is the youngest. We've never been threw anything like this before .....we are working with the doctors and the Nuro surgeon who hopefully know what they are doing. Mike goes for another MRI on thursday ..she's had several but none since last week.
We are hopeing that we can get some words of encourgament. What should we expect after surgery. Will her speech be worse ..will it takes weeks again to get her to this point? It's on one side now ..what will happen in the future ..they say they'll do regular anigo's to monitar that ..but ..well ..any help you can give us would really be appreciated.
Thank you so much for building a site like this ...who knew ...
The Baird Family

Thank you so much for your post. We are gaining more and more hope by reading everyone's storys and understanding this better. Again ..thank you so much for this website !

We have been told so far that Mike has Unilateral Moyamoya. One side. That they will monitor her every 6 months and then every year to see if the other side ever becomes affected and said they could operate long before she shows any syptoms ( true we hope)

As of right now ..it's good. They are saying they are amazed how much blood flow the other side is compinsating for. Her stroke was on the left side and has affected her right side. Her vision is okay.
Last week she couldn't move her right arm at all and had a lot of weakness in her rihgt leg. She had trouble and was mixing up her Yes and No's. The first answer was usually the wrong one. She was given a communication board and could understand what we were saying ..and would point to her answers or things she needed. Last week she was having migranes daily ..up to two or three. They said it was probably the stroke settling down. Since last Friday she has been migrane free and chugging right along. She can lift her right arm above her head ..she can lightly squeeze with her right hand. She can bend her arm at the elbow. She walks good ..some weakness still ther and a lil clumsy but nothing major.
We see the progress she is making and are so excited and happy things are getting better ..but with surgery on the 13th we are worried something will go wrong...or that she will be worse after surgury ..have another stroke. Ect ect.
We meet with our Surgeon. ( Dr.Metha who were told trained under the man that invited this surgery for Moyamoya) on Monday the 11th and then surgery is the 13th. He said he wanted to wait awhile after the stroke because he said the brain was too " hot" to operate and it would increase the risk of stroke if he did it too soon. She had her first major stroke on the 17th of April and I believe she was having TIA's ( the doctors won't class them as that ) for about 10 days afterwards ..she was up and down.
She is working really hard at physio thearpy ..speech is a lil harder for her ..she clearly gets the thought and knows exsactly what she wants to say ..then gets frustarted because the brain can't send the message to get it out and the thought is lost.

Is there a chance that this could just stay at one side ..and never have a problem with the other side ?
I read something about anurizums and moyamoya..are they related at all?
Mike's Grandma on her Mothers side died at 59 of a major stroke which was a blockage in her neck and sent a clot to her brain. Her bio Mother at 35 had a major stroke from anurizums and bled into her brain for 3 days and then had a major stroke which she has minnimally recovered from. She went on to have 3 more craniotmy's( no idea how to spell half this stuff so please bare with me) and clippings for more anurizums. They are getting genetics involved to hopefully see if this is all related or not.
A comment our surgeon made a couple weeks ago after Mike's angigram was .." I'd bet 20.00 this was moyamoya ..but I'd not bet 2000.00". Meaning ..he's pretty sure ..but because it's so soon they aren't seening the puff's of smoke yet. I guess the up side is they caught it early. Regardless they are doing surgery they said.

Hopefully ..and I know it's a crazy thing to wish for ..but that the MRI will show more on Thursday and they'll confirm this is Moyamoya 100% and we can feel a lil more at ease.

I want to thank you for your post ..It's hopefull knowing there are other children and adults out there with the same disease and they are recovering from it.
We are very scared ..and very tired. The hospital is not an easy place to reside in ...but were making it threw.

Thanks so much
p.s
The wish foundation has given Mike a wish ...she asked to go on a Disneyworld cruise. I'm wondering ..do those who've suffered with moyamoya have additional motionsickness problems ? Are we crazy to think that she can fly and go on cruise ships and be up to doing those things in a few short months ? The surgeon said go ahead and plan to go as early as August ...I think ..AUGUST ?? Are u kidding me ? Does this make sence to you or anyone ?
Take Care
The Baird Family

Dear Carmel,
I am sorry to hear about everything you are going through with your daugther and wish you the very best. I am from Canada as well and my boy had his surgeries at the Alberta Children's hospital in Calgary about 2 years ago. He was 6 1/2 when he had his first stroke which happened at school as well. It all started with numbness in his left hand, which over a couple of hours progressed to the arm, the leg, then sudden headache and seizure. We live in a small town in BC but after ruling out menegintis he was transferred to the ACH where he was diagnosed within 24hours with moyamoya. We were at the hospital for about 16 days, then were released until surgeries which took place 3 and 4 months later.  I was amazed on how well he recovered from surgeries and so quickly. The first one was a little bit more challenging as he suffered an other stroke the next day on the opposite side of surgery but the second surgery we were out in 4 days!
Today he is doing very well. Surgeries were very successfull. He still has residual problems from the stroke (loss of fine motor skills with left fingers and delays with learning at school) but overall his progress has been tremendous and he has been stroke free ever since!!!
 
I know that the waiting is hard and the not knowing even harder but you need to keep faith that everything will be ok.  Children are very resilient and I am sure that your daughter will give you the strength that you need along this journey.
I will send you a personal message with my telephone number as we are almost neighbours! You may call me should you wish to ask more questions.

All the very best!
gazou

I am much older, but I had many MRI's that didn't show MM.  It wasn't until I had an MRA that it was VERY apparent!  On either the MRA or the MRI, the puff of smoke also was not visible for me, which I believe indicates a different stage of MM.  However, the bilateral blockage was very apparent on the MRA.  My memory is terrible and getting much worse, but I believe the Dr. in Asia that discovered MM may have been the one that broke it down into phases or stages.  I'm sure someone on here will know!  There are several members here with MM that have also battled aneurysms.  The best of luck to your family and have a great time on your cruise!      
Michele

Hi Carmel,

My daughter who is 4 years old, had her bilateral surgery a month ago in Boston. The surgery was difficult and she had 2 strokes, but as everyone is explaining here, kids have a great capacity of recovering. You would not believe how she was the first week and how she is now … your daughter is very young and she will recover very well. I perfectly know how you are feeling now because I have the experience very fresh in my mind, but as many others have advise me before, you must try to take care of yourself, days at hospital can be exhausting …, please don’t hesitate to contact this site for any question during this difficult time, it was a great help for me, and I’m sure that it will be for you too.

All the best for your family.

Regards,


Paula   

Thank you so much.

We are happy to anouse that we are getting the weekend away from the hospital and will be hopefully haveing a " warm" weekend at home prior to surgery on Wednesday.
Mike had her MRA today and I'll have some news about that tomorrow morning. They didn't use a dye in her arm ..as they had trouble getting the IV in ..poor girl. Anyway they decided to not look at the neck and just look at the recover and what's going on with the brain itself since the stroke.
We were driving home tonight and I put in her CD. Mini pop kids ..they are giving them away at McDonalds right now with Happy Meals ...I don't weather to bless them or curse them ..how many times can you listen to Cindy Louper sing girls just wanna have fun! lol
Anyway ...she was singing and dancing in her seat and she yelled out ..MOM I CAN REACH OUT MY FINGERS ! and sure enough she was lifting both arms above her head and grovin along and her hand extended all the way out. It truly does amaze me what kids can do ...and how quickly things are all coming back.

Thank you for the support and words. It means so much to our family to know we are not alone.

The Baird Family

Hi Carmel, I send you a lot of strength during this time, think that you are not alone and a lot of people will be thinking of Mike and all your great family tomorrow ...

All the best

Paula