I have a daughter who has struggled for years with something we could not exactly identify.  She started having significant problems in 2nd grade when I noticed that she had a dilated pupil.  We thought she had hit her head playing soccer and took her to the ER.  They did a CT scan, but couldn't find any injury.  We took her to an opthamologist who ordered an MRI(w/o contrast).  When the MRI came back abnormal, we saw a neurologist who said that she had had prenatal strokes. 

Around this time, she had developed some behavioral problems, but the neurologist assured us that the two things were not connected.  So we dealt with the behavioral things the best we could, until she got violent in 3rd grade.  We saw a therapist, and then a psychiatrist and she was put on all kinds of medication, which didn't really help.  The psychiatrist felt that the behavior was caused by the previous strokes, but the neurologist said that she probably would not have more, so we believed him.

She is now 10 years old. In May of this year, she started fainting.  She fainted anywhere from one time to three times a day.  She constantly complained of headaches and her "rages" continued.  At the end of May her fainting stopped, but she developed a weakness on her left side.  It got progressively worse over the summer.  We took her back to the neurologist, but he didn't seem concerned and said it was probably from the initial strokes and the small one she had a couple years ago.  We were in shock.  He never made it clear to us that she had another one when he saw her two years ago!!  So now I was frantic.

We got a new pediatrician who looked at her and her history and immediately suggested Moyamoya.  She has other symptoms that I've come across on various websites (such as temperature confusion, being lethargic a lot, having tingling in her hands), so this sounds like a good fit.  She had other tests that ruled out other causes for stroke. 

We had an MRA done today, and we will get the results on Wednesday.  I am very anxious to know the outcome.  She started physical therapy on Friday and was told she cannot play soccer for now.  She was devastated.  It would be nice to be able to tell her why she cannot do the things she used to do.  Does this sound like MMD to any of you?  Since this is the best place to find experts on the subject, I though I'd ask.  I would also like to know if anyone has heard of MMD causing emotional issues, and whether they lessened after surgery.

Thank you for listening.  I know it was long, but it has been very complicated (I won't even mention the insurance struggle we went through!)

  Gosh it sounds like your daughter has been through so much.You could definatly be on the right track.Diagnosis seems to be very difficult for Doc's who don't have any experience with it, it's such a sad fact that too many go too long without the correct diagnosis.We were very lucky ot have a neurologist who knew about moyamoya and she was diagnosed after her first stroke.I think some of ehr earlier sumptomes may have been masked by the fact that she aslo has down syndrome, she couldn't verbalise any problems she had, and it was normal for her to have physical delays.The symptoms your daughter is having definatly fit a moyamoya diagnosis.If you read some of the links you may be able to find a moyamoya specialist that you can send her films to for diagnosis, they will then follow up with an angiogram. My daughter is 9yrs old and in 3rd grade, ahe was diagnosed four years ago,and had her surgeries with Dr.Scott in Boston.She's had no strokes since her surgery,this is pretty amazing too us because she was very unstable at the time of ehr surgeries.She's had several strokes, one very severe which left her like and infant.She's now walking, talking, reading, and writting.This is the good news,  if the diagnosis is Moyamoya,she can be treated and improve her life.Please ask away if you have any specific questions this is a wonderful group of very knowledgable people.Keep us posted and many prayers that everything goes well for your daughter.And for you I'm sending a ((((HUG)))) because I know how hard it is to see your child suffer like this and feel so very helpless.
Mary Grace
my e-mail if you'de like to e-mail me anytime...
mgrace5@nycap.rr.com

emsmom,

I am sorry for all you and your daughter have been through.  Thank goodness you found a doctor willing to investigate this further -- it is amazing that a pediatrician knew to think of Moyamoya disease.  You would be surprised to know how many people with moyamoya were misdiagnosed time and time again.

I hope the MRA provides you with an answer.  The symptoms do sound very much like moyamoya disease.   If does turn out to be Moyamoya, at least there will be something that you can do to treat her.  Those who are able to see a qualified surgeon who specializes in moyamoya tend to have a very good outcome.    My daughter had surgery for her moyamoya when she was about 15 months old, and had a wonderful outcome.  She will be 3 this October.

Jenny (mom to Daphne.  www.daphnestory.com)

I am sorry to hear about your daughter I am new at this myself. I was diagnosed in March of this yr. and had my 1st surgery in May of this yr. as well. I am doing great ; I suffered for 2 yrs. plus. I had a stroke in 2004. I did not suffer any damage. I was very lucky. You are in good hands here. I am getting more involved and it is a great resource. Everyone has been there at 1 time or another. This is my second family. You can get more information here than on the internet itself and remember we all have MM.I hope everything works out for you.

Larab

I am so sorry to hear that you are having trouble finding answers about your daughter's condition.My 4 year old daughter was diagnosed pretty quickly after her stroke in December but we had alot of trouble finding a doctor that her insurance would cover that was familiar enough to do the surgery.Finally my persistence paid off and I found one that we felt comfortable with.She just had her surgery on Sept.7 and is doing wonderful.She also had mood swings and cried alot about everything.I kept asking the doctors about it but noone would give me a straight answer.Through research,I learned that strokes can cause problems with mood changes.Since her surgery,she still has times where she is moody and cries alot but it seems to be better than before.Hopefully,your daughter's doctor will give you the answers you need to take care of her.I agree with the previous posts,if it is MM,do not hesitate in getting her treatment.You have found a wonderful place here.This website has been such a blessing to me and my family.Good luck and God Bless.

Jennifer(Paige's mom)