Tonight my daughter who is 3 and has moya-moya and down syndrome was in the the front room. I heard a little bang (like she hit her head)  and the she started crying.  I went to check on her and she was sitting on the ground and I checked her over for the typical blood and bumps.  There was nothing and then I hugged her and she stopped crying.  I was sitting there talking to her and all of sudden she went into a blank stare. Her eyes were open but she did not blink.  I called her name about 4 times and finally she looked at me and gave me another hug and was started laughing. The blank stare lasted about 4-5 seconds.  The laughing and hugs are normal with her.  She then acted like nothing happened.  She crawled away and started playing with her brothers and has no problems since then.  I called my husband at work and  we talked about it and he thinks it might be a mini-stroke or a seizure.  I'm going to call her doctor in the morning and talk to him but I just want to know if this has happened to anyone else.  I just hate when stuff like this happens.  It scares me and I hate the waiting game of when is it going to happen again. 

Thanks,
Tish H.

Dear Tish,

My daughter, Lindsey has Down Syndrome and Moyamoya also.  She also occasionally gets the blank stare.  She gets that glossy look in her eyes, then she begins to drool a bit.  The doctors are calling it a TIA because after she comes back completely normal.  It usually only lasts for a few minutes.  Since her surgery in March 2010, it happens a lot less often but it has occurred.  The doctors told me that as long as her symptoms don't change from before surgery, it should be OK. 

It's all so scary when things happen because my daughter can't really explain exactly what is going on with her.  I just have to guess and assume things.  Sometimes I feel like I'm walking on the edge of a cliff and one wrong move will bring disaster. 

That said, surgery has been a blessing for Lindsey.  She is 100% better than before surgery.

God bless you and your family.

Corinne

Good luck with your daughter.

Hi, Not sure if my son who is 9 and has moya moya has had something similar.He has had two episodes of reporting that he is unable to see, then has collapsed ( I haven't witnessed either - once he was at school, and then today he was with his childminder). He has recovered both times within minutes and when checked out has had normal blood pressure etc. Has anyone else experienced anything similar? ::)

Every symptom/episode described in the above posts are all rather common for a MM patient, but should never be taken lightly. TIA's are always serious because they are often warning signs that a person is at risk for a more serious and debilitating stroke, so a patient should be evaluated immediately. There is no way to tell whether symptoms are from a TIA or an actual stroke, so you should ALWAYS assume that all stroke-like symptoms signal an emergency and should not wait to see if they go away, but rather seek medical attention/evaluation immediately.

A seizure is simply a sudden change in behavior due to abnormal electrical activity in the brain, and for some reason many MM patients are prone to seizure activity, and they come in a variety of forms. My niece would get like a rag doll and stare, and then suddenly seem perfectly normal again. She had to be put on meds for it. Some MM patients experience both TIA’s or seizure activity before and after surgery.

I spoke with my daughter's neurosurgeon this week.  She felt that it may have been a starring seizure. Her feelings where that is did not last long and it happened after she hit her head.  They doctor wants to do a MRI/MRA scan.  She has one coming up in the next few months so it is better to do it know than later.  Also Mattie is scheduled for ear tube surgery and her ENT has hospital rights where her scan will be done.  He agreed to do her Ear Tube surgery on the same day as her MRI/MRA so she will only have to be put under once.  Yea!  I was so afraid that we were going to have to put her under twice.  I will keep you updated.

Thanks,
Tish Hurd

Tish,

Glad to hear that your daughter is doing OK.  Prior to her MM diagnosis, my daughter was diagnosed with focal seizures, but more than likely they were actually TIAs.  With her, she would scream & cry & lose complete awareness of her surroundings, so I never "got" how her neurologist arrived at the focal seizure diagnosis, b/c she did anything but stare off blankly into space.  Now, at 10 months post-surgeries, she is still on the Trileptal for "seizures" but hopefully after her angio in Oct we will be weaning her off that med.

One thing to keep in mind regarding future surgeries our kids might require - anesthesiologists should be familiar with what my daughter's surgeon calls "moyamoya precautions" when adminsitering anesthesia.  As I understand it, these help to minimize the risk of strokes while under anesthesia. 

In our experience, many/most anesthesiologists are not aware of these - I know the anesthesiologists at the hospital I work at were not aware of them, nor, arrogantly, did they care to learn about them.  That is why now, for any procedures my daughter has, we make sure to schedule them at the same Children's Hospital where her neurosurgeon practices - she & her colleagues have educated the anesthesiologists there. 

Best regards,

Jennifer