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.

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.

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