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Posted by Kevin Low on August 05, 2003 at 13:59:54:

In early May my then six year old granddaughter had a stroke. She had not had any known symptoms that would have suggested any problems leading up to that time. When this occurred, I had never heard of children having strokes although the results were certainly similar as what I have observed in adults. Initially her right side was paralyzed (arm, leg, face and she could not speak). She was taken to Bronson Hospital in Kalamazoo Michigan. They obviously ran all kinds of tests with the final results being they were unable to pinpoint the cause. At that time, it was explained that one of her carotid arteries was much "narrower" than normal and it was suggested that perhaps she had a clot that built up here and then broke loose causing the stroke. Further tests revealed that she did not have the suspected clotting problem. Once released from the hospital she went to Mary Free Bed in Grand Rapids Michigan for intensive physical and occupational therapy. She was released from there on June 5th (her 7th birthday). She has been going to out-patient therapy since that time.

Thankfully she has regained control the muscles in her face and speech (which came back rather quickly). She can now walk fairly well with with a brace (and even run), but the progress on her arm and hand in particular, has been very slow. I have to say that I am amazed at how positive she has been through this ordeal. She does whatever she is asked to do and rarely shows anyone how frustrated I know she sometimes is.

On a follow-up MRI a week and a half ago, now nearly 3 months from the date of her stroke, they found that the artery had narrowed even further in that short amount of time. I don't think that was expected. Anyway, they now have diagnosed her with moyamoya. Her parents met with the doctor last Friday to discuss the results of the MRI where he explained the condition to them. They came away shocked and a feeling from the doctor that with this diagnosis, it was urgent to proceed with treatment for the condition. It was explained that an angiography test would need to be done first which would help determine which particular operation would be appropriate. Before the weekend was over, they were informed that they would be scheduled for first of the week (probably Monday - yesterday) to the Children's Hospital at the University of Michigan.

To make a long story short they never went for the test yesterday. Once they got through all of the "red tape" they were told that they were now scheduled for an initial consultation on August 14th. Then the angiography would be scheduled after that and the actual surgery after that. When they questioned the delay, it was indicated that because she was exhibiting no other symptoms, it was not necessary to treat it as an emergency.

I obviously do not know anything about this condition other than what I was able to read yesterday. However, it does seem like acting on this diagnosis should be handled as more of an emergency to me (which is the feeling her parents initially got from the doctor last week). She did not show any symptoms prior to her initial stroke. It seems to me that now that a diagnosis has been made, the longer you go without acting the greater the possibility of another stroke, especially if the artery is now even narrower than before. It has been almost 3 months since her stroke. It sounds like it could take several more weeks now that they have a diagnosis before they act.

I know the U of M is a renowned medical facility. However, since the initial consultation now isn't scheduled for over another week, we haven't been able to ask what their "expertise" is with regards to this condition. It would be great she could be treated somewhat locally. But if they do not have the experience with this very serious condition and procedure, I am not sure they are an appropriate choice. I am afraid perhaps they were referred there simply because they might be part of the same health network.

Am I letting my emotions cloud my thinking? From what I have been able to describe here, does a few more weeks before proceeding really increase the risk? It is not my decision to make, but I am looking for guidance from someone along the lines of a "second opinion" so if appropriate, I can advise my son and his wife of what I was able to find.

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