more on TREVOR

Unfortunately we have to wait till October for a geneticist, but I think the neurologist will be sooner. I think what happened was that the attending physician, which is our regular pediatrician looked at the MRI, didn't see anything abnormal, passed that info. onto me and left it at that. All MRI's are reviewed by a neurologists, and after Trever's was reiviewed the report was sent to the attending physician, but she never read it. I can't even tell you how shocked I was to hear there was a problem, then to come home and look up what they suspect the problem is. HORRIBLE! However, having said that, knowing 18 months ago wouldn't have changed much, if Trevor has this disease it is fatal and there is no cure. On Monday I am calling to see if we can schedule his MRI ASAP. We will keep everyone posted. Thanks for keeping us, especially Trevor in your prayers.

TREVOR

I just found out today that Trevor is suspected of having Adrenoleukodystrophy. He had an MRI 1 1/2 years ago, and at that time we were told by the attending physician that everything looked normal. Trevor has had a lot of bowell problems, during a routine follow-up with his gastrointestinal specialist (Dr. Kaddu)the Dr. mentioned his MRI and asked if we had followed up on his adrenoleukoldystrophy concern. I told him I was never informed of that diagnosis. Needless to say I am very upset. I am scheduling another MRI for Trevor to see if there is any change in his brain. http://www.ninds.nih.gov/disorders/adrenoleukodystrophy/adrenoleukodystrophy.htm