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Liz Grimes

Children & AIDS & treatment
      04/06/00 05:18 PM

am the mother of a 13 yr old prenatally exposed son, has had an AIDS diagnosis since birth. He also has several other problems that may or may not be related to his AIDS diagnosis. He was one of the first children placed on the AZT protocols in the late 80's.He has been on medication since. We made the decision several years ago to pull
our son off of his medications when his behavior deteriorated to the point of not being able to control him. He immediately improved in his behavior. Health issues did not change much. We did change medications after about a month vacation.He has been on every combination possible. Side effects and resistance would force us to change. Then
the coctail was approved for pediatric use. His has been on the "cocktail" since November of 98. We started seeing a drastic decline in behaviors in the spring. He has been hospitalized since 10-1-99 to try to find meds that would control his agressive,mean behaviors. Last week we made the decision(along with HIV specialist and behavior
specialist)to pull his HIV meds to see if they are the cause of his problems. He has had 3 consecutive days of improved behavior. If behaviors continue to improve, we will keep him off of his HIV meds. For us, it was not a difficult decision--we are firm believers in
quality of life over quanitity of life. If you are miserable (and our son is) and everyone around you is miserable, why bother with meds that only make things worse? Remember, M.D. stands for Medical Doctor,
not Medical Diety, they don't know it all. I just found this board, but am glad I did. Has anyone else experienced this kind of response to medicines?

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* Children & AIDS & treatment Liz Grimes 04/06/00 05:18 PM
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