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HIV related mental decline in children

Nov 18, 2011

I have a beautiful 8-year-old son with an AIDS diagnosis. He joined our family three years ago. When he came home he was bright, loving, involved, and active. He has always been celebrated and supported by his family and the rest of his personal community.

In the past year we've noticed a significant change. He can't complete certain tasks that he used to be able to do easily. He loses things constantly and can't find them. He struggles with coming up with words to complete thoughts and ideas. His writing has gotten sloppier. He no longer interacts with his peers and even his family. He is doing very bizarre (and dangerous) things. I'm starting to see changes in his personality. These changes have all been significant and he notices them as well.

I've sought care for this backslide but I don't think our medical team has much experience dealing with HIV+ children, especially those that have experienced such an advanced disease. His psychologist diagnosed him with ADHD. The neuropsychologist showed that he is significantly impaired in certain areas, but because he has no baseline test she doesn't think it's possible that he's declining. She is treating it like ADHD and diagnosed him with cognitive impairment due to illness. (She does acknowledge that HIV has played a factor in all of this.)

I do not think it's ADHD. Everyone that's known my son for a long period of time has noticed this significant decline. The organization of his thoughts, his communication, and his social interaction have changed dramatically. Our infectious disease specialist doesn't know what's causing this.

Is there anything else that we should pursue? He's got an undetectable viral load and high CD4 count. That said, it's my understanding that HIV can still affect the brain considerably even with effective treatment. My son is slipping away from me mentally and I have no idea what to do. Would a CT scan be appropriate? A neurological evaluation? What should I be asking for from our doctor?

Response from Dr. Fawcett

Thanks for writing. I'm sorry to hear about the changes your son is experiencing. HIV affects the central nervous system which in turn impacts motor, spatial, and cognitive development, even in children who are asymptomatic. Studies show that clinically stable HIV-infected children have more frequent behavioral problems and lower developmental and cognitive scores than established childhood norms. Among these symptoms are anxiety and hyperactivity, which can be difficult to differentiate. I would recommend a consultation with a psychologist or neuropsychologist who specializes in pediatric HIV. Such expertise is necessary to sort through the intricacies and nuances of behavior to determine the best intervention(s) for your child.

Good luck.


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