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Camp and HIV+ child
Jun 8, 2005

Hi, I have been browsing your site and don't know where exactly to post my question. Your forum seemed to be the best fit.

When we adopted our daughter shortly after birth we knew she was HIV+. She is now 13 and has had absolutely no health problems. She has been on HAART since 1996 (maybe 1997?) with consistently undetectable viral load. Her CD 4 count was always within the normal range (of non-HIV children) but, as our doctor explained, naturally decreased since infancy. It is now 925 (42%). She is on once a day Truvada and Sustiva.

She desperately wants to go to camp this summer with her girlfriends (it is a 6 week camp). We are in quandary. The camp requires that all medication be dispensed through the camp nurse. Obviously none of her friends know about the HIV. We live in a very small suburban community and public knowledge of her condition would be devastating (we commute into the city for her HIV/pediatric care).

As I see it here are our options: 1) stop therapy for 6 weeks and disclose nothing to anyone and start up again after camp or 2) disclose to the camp and pray that there are no leaks and that the camp nurse doesnt freak out.

Option 1 scares me because I fear she will not get to undetectable again. Option 2 scares me because all it takes is one slip and her privacy is destroyed. What are your thoughts? Thanks, Stressed out mom

Response from Dr. Wohl

What a quandry! This ia a tough decision that you will ultimately have to make but I will tell you what I would do.

First, BEFORE camp, I would meet with the camp nurse and director. You would explain to them the situation and express how serious you take maintaining your daughter's confidentiality is. You would also have with you a letter from her physician explaining that your daughter is not infectious as long as no one has sex with her, shares needles with her or is birthed by her. It should also indicate that casual contact is not a concern and that no special precautions are necessary should she get injured as the nurse should be practicing universal precautions. Lastly, the letter must report that she is very well and in a state similar to "remission" of her HIV.

I would ask if they a) can pledge to maintain her confidentiality and b) work out a way that she can take her medications every day without fail without being conspicuous. IF they can not, even after reminding them that the ACLU would love to take this one on just on principle, then although it will crush your daughter, she should not go. For one, a break in therapy is too risky and she will be devastated if her HIV status is revealed to her friends before she is ready.

You knew this would eventually happen and it has. As she gets older maintaining her confidentiality gets more challenging. At some point, it may become impossible. Does she have access to a support group for teens with HIV? These are rare nowadays but even just a few young people living with the virus she can share with can be supportive. As you know, there are also camps for HIV+ kids but that may not be what she wants or needs right now when she is trying to fit in with her crowd.

I hope this helps.

DW



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