My adopted daughter was born to a HIV positive mother. She was born about 9-12 weeks premature and was in NICU for many weeks. Her Mum did not receive any ARV's whilst pregnant as she was also ill with TB. Her Mum died a few months later. My daughter had a huge count of malaria and also had NEC in the first few months of her life.
She was tested postive for HIV with a PCR test when she was about 3 months old and had a CD4 count of 88. We started her on ARV's and three months later her CD4 count was over 2000. (Is this huge jump even possible?!)
For the first year of her life she was weak and often ill with pneumonia....but since then (she is now 27 months old) she has been totally healthy.
She has never had oral thrush, an ear infection - nothing. In fact, she is the healthiest of all 4 of my children and doesn't even catch coughs and colds.
She takes her ARV meds brilliantly.
Obviously, being my little girl, I have always hoped that she didn't have HIV - but these last few weeks I have started to doubt her status even more. Here we can not get (and have never had) a VIRAL LOAD test. All the Hospital does in CD4 counts (and the machine is very unreliable in my opinion) and she has only ever had one positive PCR test when she was 3 months old which I was not present for.
A few weeks ago, I took some other children to have a PCR test and was appalled at the innacurate 'administration' aspect of it. The book used to write the details of the patient is HUGE....like about 80cm in length and the details are written accross the page and margin where the 'lines' do not match up....the results are at the end on the opposite page. I saw a nurse give the wrong result (as she had misread due to the lines jumping at the margin) and I told her and she refused to double check! Then I saw her write out 4 PCR cards for the children I took (with numbers only, no names) and then pick up the wrong child for the wrong card! I told her and then she checked....but most people would not be 'looking over the nurses shoulder' to double check her abilities? I witnessed just how innacurate the recording and reporting of the PCR tests are.
It got me thinking how often this happens and how often children are misdiagnosed......
I got home and did a Determine Rapid test on my little girl. It was negative. I then did 6 more, and they were all negative.
This morning I went to town and bought 3 different HIV testing kits -
- Determine HIV 1/2
- Uni-Gold HIV
- (SD HIV 1/2 I did all three tests on my daughter and all three came back negative!?
So - my questions:
- Is it possible that the ARV's will somehow 'mask' HIV in her blood and make her test negative when she is in fact positive?
- Can anything else 'mask' HIV to give her a negative result (she is totally healthy but maybe there is something we have not conisdered?)
- Do you know of anywhere close to Tanzania where I can get an actual VIRAL LOAD check done or some form of more relaible test (Western Blot?) to see whether she is actually positive?....or would there be any use in this as I guess her Viral Load may be undetectable since she has been on ARV's for so long?
- What harm/side effects could she have from taking ARV's for the last two years if in fact she is HIV negative?
- What can I do to find out if she is postive or negative? I am still uncertain as to whether she is positive or negative. She has had 10 negative rapid tests in the last 3 days....and only ever one positive test (a PCR) which was two years ago and who knows how accurate the recording and taking of this test was?
I have written to SO many Doctors and HIV Specilaists and their answers are SO vaired - from she is definately still positive to definately negative! I don't want her on ARV's if she is negative - but I don't want to stop them if she is positive....
Advice would be great....
Thank you so much, Amy Hathaway
This is a complex case that requires more sophisticated testing and consultation with a pediatric infectious diseases specialist who also has expertise in pediatric HIV infection and testing.