Wow. You have a lot to think about, and I am glad you have come here to ask for support and advice. There are hundreds of people here with shoulders you can lean on, and perhaps a few have even dealt with situations close to yours.

There is a very good chance that your daughter is not infected. And if she is not, there is no need for any medications. Although the stated rates of mother to infant transmission of HIV-1 run as high as 25% to 30%, most of the data comes from regions of the world where the rate of transmission runs higher than in the USA for a few different reasons.

But statistics do not apply to individuals. An individual is either infected or not infected, nobody is 25% infected.

Although false positive test results are possible on any medical test, the results can be reconfirmed in many different ways to make absolutely sure they are correct before any serious decisions are made. PCR is indeed more prone to false positive results than are some other test procedures, but the rate is still very low. Most viral load tests do not use PCR, they use a branched-chain DNA method to avoid the problems associated with PCR.

Infection with HIV-1 is a lot more serious than infection with the common cold virus, but it is very treatable today, and not as bad as many people claim it is. There is no need to rush into making decisions about your own treatment, nor treatment of your daughter. However, you should refrain from breastfeeding. It has been shown that pumping breast milk and heating it in a simple process similar to Pasteurization can inactivate HIV in the milk. But I am not sure if the benefits of breast milk over formula would make this worthwhile in the USA, where clean water for formula eliminates most of the risk associated with formula feeding in other parts of the world.

I can get you copies of these papers (and more), if you have any interest in that:

Verd S.
Pasteurization of milk from an HIV-infected woman.
Infect Dis Obstet Gynecol. 2006;2006:35482.
PMID: 17485800

Chantry CJ, Abrams BF, Donovan RM, Israel-Ballard KA, Sheppard HW.
Breast milk pasteurization: appropriate assays to detect HIV inactivation.
Infect Dis Obstet Gynecol. 2006;2006:95938.
PMID: 17093357

You are no longer alone. You will not drown. Take it one step at a time. You are blessed with a daughter, and you will both be just fine.

Keep talking to us here, and we will keep replying with any type of information you would like.

Dr Duke,

Thanks for the reply. Since you offered... :-D

Can you point me to any articles on the dangers of AZT in infants and children and/or information on children who test positive at birth but negative later on?

You made a statement: "There is no need to rush into decisions about my care or my daughter's."

Unfortunately, we're being forced to make decisions about her care immediately. If we don't, child protective services will charge us with neglect for not medicating her right away if she is indeed positive. And with as common as it is for children to test positive initially but then later test negative, I dont' want to put her on dangerous medication that will do more harm than good, especially if she is indeed negative.

Unless your county or state has some truly ignorant and abusive protective services people, I doubt they will force you into quick decisions here.

Prevention of infection is sort of an emergency. You don't want your daughter to become infected if she is not already. But if, God forbid, she is already infected, then immediate treatment is not called for.

Also, all babies and children should remain with their biological parents unless there is truly an abuse or neglect situation going on.

AZT is just one of a number of drugs that are now available for treatment of HIV. I am not a pediatric HIV specialist, I am an HIV researcher more focussed on vaccines and prevention than treatment research. However I do know quite a bit about drug treatments.

Because even single drugs like AZT or nevarapine can greatly reduce mother to infant transmission of HIV, there are very few HIV-infected pediatric cases in the USA and Europe. Most clinical trials for children's doses are thus based in the developing world.

I think we should take this one step at a time, and not rush to worry about things that we hope will not happen at all. The odds are greatly in your favor that your daughter is not infected and will not become infected.

With regard to infants testing positive and then negative, that is only if the test picks up the mother's antibodies in the infants blood. This is why nucleic acid (detection of virus genes) based tests are needed rather than simple ELISA tests for infants.

The idea of using single-dose drugs or a short course of drugs immediately after childbirth, is to prevent infection. You say your daughter is 3 months old, so you are well beyond the call for that.
Providing the single-dose or short course of drugs to prevent infection is sort of an emergency. It has to be done right at birth when the baby is exposed to the mother's HIV-infected blood.

Treatment of an already infected infant is a different story. If one test comes up positive, there should be several follow-up tests, not a rush to treatment. The tests for infection of an infant are not "viral load" tests. Although both are based on detecting virus genes rather than human antibodies against the virus, there are important differences. Although "viral load" tests are not the best for diagnostics, because they can give a false positive result as you note, the other diagnostic tests are designed to be less prone to false reactions.