Oct 31, 2000
Shortly after my son was born he became very ill and eight months later I learned that we carried the HIV virus. He initially had a viral load of over 3 million and only 2 T-cells. We began him on a regimen of azt/3tc in 1997. After 6 months Dr.s added ritonvir which he was unable to tolerate. Finally went on ddI,d4t and Viracept(current regimen) which he has done wonderfully on until recently. Although he has never been undetectable his viral load has hovered around 30,000 until the last three counts that has shown his viral load has been climbing. It is now 167,000.Although he has a high viral load his cd-4 has been strong for over 3 years,never below 1,800 and currently is at 2,130.Genotype testing says he is resistant to Azt, Abakavier but not DDI, d4t. I have a couple of questions. His Dr. is suggesting we go on 4 drugs -- maybe Amprenavir,sustiva and 3tc and another nuke, not sure which one just yet. Are these drugs optimal and safe in your opinion? He is a 4 year old little boy and treating him with so many potent drugs with possible serious side-effects is very frightening.Are there better medicines in the pipeline that I should search for or hold out for? Why not just three new drugs? My husband wants to take him out of state to a children's research hospital. I am not sure that is the best place to go for a second opinion. Does a research hospital have access to drugs that our local Dr. does not? I appreciate any wisdom you can give me and value your opinion. Thank You.
Response from Dr. Pavia
I will ask the coordinator to also post your question to the women and children's forum, where we have some outstanding pediatric AIDS experts. However, since my approach may be a little different, I will go ahead and make some comments. In treating children, we are acutely aware of the possibility of running out of drugs, and we have fewer drugs to work with. Therefore, when to switch becomes a balancing act. We all agree that in children who are getting sick, whose CD4 count is falling, or who have a new opportunistic infection, it is time to change.
However, many kids, like your son, have viral breakthrough while maintaining a great CD4 count. This happens in adults as well. We look very carefully at where the viral load is relative to where it started, in your son's case, at 3 million. This is where the choices get tough. There are purists, who feel that you must suppress the viral load at any cost, because we know that otherwise the virus becomes more resistant. Then there are the pragmatists, who try to get as much mileage out of each regimen as possible, so long as the CD4 count is not falling and other clinical problems are not cropping up. I tend to be in the pragmatist camp. Your next regimen will probably work well, but after that one fails, the choices will get thin until new drugs are out.
However, once you decide to switch, I think it is usually best to use a regimen that will work. In kids who have already failed one or more regimen, that often means four drugs. I like to use viramune or sustiva in this setting, and right now I would be tempted to combine it with Kaletra (lopinavir/ritonavir), a new protease inhibitor, along with nukes.
Are these drugs safe long term in kids? We don't know as much as we'd like, but we have been encouraged so far. We are seeing problems with fat changes and changes in cholesterol, just as in adults, but compared to the ravages of untreated HIV in children, this seems to be a fair trade off.
Should you go to a center that sees lots of children with HIV? By all means. It is always a good idea to get another opinion, as well as to meet other parents and learn what resources are available. A center with a lot of research going on may offer you access to a clinical trial, which might be appealing. However, getting another opinion does not mean you may not want to keep working with your doctor, who you know and your family. If you let me know where you are or could travel, I can give you some names. Which center to go to depends on where you live, or where you have family. Your doctor probably knows who the regional gurus are, and don't be afraid to ask her or him. Most of us are happy to ask for help and to use as strong a team as we can put together. Good luck to all three of you
Andrew T. Pavia, M.D.
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