Our appointment with the pediatric infectious disease doctor yesterday went well. We reviewed the results of all of Victoria's blood work and things look very good. Victoria's viral load is lower than we thought, her immune system is strong and functioning normally and it looks like based on the genotyping that our options for medications are good. The genotype testing takes Victoria's blood and tests it individually with each HIV medication available to see which ones will work best for her. The good news is that she does not have any resistancy to any of the drugs and the virus responded well to all of the medications. This means we will have much more to choose from when starting medication.
Since all of the results were so good, our doctor's felt we did not have to rush to start medications. The plan is to give Victoria another month of being home and adjusting to her new life and family. Once we start medications there is no going back. We have to be completely committed to it and it has to become part of our daily routine. Since medicine is not something that children usually love, our doctor doesn't want us to become the bad guy (aka medicine giver) just yet. We go back on November 2. At that visit they will have 2-3 different options for us to review. We will decide which will be best for us based on how many times a day we have to give medications, how many different medications, pills vs. liquid, what we can mix things with, etc.
I had a comment where someone asked if Victoria had been on medication in Ukraine, and I wanted to address that. To answer this question - no, Victoria was not medicated. They did do blood work on her every 3-6 months and because all of her tests kept coming back okay they did not start treatment. She also only has one kidney, so they were cautious about starting anything that might damage her kidney. We are actually grateful that they did not medicate her. If she wasn't so healthy I would have wanted her medicated, but because she has never been on medication she does not have any resistancy to anything. This is good because it gives us more options. It is also good because we can make sure she is also followed by the pediatric nephrologist so that we don't do any damage to her kidney.
I also wanted to clarify that some children with HIV in Ukraine are being treated. There were some children in Victoria's group that were on medication and some that weren't. Victoria was in a good orphanage where they had access to blood tests and good medications, not all of them do. I don't know exactly how the process works, but I would imagine children that are sick or have weakened immune systems or high viral loads are treated. Sometimes the medication is good, sometimes they have to use what they have or have to lower dosages to make it go farther. That may not always be the best choice, but it is what's available.
There is also some debate with children that have not yet been medicated and are doing well with whether or not to start medication. Once you start medication it is a long term committment because if you stop it gives the virus a chance to build resistance to the drugs and then they aren't as effective. If a child in the US is born with HIV they always start treatment, but with adopted children that have been medicated yet it is a decision that has to be made. After discussing things with our doctors, we feel that starting medication is the best decision for us. Victoria is healthy and I would like to keep her that way. The other thing that helped make our decision is that there is evidence that long term exposure to the virus can cause some issues with brain development. We feel like Victoria has enough going against her with being so premature, being drug exposed and being in an orphanage for 4 years that we don't want to add to that list of things that could hinder her brain development.
On that note - I have had a lot of questions about what we plan to do about school. This post is already pretty long, but I promise to do a post in the near future with some answers about school.
