Medicine for HIV is given in a "cocktail" where three or four meds are given to work together to combat different parts of HIV and how it is reproduced in the blood. By using meds consistently, even children who had a high viral load can become "undetectable" within a short time frame. This is the goal of putting someone on HIV medication, this "undetectable" status. This does NOT mean that the child or person is "cured" of HIV, but rather that the amount of HIV in the blood is so low that it is not detected by these blood tests.
Someone recently explained it like this: Picture in your mind a can of orange juice concentrate. If you dump that concentrate into a bathtub, it's EASY to find those pieces of orange pulp. If you dump it into a backyard pool, you have to swim a bit to find some of those same pieces. Without meds, the concentrated amount of HIV in the blood is high, and easy to find, but on a regular regimen of health and meds, it's VERY HARD to find those same "pieces."
Medicine in young children is usually in liquid form. There are about 20 different meds that can be used in combination in the child's "cocktail." Some of these need to be refrigerated, some do not. Some of these taste, unfortunately, HORRIBLE. I was blessed in that Olivia came to live with me taking her meds, all liquid, with no issues. And she was on the ONE that tasted VERY bad. I've heard from many that their kids can barely get this down. That this med is BAD and getting them to take it is a challenge. There are things that can help, and sometimes it's just a matter of getting used to the routine of taking meds in the first place. You can follow a bad tasting liquid with a "shot" of chocolate syrup, or a couple of their favorite candies.
Travel with liquid meds isn't as bad as you'd expect. Airlines have no issue with medicine that is in a labelled bottle. Simply carry it with you through the airport checkpoint, and have it out separate for them to look over. If it needs to be refrigerated, you can bring it in a small cooler with ice packs. Travel by car and you can easily purchase a plug-in cooler to keep meds cold on your way. If you go places such as Dis*ney World or other amusement parks, they have first aid stations with refrigerators where you can leave your meds for the day, stopping to use them and put them back until they close or you're done for the day. This makes it much easier than trying to bring a cooler with ice packs and haul THAT around. (Which I did for a couple years until we found out about the first aid station!!!) :)
Once a child gets old enough you can start "training" them to swallow pills. There is no magic age and I've seen and heard of very young children who are able to swallow LARGE pills (some of the meds in pill form are BIG.) There are many things you can use to work on swallowing: mini m&ms, tic tacs, baby aspirin, pieces of gummy bears, working up to jelly bellys, m&ms, etc. There are some meds that even when they can swallow pills, however, they will still have to take as liquids until they weigh enough to be given that med in pill form. We had finally switched all of Olivia's medicine to pill form and were LOVING it, when we had to change one of her meds and she didn't (and still doesn't) weigh enough for the pill.
(An old picture of how we did meds, we now have ONE pill box for both am and pm.)
Once a good cocktail has been found, doctors are EXTREMELY reluctant, and rightly so, to change ANY of these meds. Some reasons for change could be negative side effects, resistance, etc. We've only changed twice I believe. Once because a med was believed to have unknown long term effects and once because Olivia's neutrophil count was low and was thought to be caused by one of the meds.
We have been lucky in that we have not seen negative side effects. In fact, I haven't heard much about them in others as well. She did have a time where a med, now changed, caused her some redistributing of weight from limbs to the abdomen.
Honestly meds have become routine. Just a part of our day. Olivia is at an age now where I'm starting to teach her med adherence and help her to become more responsible with taking them herself. Each Saturday I fill a weekly pill box. There are large sections for am meds and pm meds. Prior to 7:00 am or pm, when she takes her meds, I fill up her syringe of her liquid med as well. She is supposed to watch the time and come to me at 7 to tell me she's taking her meds. I have my phone alarm set for 7:03 so that if she forgets, it will remind her and she'll take them. She usually remembers!
The times we both have trouble are when we're out of routine: out late one night, on vacation, etc. The phone alarm then is very important. If we are out late, or leaving early, I have a small collapsible cup that has a med container in the center for her pills. I also have little "caps" for the ends of syringes and will pre fill a syringe with her liquid med, place that and the cup in a baggie, put them in my purse, and we're good to go. If we don't have a drink at the time, we can fill the cup at a bathroom sink or drinking fountain.
That's really about it. Meds every 12 hours. Stick to that as close as you can (you do have about an hour "give" each way IF needed). Young children start with liquids until they can swallow pills. A good watch or cell phone alarm works WONDERS. :) Any questions???