If you do not want to become sick, you have to keep taking your medication. It's as simple as that. But taking medication your whole life and making sure you take it on time can be extremely difficult. However, it is essential that you do so. At the hospital, your doctor or HIV consultant will have given you lots of information. Because if you understand how the medication works, you will also know how important it is to take it. They are there to help you if you regularly forget your tablets or have difficultly taking them. If your mother has HIV and takes medication, that can also be a big support. Fortunately, lots of studies are being done into new medications. Research is also being conducted into how to reduce the number of tablets you have to take.

Linde Scholten (30), child psychologist

Despite the fact that many children cope with it very well, taking medication is more of a burden than you think. The pills are quite large, which also makes it difficult. You have to remember to take them every day at the same time. This tends to be easier on school days than during vacations or on the weekend. That's when problems often occur. They go out and forget the tablets that they have to take in the evening. That can cause long-term problems. You won't notice anything in the short term but things will be going wrong in your blood, which is the dangerous thing about HIV.
Sometimes it's not too bad and you can get them back on track with a few pieces of advice, but sometimes it's harder and more treatment is needed.

Annouschka Weijsenfeld (42), children's HIV consultant

If youngsters have difficulty with it, we hope they will tell us. We will never get angry about it. We can then look for a solution together. Sometimes this is relatively straightforward. For example if you suffer from nausea, this can often be remedied with dietary recommendations. Or you can change the time of day that you take the medication if that's a problem, so that you don't have to take the pills in the presence of others.
Stopping of your own accord is never a good idea and taking medication occasionally is not good at all. You can develop resistance. Then the virus 'changes its jacket', so that the medication no longer recognizes the virus and can no longer be used. Our main message is: tell us because there's a solution for almost everything!

Sibyl Geelen (57), kinderarts/infectioloog

Of de kinderen geïnteresseerd zijn in de medische details van de ziekte?
Enorm! De meesten althans. Maar dat hangt ook van het kind af. Het ene kind wil het globaal weten en het andere wil juist alles precies weten. Hoe het medicijn werkt en hoe het kan dat het virus resistent wordt als je de medicijnen niet gebruikt? Maar bijna iedereen wil wel graag weten wat hiv precies inhoudt, waar de medicijnen voor zijn en dat soort dingen. Ook jongere kinderen

Nike Nauta (57), HIV consultant

To begin with, you have to invest a lot of time. First, you have to explain clearly to the parents what needs to be done and only later to the children. Small children take their medication well, but around the age of twelve they start to wonder why they have to take it. Then they find out that it's HIV and take the medication so as not to get sick. But when they are about fifteen years old, they may get a boyfriend or girlfriend and things change, then the pills no longer fit in with their life. I always hope that they will get in contact with me. Then we can talk about it. Sometimes you find out for yourself. A boy came for a check-up at the outpatient clinic after four months and I asked him how it was going. "Fine!" he said. "I feel great! My mom always says that I'll get sick if I don't take my pills, but I haven't taken them for three weeks and I haven't noticed anything!" I was glad that he had said that because then I was able to talk about it with him. As children get older, it no longer fits into their schedule, especially if they have to take the medication twice a day. They go out and go to bed later. School, friends, everyone is watching everywhere, then it becomes difficult.

Dasja Pajkrt (46), pediatrician specializing in infectious diseases and immunology

In general, we can say that children tolerate medication better than adults, and that also applies to other diseases. If you take medication for your HIV infection and you start experiencing symptoms, such as gastrointestinal problems, or you struggle to concentrate, have nightmares or don't feel well in yourself, then you must discuss this with your doctor. Often there is something that can be done about it, such as switching to a different medication that has fewer side effects. In the short and medium term, the focus is on the simplification of the medication schedule. One tablet once a day. I expect that in pediatrics as well. More different drugs in one tablet. The burden of the number of pills is decreasing.

Henriette Scherpbier (59), general pediatrician

Not taking medication is a problem that is associated with children during puberty. They have so many other (fun) things in their head, so taking medication is put on a back burner. It can also be a form of protest. Or if they have problems with their appearance. For example, some children develop a different fat distribution and will look different. They develop a slightly slimmer face, larger tummy or big breasts. We call this lipodystrophy or lipoatrophy. You do not like that at all at that time in your life. So you stop taking the medication properly.
The HIV treatment is a tailored treatment. If the child's mother is also treated with HIV inhibitors, you take account of her experiences. If she has had a drug that made her very sick, then you have to provide a good explanation as to why you want to give that drug to her child. Otherwise she may not give it to her child. Why is it so important to take the medication on time? Because the combination therapy ensures that the presence of the virus is as low as possible in the blood. It is there, but so low that the tests cannot detect the virus in the blood. If you take various drugs at different times, the virus is not put under enough pressure and is therefore less well inhibited. It will then put on a different jacket as it were, which means that the drugs no longer work in the long term. We call that resistance.

Thea (49), mother of Gerald (14), both have HIV

Gerald was in the 8th grade and his liver functions declined slightly. His blood clotting time started to become abnormal and the doctors thought it would be better if he went on the medication to ensure stability. In that situation, you're more or less compelled to follow the advice of the doctors. Another factor was that the doctors preferred to start at the age of ten because starting medication during puberty is often met with resistance from the child. I didn't actually want him to yet. Why do I worry about it? Atripla® is a real drug. If you ever take it in the middle of the day, you notice that you're pretty stoned, and that worries me. Gerald and I take the same medication. I also dream a lot and therefore don't sleep well. There's a lot going round in your head. After an hour, you notice that your whole body is burning up. Then you become very drowsy. Each time is different to the next. You are better not to take it with food, but I do, or just before going to bed. It seems to be a bit milder with some food. Does Gerald suffer from side effects? He doesn't say much about them and we don't notice them much either. He's continuing to do pretty well.

Naomi (16)

I take medication but I have stopped temporarily because I am in therapy. I have a lot of negative thoughts, so when I take medication I throw it up again. I take Norvir®, Truvada® and two other drugs. I had to do that twice a day, but now only once a day, but I can't manage it yet. When I was little, I was able to take medication with a syringe. When I got older, my body stopped responding to the medication and I was given other pills. They were smaller but there were more of them, seven to eight tablets. When I got older, I got stronger medication. The tablets are really big and difficult to swallow. I haven't been taking them regularly since last year. Then the virus no longer gets used to them. Why don't I take them regularly? I think that I can also be healthy without the medication. When I take the pills I get nauseous, I think. I also have thoughts that we are all going to die at some point, so what's the point in taking them. I know that it's important, but I have so many negative thoughts in my head that I just don't dare to take them.

Jim (21)

I have never wondered why I had to take medication. I have always just done it. Yes, it was easy for me, except the Atripla®, I got side effects from that. Headache, tiredness, dizziness. I took it for a week. Then I told my nurse that I was suffering from those side effects and I was given a different medication.
Now I take Eviplera®, one pill a day. It doesn't take much effort, I do it automatically now. But sometimes I forget to take it. Maybe twice a month. I usually take my pill after dinner.

Ferdinand (14)

I have accepted that I have HIV and that I have to take medication so that I can live a long life. I take medication and don't get sick very often so I don't have to worry.
I now take Atripla®, once a day, at 8 p.m. When I first started, I found it difficult. I got dizzy and couldn't sleep well. Now, after a year, I'm used to it and don't have any trouble with the medication.
I almost never forget it. Sometimes if I have forgotten it, I take it at 8.30 p.m., at little bit later.
I don't have an alarm to help me remember. It's in my head. My family also helps. If I forget the time, then my sisters, brother or sister-in-law remind me. They ask me if I've taken it.

Jane (45), mother of Ashley (15), both have HIV

I'm always there when she takes her medication. We take our medication at the same time. But if she stays over somewhere or goes out in the evening, I send her a text to say it's time for her medication. I'm sure she'll forget it one day if her phone isn't on. Then when she looks at the clock, she'll remember, I suspect. My text message always reads "It's a quarter past seven".

Ashley (15)

Trizivir®, I take it twice a day. It's going really well. I never forget to take it. My mom always sends me a text saying "medication" and if I go away I have to take it with me. Then my friends say: "Oh yeah, your AIDS pills." They say it as a joke and I think to myself "if only you knew!" They think I have a liver disorder or that I take them for the enamel disorder on my teeth, which I do actually have.

Joyce (20)

I now take Kivexa® and Stocrin® and taking them is going great, I never forget. I take then at 10 p.m. When I take my pills I get very drowsy and my muscles go weak as if I were drunk or something. I've never been drunk, but that's what other people say. Drowsy and heavy. That passes by around 1 a.m. but after that I can't sleep very well because I'm wide awake. I do try to go back to sleep. I dream a lot and also have nightmares. I also notice that I'm still tired in the morning. From the pills that are in your body.

Marjee (18)

I now take Atripla® and it's going well. I have a very good CD4 count. Do I ever forget to take it? Sure, once or twice a month, not very often.

Maureen (16)

I still don't feel like I have HIV. I'm not often sick. There's not really anything different, except that I have to take pills every day. I take two types. In the beginning, it was difficult to swallow them. I knew nothing about pills and I didn't like them. It went well for a while and then not so well again. Now it's going well again. But it does vary.
My mom often says that I'm just putting it on. I always have such an aftertaste in my throat. I find it so horrible that it makes me shudder. My mom has to give me something to eat afterward. That aftertaste makes it difficult for me. I never forget to take it and prepare it myself. For when I have a lot going on in my head and I'm not paying attention to the time, my phone has an alarm clock. That helps.

Martin (17)

Kivexa® and Stocrin®. I take them before I go to sleep. Including when I stay over somewhere, which I often do. I can just take them quickly in the bathroom or somewhere. I swallow them with very little water, I can do that well. Yes, I manage to take the pills every day. Only when I go out do I forget sometimes, but not often. I'm a student now so going out goes with the territory. You have to live! I am allowed to drink alcohol, but I don't. I tried it once and was immediately nauseous. I won't do that again. I thought it was because of the pills. When I asked, they said that it was also bad for the effect of the pills. So I'd rather not.