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Siyayinqoba Beat It! 2004 Episodes7 –

Children on ARVs beat HIV

Nomandla Yako brought her son, Thamsanqa, to the Siyayinqoba Beat It! support group to share the difficulties she went through when Thamie was a bit younger. She went on to say that since he started antiretroviral therapy his health improved drastically. In the insert we also got to meet the nine year old Jady Grasland who had had horrible disfiguring facial warts until she started taking ARVs.

Jason Wessenaar: Molweni, [Hello,] Jason is my name and I welcome you to the Siyayinqoba Beat It! Support Group. Siyayinqoba means we can beat it. Each week I get together with other people living with HIV to talk about issues that affect our lives with HIV. Uma uphila negciwane le-HIV {IsiZulu} If you are living with HIV] or have a partner, a family member or a friend who’s HIV positive, this programme is for you. The ARV rollout is finally here. We should not be losing children to HIV. This week, we are talking about children on ARVs. Nomandla and Thamsanqa share their experience with us.

Children on ARVs

Nomandla Yako: My name is Nomandla Yako. I’m HIV positive with my five year-old son. His name is Thamsanqa Yako. When he was seven months he was very ill. I had to take him to the hospital, to the children’s hospital. They asked me to give the permission to do the HIV test. The results came back and they were positive. After that, they discharged him. He came back home. It was very difficult for me. I can’t even just tell… Okay, after two weeks when he came back from the hospital he became ill again, by the same problem. I took him to the day hospital, and the day hospital they took him to the Red Cross again. From the Red Cross they referred him to Conradie Hospital. That’s where I got the counselling from the social worker. He started on ARVs. It was February 2002. By that time his CD4 percentage was 11.4%. That was low. So, he had to start ARVs.

Dr Hermann Reuter: Hi, how are you?

Nomandla Yako: I’m fine thanks.

Nomandla Yako: When he was three months on treatment, he was doing very well. All the tests were good. The liver was good, the pancreas was good.

Dr Hermann Reuter: So now I give you for a month. This is our super king-size bottle of Cotrimoxazole.

Nomandla Yako: I want to see him growing up, healthy. When he started the treatment he had no side-effects at all, till now.

Dr Peter Saranchuk: Are there any problems today?

Nomandla Yako: The problem is the ear. It is leaking. The viral load is 900 still, the CD4 cell count is 1200 and something.

Dr Peter Sarachuk: Overall he’s doing well, so his weight is improving. So in November eighteen point one, January eighteen point seven, and now it’s eighteen point nine. So he’s growing, so this is good. Younger children, you know less than six or seven, we use the percentage the CD4 per cent, instead of the absolute count

Onscreen text: The CD4 cells as a percentage of total immune cells is used to decide when children need ARVs.

Dr Peter Sarachuk: In an adult, a CD4 count of above 200 is okay. Less than 200 is bad, and we start the ARVs. In a child, less than six or seven, we use the percent. So above twenty percent is okay, less than twenty percent, we must start the ARVs or they will get the severe infections. His CD4 count is thirty three percent, so that’s good, he’s protected against infection, serious infections. So, I’ll see you in a month’s time.

Nomandla Yako: He has to take two AZT capsules in the morning, one half of Nevirapine, one half of 3TC and five mils of Nevirapine. It is important for the mothers to explain the ARVs to the carers, because sometimes you have the person who helps you when you are not at home to give the treatment to the child, especially when they change the dose, because every time when the weight goes up, they change the dose of the medicine. So it is important to explain it all the time.

Support group

Nomandla Yako: As you guys saw in the video, before he started on the treatment I had to go in and out of the hospital, because he was sick, especially the first year before he was one year old. He had the problem with the diarrhoea, he was dehydrated, and I had to take him to the special doctor.

Onscreen text: Children may need to start ARV treatment if they get sick repeatedly.

Nomandla Yako: If I took him to the doctor later than at that time, he couldn’t be here with us now. Then, MSF came to Khayelitsha, so we were referred to MSF clinics, and there they started the programme of giving the treatment to the children. They started with the adults, then they followed with the children.

Busisiwe Maqungo: When I first met Nomandla, we met in the support group at Conradie Hospital. We both had the same problem: HIV positive babies. Then mine died at nine months, and Nomandla continued with the life, until later he got the ARVs. Nomandla had a positive baby who’s on ARVs, and who can pull up to twenty, thirty years old. Now my question was always like: “Why did my baby have to die?”

Jason Wessenaar: It’s always very painful when babies are born with HIV. And I’m sitting here thinking about why is it? Thinking about Waizi, my boy, he got the antiretrovirals quite late, and he just couldn’t make it, because of that. But I also think that there’s some kind of hope for a lot of children who are on ARVs, but I also know we’ve also lost a lot of kids to HIV because they did not have access to ARVs. And maybe it’s up to us to do something, you know, to speak to government to do something to speed up the process of providing ARVs to children.

Jason Wessenaar: What would we do to ensure that children with HIV have access to ARVs when they need them?

Vuyani Jacobs: When we buried Sibongile a few years, she died at the age of five you know how many times she went to hospital? She went to hospital more times than any other kid who is at that age who is living a normal life. And is such a way that she was known at the hospital and she died a very terrible death, because she was in a coma for a long time. So what we should say is that there was supposed to be testing, voluntary counselling from the onset that babies should not test with HIV. There’s supposed to have been programmes to put that process in place and then we wouldn’t have all the orphans who are living with HIV that have actually been abandoned somewhere else, we wouldn’t be having Sibongile Mazeke and other HIV positive orphans dying at the age of five.

Lihle Dlamini: I was looking for a community resource centre, and I used to visit the primary schools, and I would see a lot of children who are HIV positive. And the teacher would say they are losing many children to HIV and AIDS, because many of them die, and their parents cannot access antiretrovirals because they are not yet given free to children. You are very lucky that your children can get antiretrovirals, and antiretrovirals will give them the chance to grow up and be adults.

Nomandla Yako: Ndiva kub’hlungu xa uLihle esithi abanye abantwana abanaw’kwazi ufumana ii-ARVs kwezinye ii-province. Okokuqala, abantwana bebengafanelanga ubane-HIV… And bafanele benze njengezinye ii-provinces because aph’eWestern Cape if is’bhedlele siyazikhupha ii-ARVs kujongwa i-CD4 count yomntwana. Uba umntwana ufanelekile azinikwe, kujongwa nezinto ezithile ke. {ISiXhosa} [It’s so sad to hear Lihle say that some children will not be able to access antiretrovirals in some provinces. Kids were not supposed to be HIV positive, in the first place. It should be done the same way in all provinces. Because here in the Western Cape before the hospital gives antiretrovirals, they check the child’s CD4 count to see if it needs ARVs. And they check many other things too.]

Jason Wessenaar: What the Western Cape is doing, it’s great, but I really think this should go on to all the other provinces, it shouldn’t be limited to here. It’s not only kids in the Western Cape who need the medication, who need this kind of opportunity.

Prudence Mabele: Indaba yabantwana i-sideline ngurhulumeni and i-feeling yam ukuthi siqaleleni phantsi ngenye indlela sikhoneni silobheni nama-children’s organisations. Siyenzeleleni for abantwana bafumane i-treatment yabo. {IsiZulu} [The issue of children has been side-lined by the government. My feeling is that we need to start from scratch and find a way to lobby children’s organisations, so children can access treatment wherever they are.]

Jason Wessenaar: Re saya papatsong {Sesotho} [We are going to a break] We’ll be right back.

Jason Wessenaar: Re boetse reya le amohela mona ho Siyayinqoba Support Group. {Sesotho} Welcome back to Siyayinqoba Support Group, the programme for everyone infected and affected by HIV. We are talking about children and ARVs. The Siyayinqoba Team travelled to Maraisburg in Jo’burg, where we met Jady Grasland and her foster mother Daisy. This is one story that really gives us hope that we can all beat HIV.

Children on ARVs

Maraisburg, Johannesburg

Daisy to Jady: Ja, se vir hulle. {Afrikaans} [Yes, tell them.]

Jady Grasland: Ek is Jady Grasland. Ek is nege jaar oud en ek is HIV positief. {Afrikaans} [I’m Jady Grasland. I’m nine years old and I’m HIV positive.]

Valda Roberts (Principle, Newclare Primary): In 2000, Daisy came to me and she said to me, Jady has AIDS. I got the permission from Daisy to disclose it to the grade one teacher because I felt that we needed to prepare the teacher. She had fears because it was the first time you, as a staff, had to deal with a child with HIV.

Jady Grasland: Ek leer somme by die skool. Dit gaan goed. {Afrikaans} [I’m learning arithmetic at school. It’s going well.]

Valda Roberts: When the school started in January, you know, she met Jady for the first time. And at that time Jady’s face, her whole body actually, was covered with warts, and it wasn’t a good sight. Some children teased her.

Daisy Grasland: 2000 toet sy skool toe gaan, was sy vol vrate .En kinders wat na haar gekyk het sy’t altyd huil, huil huis toe gekom .En vir my gese Ma daai kind se dit en dit en dit.Ok, dan se ek maar net nee Jady “Los dit, los dit gaan net aan.” {Afrikaans} [When she went to school in 2000, she was covered in warts. And children would look at her, she’d come home crying when kids said things to her. It’d tell her: [“Don’t worry, just carry on.”] At that time Jady was actually very fragile, and any bump, she started to bleed.

Dr Ashraf Coovadia (Paediatrician, Coronationville Hospital): The one intractable problem that we’ve had with Jady is the disfiguring facial warts that she’s had, over the years that have just been getting progressively worse over the years. And we’ve tried a number of various medical, including surgical techniques to try and actually remove the warts and keep them off.

Valda Roberts: But Jady was so cute, she could always tell the children: “No, you wait, just pass me the gloves, just pass me the savlon, and I will clean my wounds, don’t touch me.” She’s such a courageous little girl.

Dr Ashraf Coovadia: Whatever we’ve used has often worked for a short while, and the warts have recurred until we started antiretroviral therapy about two years ago. Since we’ve started antiretroviral therapy the warts have literally just melted away. We put her on three different drugs, she tolerated the drugs very well, she didn’t have any major side-effects, her weight gain was quite good, her CD4 count which, for many years was very low, began to rise. Her viral load plummeted very soon after she started therapy. Her overall state of health has just improved enormously.

Jady Grasland: Die medisyne het my baie beter laat voel. {Afrikaans} [The medicine made me feel much better.]

Jason Wessenaar: What lessons can we learn from children who have been on antiretroviral therapy?

Support group

Prudence Mabele: After aqale i-medication iyehla lento ye-warts. Uba-healthy kancane, izinto ziyashintsha. {IsiZulu} [After starting medication, the warts on her face were healing. She became more health and things were changing]

John Vollenhoven: The greatest thing here is that ARV does make a difference in children’s life, and what we should do as people of South Africa, or people living with HIV, is press for more sites.

Vuyani Jacobs: I want to actually come back to you, sister Nomandla. I mean, I see Thami playing around with the cars, I mean it’s a beautiful thing, because I’d love to have a child actually. Tell us about how Thami was reacting firstly when he started the regimen?

Nomandla Yako: Zimnika ii-chances zoba ahlale e-healthy. Zenze i-viral load yakhe ibe-low, i-CD4 count ibephezulu because before njengokuba sendinixelele ebesoloko egula efumana ne-diarrhoea zonk’ezozinto. {IsiXhosa} [They give him a chance to stay healthy, nê? They keep his viral load low and his CD4 count high. Because before, like I’ve told you, before he was always sick]

Vuyani Jacobs: Abantu bebethetha kakubi ngee-ARVs ukuqala kukaThami uzitya ii-ARVs, wena ubuyithatha kanjani? I-reaction ebeyikhupha Mhlawumbi xa egabha, ekhupha, yonke lonto. {IsiXhosa} [People were saying bad things about ARVs at that time when Thami was taking them. How did you feel when he was throwing up?]

Nomandla Yako: Indaba ye-ARVs funeke uyithathe positive. Bayazithetha abantu besitsho ukuthi ii-ARVs zezababantu sebegula and ii-ARVs zi-toxic. Funeke wazi wena ukuthi zi-toxic entweni, obobu-toxic bunganqandwa kanjani? Uyaqonda? {IsiXhosa} [The issue of antiretrovirals needs to be taken positively. People will say things like: “Antiretrovirals are for those who are already very sick.” They say antiretrovirals are toxic. You need to know about this toxicity, and how this toxicity can be treated. Do you understand?]

Jason Wessenaar: This is probably a very difficult thing, but does Thami know that he’s HIV positive, and if not, are you planning on telling him that he’s HIV positive, that’s why he has to take all this medication?

Nomandla Yako: Uh, I shared this with Prudence. I said I will tell him when he’s eight years old, and Prudence said that eight years old is too late, so I should start now by saying simple words about it.

Anthony Fernandes: I’ve got a horrible feeling that kids mustn’t grow up feeling like: “I’m HIV positive, I’m very special and there’s something wrong with me.” But rather: “I’m HIV positive, it’s something additional I’m coping with, and this is how you need to understand and see it.” And I think that this would be so nice if you could start very slowly with your own kid.

Vuyani Jacobs: Him being on national TV, and him being a known face alongside you, don’t other children tell him that, or don’t other adults tell him that?

Nomandla Yako: One day when I came from work, my mom told me that Thami came in the house saying that the other child told Thami that, she said that: “Thami must use a condom because he has AIDS”, and Thami came back to the house and told my mom, and my mom told me and my mom was so upset.

Jason Wessenaar: Dr Nombulelo Madala, our resident doctor joins us after the break. Stay tuned.

Jason Wessenaar: Welcome back to Siyayinqoba Support Group. We also welcome Dr Madala, our resident doctor. Dr Nombulelo give us the most important things that a parent needs to consider before putting their child on ARVs.

Dr Nombulelo Madala: There’s a lot that a person can do to try and keep healthy and that could boost the immune system, and then, again, the immune system can make an effective antiretroviral agent. And then secondly, once it’s time now that that doesn’t work anymore, and there’s actually a need for ARV drugs, go into the whole thing, having all the information, having made all the decisions as to how you’re going to withstand some of the difficulties I had. And thirdly, I think parents should have that extra conscience that a child is dependent on the parent, so when they are making these decisions of whether to start the ARVs or not, whether to just stop them in the middle, they should be conscious that they are dealing with someone who personally has got no way of making their own decisions. And, at the same time, these decisions made will affect them. Now, in South Africa the guidelines are that antiretroviral medication for children should be started or advised to the parents when the percentage of CD4, or total lymphocyte count, is less than twenty percent, and most doctors are aware of that. And then the second criteria is when there’s obvious evidence of immuno suppression, which is called category B or category C. Category B is moderate symptoms, and category C is when the child is severely symptomatic. And each category has got its own sub-criteria which doctors and nurses dealing with HIV are aware of.

Vuyani Jacobs: You spoke about twenty percent and I don’t understand in a child how that would be?

Dr Nombulelo Madala: When somebody’s born, they have a certain CD4 level, and then as we grow up, the CD4 count comes down, until it stabilises at what is a normally acceptable CD4 level for an adult, at the age of about six years. Now, with adults, we use the absolute CD4 count to determine when the immune suppression is there enough for us to need antiretroviral medication so that’s why we talk about under 200 CD4 count. But with children, what works better is the percentage that we use, which is the CD4 count over the total lymphocyte count. And in a healthy immune system, the CD4 count over the total lymphocyte count should be above twenty five percent. And then between about twenty four and fifteen is like moderate suppression, and then severe suppression is under fifteen percent. But the criteria that is used specifically for starting ARVs is when that CD4 percentage is twenty percent.

Anthony Fernandes: How often do you come into contact with kids who’s been on a change over of ARVs and how long does it usually take them to get resistant to a drug?

Dr Nombulelo Madala: The issues of how often to change and then when might they get resistant are similar to issues with adults. Because the doctors change only when there’s a sign either that the drugs are not effective enough or that the side-effects are intolerable, and they can cause other complications. And broadly that’s what would cause a doctor to change medication. And then resistance, it would depend on issues of compliance. If a person is not complying then they might have resistance.

Jason Wessenaar: If a child who needs to be at school at ten to eight, ready or on the way to school at seven o’clock, how is that affecting them taking their medication on time all the time?

Dr Nombulelo Madala: Look at issues of when do they wake up? When do they have their morning meal? When do they go to school? So we’re now minimizing the chances of taking it at the wrong time in terms of meal times, and forgetting, because if you say it’s at nine, but that’s the time he’s in class, then that’s not the right time. So we sit down and look at all these tiny details until we come up with the right time. It’s important that people understand that, when it says, three times a day, it means every eight hours on the clock. If it says twice a day, it means every twelve hours on the clock.

Busisiwe Maqungo: Nomandla unazo zonke ii-records zento eqhubekayo emntwaneni wakhe… nakwabanye abazali niyayifumana lonto enjalo ubone uba umzali … ekwazini ngayo yonke i-history yayo yonke lento. {IsiXhosa} [I’m impressed that Nomandla has all her child’s medical records. Do you find that other parents do the same, that they know their child’s medical history?]

Dr Nombulelo Madala: When it comes to a chronic illness, something that’s not curable, one has to become a health fanatic, somebody who is very interested in health. And even as doctors, we have learned a lot from HIV. That is works to have your community, your sick people, knowing the details of their illness and of their medication. And we’ve also learned that it works to be able to explain to tiny detail what is going on in the person’s body, so that the person can understand what’s going on with them, for the purpose of adherence to treatment, motivation, and being able to control what the disease process is.

Jason Wessenaar: Siyabulela ku-Dr Nombulelo nakuni Support Group nani babukeli ekhaya. {IsiXhosa} [Thanks to Dr Nombulelo and the Support Group and viewers at home.] Things we should remember are:

1. Children with HIV do very well on antiretroviral therapy.
2. Care-givers must ensure that the CD4 cell count test is done to determine when the child needs antiretrovirals.
3. Care-givers have a special responsibility in ensuring that children adhere to the treatment regimen and monitor of side-effects.

We hope that you have enjoyed the show and are feeling the Siyayinqoba spirit that together we can Beat It! If you have any questions for us or for Dr Nombulelo, please contact us on the numbers on your screen right now. Thanks for being with us. Hofihlela bekeng e tlang {Sesotho} [Join us again next week] in the Siyayinqoba Support Group. Stay healthy and stay positive.

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