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Siyayinqoba Beat It! 2004 Episode 5 –

Children on ARVs

Treatment Literacy and drug adherence are two related requirements that improve the success of the antiretroviral roll-out. This was reaffirmed by the Siyayinqoba Beat It! Team. What however are the additional challenges that HIV positive children face in firstly accessing ART and then taking it correctly. To help answer these questions the team met up with Joyce Kepe and her daughter Caroline in Mbekweni, Paarl. Dr Nombulelo then joined the group to explain the important things caregivers can do to prevent infections in HIV positive children.

Jason Wessenaar: Dumelang, lebitso laka ke Jason.Ke le amohela mona mo Siyayinqoba Beat It! Support Group. {SeSotho} [Hi, my name is Jason. Welcome to the Siyayinqoba Beat It! Support Group.] Siyayinqoba means we can beat it. Each week I get together with my friends to share our experiences of living positively with HIV. Uma uphila negciwane le-HIV {IsiZulu} [If you are living with HIV], or you have a friend or a partner or a family member who’s HIV positive, Siyayinqoba is for you. We need to ensure that all HIV positive children who need ARVs should have them. But, many children have no access to ARVs. There is so much we can do to ensure that children who don’t have access to ARVs stay healthy for as long as possible. The Siyayinqoba Team visited Joyce Kepe, and her daughter Ritabile, in Mbekweni, Paarl, to learn more.

Caring for children not on ARVs

Mbekweni, Paarl

Dr Janine Karpakis (KIDCRU, Tygerburg Hospital): At this stage, she does not need antiretrovirals. She’s healthy enough for us to monitor her progress.

Joyce Kepe: Okay.

Dr Janine Karpakis: She’s not in any trouble at the moment, but in the end all our children will be on antiretroviral therapy, that is our ideal, that is what we’re working towards.

Joyce Kepe: Oko ke ehamba pha eTygerberg, zange aphinde agule andisokolise kakhulu. Ngaphandle kwalento imane iphuma kwezindawo, nangoku ndimthengele ezinye iipilisi. Sapha ezapilisi ndizithengileyo. Zisusile ezanto beziphuma apha ngoba ndamxelela ugqirha pha eTygerberg uba lomntwana uphuma ezizinto bathi akhonto banoyenza ngaphandle koba bandinike ezi i-vitamins. Ndazithengela ezi kengoku e-chemist. Ziyazinceda kakhulu kengoku ezizinto. {IsiXhosa} [Ever since she went to Tygerberg, she hasn’t been ill. She’s only had these things, for which I bought medication. They removed those things. I told the doctor at Tygerberg that the child has these things. He said there’s nothing they can do, except for these vitamins. I bought here these pills at the chemist. They help her a lot with these things.]

Dr Janine Karpakis: This is the Bactrim.

Onscreen text states: Bactrim is a prophylaxis against PCP (Pneumonia), a serious lung infection.

Dr Janine Karpakis: It’s an antibiotic. We give the Bactrim to the children to ensure that their lungs are kept PCP free, which is the other lung infection that we’re trying to prevent, ok? Now with the previous bloods, the staging that we did; Caroline’s doing incredibly well. And she’s Stage A1, okay? So Stage A is the best stage that we can get in HIV infection, it’s the most healthiest; all healthy children are Stage A. And then one is also the best.

Dr Ashraf Coovadia (Paediatrician, Coronationville Hospital): If we know that the children are HIV positive, then we can start to work with the parents, and say, right: “Your child has got this disease, we need to try and keep the child as well as possible, we need to try and do everything we can to keep the child well before the child needs antiretroviral treatment.”

Dr Caroline Bolton (Pre-natal HIV Research Unit, Chris Hani Baragwanath): Forty percent of children will present with AIDS by one to two years and die within their time period. Another forty percent will present at about five to six years and at that stage they will present once again with AIDS and die within that time period. The long term non-progressors, which is about ten percent, are the exception not the rule.

Jason Wessenaar: With proper care most children can stay healthy for over five years without ARVs. What has your experience been?

Nomandla Yako: As you guys know that I’m working at the children’s hospital, the Red Cross Hospital as a UCT counsellor as well as a therapeutic counsellor. Phaya ndibona abantwana, umntana agule ene-seven or ene-nine years. Abantwana kubekhona batestayo and bateste sebegula noko benida i-antiretrovirals but umntana abe ese-strongo ekwazi ukuzihambela. Lanto ibithethwa kwi-clip yinyaniso, abantwana bangakwazi ukuphila from ngelaxesha ba-infecteke ngalo till i-six years bengazinidi i-antiretrovirals. {IsiXhosa} [I see a lot of children some get sick at seven years or nine years. That’s when these children test, when they are already sick and need to go on ARVs, but the child would be strong and able to walk on their own. What was said on the clip is true; children can live from the time they were infected by their mothers until six years without antiretrovirals.]

Lihle Dlamini: Are there any cases where … nibona abantwana… {IsiZulu} [you see children] as young as two years who have to start on antiretroviral drugs?

Nomandla Yako: There are many Lihle. Abanye bangafumani kwa i-chance yoba bangene kwi-antiretrovirals ngenxa yogula kwabo because umntwana xa egula kakhulu even umnt’ondala akakwazi ukuqaliswa kwi-antiretrovirals funeke kwehle i-infection le ebenayo. [Some don’t even get the chance to go on antiretrovirals, because of their illness. When a child or adult is very sick they cannot start on antiretrovirals until their infection subsides.]

Jason Wessenaar: What nutritional support can be given to young children with HIV?

John Vollenhoven: Vitamin C is a very vital vitamin in children’s health, because that is the vitamin that keeps away the cold, the flu.

Busisiwe Maqungo: But it’s difficult with other babies, because maybe I don’t know if they’re very sick at that point, because sometimes ufumanise umntana uyagabha omnye akakufuni ukutya and lonto athe wayitya incinci uyayigabha even ne-treatment uyayigabha. {IsiXhosa} [you find that some children vomit, some don’t want food. The little food you give them they vomit, including the treatment, because that was the case with my baby.]

Anthony Fernandes: The more variety you have, the better it is for the body, and I know lots of people say: “Kids don’t eat vegetables”, and so on, but there’s lots of different means of doing it. You can either make a soup and then blend it, and you can drink it. And the same goes with breakfast. You can have soft fruit juices, like apple juice, that’s very simple and not so hard on the stomach, with a banana and you puree that and mix it in as well, and you can drink it instead of eat it. And in that way the kid acquires a different palette, it learns to taste different things even if you as grown-ups don’t necessarily eat it.

Vuyani Jacobs: If the child is taken late to the doctor and is now tested, when the child already has TB, already having a running diarrhoea, unstoppable diarrhoea, the child has already progressed into a very compromised immune system.

Busisiwe Maqungo: But the other thing, Vuyani, there is no way that under normal circumstances, umama ongekho aware of i-status sakhe nesomntana wakhe angavele athi nje ebona umntwana wakhe ephilile. Ewe it’s a good thing uba umntwana aziwe and especially umntwana i-status sakhe esemncinci so that into yenziwe kuse-early. {IsiXhosa} [a mother who is not aware of her child’s HIV status won’t take her child to the clinic when the child is well. It’s a good thing that a child’s HIV status is known, especially with a baby when it’s young so that something can be done earlier.]

Prudence Mabele: In many cases in the early nineties, I will tell ’94 I was already working at the Red Cross Hospital. Many women didn’t even know their status. So that is why it’s important that, even from day one when your child is born, immunisation, all of those things, so that even if they didn’t pickup the virus, you stand a high chances that already, as a mother, you have done other precautions.

Jason Wessenaar: We’ll be back after this break.

Jason Wessenaar: Re boetse re a le amohela mona mo Siyayinqoba Beat It! Support Group {SeSotho} [Welcome back to the Siyayinqoba Beat It! Support Group,] the programme for everyone infected and affected by AIDS. We are talking about keeping HIV positive children healthy before they need ARVs. The Siyayinqoba Team visited Nolisti Mbambato and her daughter Busisiwe in Khayelitsha to learn more about HIV infection in children.

HIV in kids

Khayelitsha, Western Cape

Nolisti Mbambato: NdinguNolisti Mbambato, ndi-HIV positive. Ndihlala aph’eMacassar koo-42. Ndinomntwana onguBusisiwe Mbambato naye u-HIV positive, uphila nentsholongwane. Ndeva ngos’ke kuguke yena ngo-1998, pha ekupheleni ngoo-October ngos’ke agule e-Red Cross. Kwathiwa u-HIV positive. uBusisiwe into eyayimhlupha is’kakhulu yayi-TB kunye ne-rash aph’emzimbheni echiza neendlebe ke. Ngoku ebengatyi i-ARVs ebenikwa iyeza ekuthiwa yi-Bactrim elimhlophe. {IsiXhosa} [I’m Nolisti Mbambato. I’m HIV positive. I live here in Macassar, number 42. I have a child, Busisiwe Mbambato, who’s also HIV positive. She’s living with the virus. I discovered it when she started getting sick in 1998 at the end of October. She was ill at the Red Cross Hospital, where they said she’s HIV positive. Busisiwe suffered a lot from TB, and a rash all over her body and leaking ears. Before she went on ARVs, she was given some medicine, called Bactrim.]

Natalie Clarke: I’m Natalie Clarke, I’m one of the senior medical officers working at Victoria Hospital in the paediatric department. We run a very busy paediatric service here. We have a ward for between twenty five and twenty eight full in-patients, looking after children with a variety of medical and surgical problems. On a Tuesday afternoon we have a clinic specifically for children who are HIV positive. The children that we see who are HIV positive present with a variety of symptoms, and it really depends on the extent and the severity of their disease. In our experience we see two things: firstly, the one recurrent respiratory-tract infections, whether they’re just bacterial infections, or whether it’s actually TB, a number of our children present with TB. I think it’s important for general, basic healthcare to come first, in terms of looking after a child who is HIV positive or a child who you suspect is HIV positive. And you can give a child as much medication as you like, but if you can’t provide them with a roof and shelter over their heads, clean water, adequate hygiene and a nutritious diet, no amount of medication is actually going to do the trick. If you’re not in an area where the water is fresh from a tap, then water needs to be boiled. I think the most important thing to start off with is to make sure that a child is well nourished. They need to be getting some form of protein.

Busisiwe Mbambato: Umthandazo wak’sasa. Nkosi sikelela abazali bam, bobabini babalulekile kum. Ndincede Nkosi ngalemini yanamhlanje ndibengumntwana othandekayo. Amen. {IsiXhosa} [As I pray this morning, I ask the Lord to bless my parents, for they are very important to me. Help me through this day as a child that loves, Amen.]

Dr Marta Betulo (Michael Mapongwana Day Hospital, HIV Clinic): My name is Marta Betulo, I’m a medical doctor working at a HIV clinic at Michael Mapongwana Day Hospital. This particular girl used to have recurrent chest infections, lung infections which have been frequently treated. She had been having some oral infections with fungus which was also a threat, and gastro, she’s been having diarrhoea, recurrent diarrhoeas now and then. But eventually after she passed through the counselling process here, antiretroviral treatment was started. And her condition has improved.

Nolisti Mbambato: Ngo-February ka-2002, waqalisa yena i-ARVs. Andizuxoka oko umntwanam wathi waqalisa i-ARVs zange aphinde abengumhlali waseRed Cross engazange aphinde agule qha ngoku into anayo ngalo mzuzu ziindlebe, nazo ziyekile uchiza qha umane ehamba for i-check-up eTygerberg for indlebe. {IsiXhosa} [In February 2002, Busisiwe started on ARVs and I can honestly say that she hasn’t been a patient of Red Cross since, nor has she been ill. The only problem was her ears, but now they’ve stopped leaking because she goes to Tygerberg Hospital for regular check-ups.]

Support group

Busisiwe Maqungo: Aba bangoku abazali nabantwana bona bekufane nje babe-grateful…wawungethemba okokuqala, wazi into yoba umntwana wakho unengculaza, uvele nje ungabinathemba. And the next thing: azakuxelela yona u-coounsellor is that umntwana wakho uzophila for three months, for six months abhubhe. {IsiXhosa} [Today’s parents and children should be very grateful about this whole thing and they should appreciate what the government and other NGOs are doing for them in terms of poverty, ARVs. Back in ’99 there was no hope in the first place. The next thing: the counselor will tell you your child will live for two or three months and then die.]

Jason Wessenaar: Why do some children born with HIV get sick so much quicker than others?

Lihle Dlamini: For instance umntwana kaBusi washesha wagula, do you think ukuti i-viral load yakhe yayi-high or i-CD4 count yakhe yai-low? Kutheni umntwana wakhe eshesh’agule? {IsiXhosa} [Busi’s child got sick very quickly. Do you think maybe her viral load was high or her CD4 count was low? Did this have an effect on her child’s quick illness?]

Busisiwe Maqungo: It has nothing to do with the mother’s viral load or CD4 because in most cases umntwana… [a child] doesn’t get infected while esiswini sika mama…[in the mother’s womb.] {IsiXhosa}

Nomandla Yako: Ungqinelana lento ibithethwa nguBusi. I-dependa emntwaneni ukuba i-immune system istrongo kangakanani na. {IsiXhosa} [In response to what Busi said, it depends on the child’s immune system, how strong it is.]

Vuyani Jacobs: Someone who has just been born and who have the virus with the ability to eat the immune system, and is living in a shack, is eating food in a condition like that, that will have much vitamins and so forth, much result to a quicker illness to the child.

Jason Wessenaar: I agree with you that the environment has a role to play, but people should still be encouraged to do as much as they possibly can, to live longer before they get ARVs. I agree with you, they can keep their kids warm throughout, they can give their kids vitamins, they can give their kids good meals, and I think that’s why we have programmes like this, so that wherever they are, they can learn about some of these issues and say: “In my little environment, none of us is living in Sandton, most of us are from those kinds of backgrounds or environments like those but we’re making the best of it.”

Prudence Mabele: The HIV works differently in everybody, whether they are a child or an adult. There are those that just, from day one, are just sick, they are so sick or in a few months later when you weigh them they are just sick with different things. As I worked at the Red Cross, I know for a fact that those things happen. But there was a child who went as far as eight years without any ARVs, the only thing she used to have was just a skin infection, nothing else. But I agree that they have to be seen by doctors, because, number one you could then have Bactrim, a flu vaccine, lama-vaccinations a-extra, lezi wenza sure ukuthi umntana ngeke avuke manje ane-chicken pox, avuke manje anani. Kuyo yonke lento {IsiZulu} [including vaccinations to make sure the child doesn’t have things like chicken pox and other things. It’s a whole] holistic approach. It’s the whole holistic approach again.

Vuyani Jacobs: Uyayithanda le-holistic approach yakho. {IsiXhosa} [You like this holistic approach of yours.]

Lihle Dlamini: I think it’s very important … ukuthi abazali babatshele abantwana ukuthi…[that parents tell their children that,] you have this virus and it does this to your body. So … ukuthi sikwazi ukuthi … [that we can] fight this virus, you have also to take care of your health if …ungekho phambi kwam. [you are not around me.] {IsiZulu}

Busisiwe Maqungo: I never heard of any role that should be played by the father, ingathi ngumama, ngumama, ngumama. Ootata benzantoni bona? {IsiXhosa} [everything is mama, mama, mama? What are the fathers doing?]

Lihle Dlamini: I think we have to teach our children at a very early stage to be gender sensitive. … uyabona wonke lama-videos esiwabonayo … ebonisa ubaba athathe umntwana am’se es’bhedlele… oobaba take responsibility for abantwana babo nabo. {IsiZulu} [In all these videos we’ve been seeing, not a single one has shown a father taking a child to hospital. It’s high time fathers take responsibility for their children as well.]

Vuyani Jacobs: When I saw this happening, honestly I had the same feeling. I just told myself there, I want to be there, I want to take her to clinic, I want to feed her the medicine, I want to give her food because I want her to be my child. And I do challenge all fathers out there to do the same.

Jason Wessenaar: Our resident doctor, Dr Nombulelo joins us after the break, stay tuned.

Jason Wessenaar: Re boetse re a le amohela mona mo Siyayinqoba Beat It! Support Group {SeSotho} [Welcome back to the Siyayinqoba Support Group.] We also welcome Dr Nombulelo, our resident doctor. Doctor, what are the most important things caregivers can do to prevent HIV positive children from becoming sick?

Dr Nombulelo Madala: First of all I want to start with immunisation, which all children, whether HIV positive or negative need to get. So even the HIV positive child needs to go for the usual vaccinations. And let the health professional be aware that the child is HIV positive and they will know what to do but the child needs to be taken for all their basic immunisation shots. And then things like basic shelter, basic nutritious food that people can have in their own home gardens. People can just prioritise for once and stop buying the fashions and all these things, and look at what’s basically needed in the home, and basic nutrition for children and adults is one of these things. And quick access to healthcare. Those things will go a long way towards keeping our children healthy in the time before they are need ARVs, and even when the ARVs are there, because as we know they are not a cure, they’re just a control of a chronic illness.

Jason Wessenaar: What other prophylactic medications can a child get who is HIV positive besides Bactrim?

Dr Nombulelo Madala: All children under one year old living with HIV are given Bactrim prophylaxis. All those adults who have pulmonary TB, that are known to the clinics, the children should be traced, and this applies to HIV negative children, the children should be traced and all children under five years of age should get INH prophylaxis against HIV.

Anthony Fernandes: I’m not sure I get this whole thing about the immune system not maturing quick enough and why some kids get so much iller so much quicker. How does that work?

Dr Nombulelo Madala: You will find those who are called the rapid progressors that will progress rapidly within the first year and maybe even die. So those genetics have got a role, and we start there. But then, on top of that, we come to the maternal factors. Those are factors within the mother, that mean that the child is highly-infected and is most likely to be a rapid progressor. That is a mother who has got advanced disease, during pregnancy, with a low CD4 and a high viral load or during pregnancy and around the time of delivery. And a mother who either gets infected for the first time, during pregnancy, around delivery or during breastfeeding, or the mother was HIV positive but gets re-infected; remember we talked about people practicing safer sex even after they know their status, and these are some of the relevancies of that.

Vuyani Jacobs: What kind of vitamins would you recommend not just for people with HIV but mostly for children with HIV?

Dr Nombulelo Madala: It is a known fact within the health profession that vitamin supplementation is a good way of boosting the immune system; specifically the Vitamin B complex has been known to be a good immune booster. Vitamin A has been proven in studies to help to retard the progress of any acquired illness so that it doesn’t rapidly progress, becoming more severe and to avoid any severe complications of whatever the infection was.

Jason Wessenaar: What are the most common opportunistic infections that children get?

Dr Nombulelo Madala: The most common one, as mentioned in the insert, is the upper-respiratory infections, bacterial infections, things like the ear infections, throat infections, even the lower-respiratory infections, things like pneumonia, again, skin rashes and diarrhoeas.

Nomandla Yako: I’ve seen children who are deaf, others who are blind, others cannot walk at all.

Dr Nombulelo Madala: Complications from the opportunistic infections and then complications from some of the illnesses caused by the virus itself; talking about some of the neurological sequelae of the just, virus itself, direct effect of the virus, the child could actually become disabled from those. Like talking about deafness, which could have been caused by chronic infections of the ear; you talk about blindness, which could have been caused by the CMV, retinitis and other eye-infections that the child might have had, that are severe.

John Vollenhoven: In a family home where there’s stable, and in a family home where there’s not so stable, where there’s maybe arguments, does it affect the child in a certain way?

Dr Nombulelo Madala: A person’s emotional wellbeing has an impact on their immune system. So a child who’s already fighting with this disease and their immune system is somewhat compromised, being in an unstable, unloving, unhealthy home environment would further deteriorate their health and then they might cope less than another child with the same sort of level of disease, but in a more stable and more loving home environment.

Vuyani Jacobs: Which is the approximately appropriate age to tell your child?

Dr Nombulelo Madala: A child should be given information that’s appropriate to their age. For instance, maybe they’re about three, and they know there’s something called being ill. Then you can say: “No, you are not well today, and I’m going to take you to the doctor. Doctor is gonna make you better” and all those things. But as they grow older, then you’re gonna try and make them aware that they’ve got some sort of illness, and they must be careful of that, but don’t also freak the child out; make them feel like they need to live in a box. But the best way is when parents know their children intimately and they know what to say and at what time.

Jason Wessenaar: Siyabulela Dr Nombulelo {IsiXhosa} [Thank you Dr Nombulelo] and the support group. Things we should remember are children with HIV need:

1. Good nutrition every day,
2. Early treatment of infections,
3. Vitamins to boost the immune system and prevent infections,
4. A stable and supportive environment,
5. Bactrim and INH to prevent infections and
6. Access to antiretrovirals when needed.

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 Dr Nombulelo, please contact us on the numbers on your screen right now. Thanks for being with us. Ho fihlela bekeng e tlang {SeSotho} [Join us again next week] in the Siyayinqoba Support Group. Stay healthy, stay positive.

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