Jeanette Meadway
The Mildmay Hospital offers very intensive support to families with HIV. They have a great deal of experience, not only in helping them take their medicines but also in helping them stay together.
In 1998, the Mildmay Hospital (originally opened for people with cholera at the turn of the century) became Europe's first HIV/AIDS palliative care unit. Since 1993 it has had a family care centre including a children's nursery.
The family care centre has two wards that can accommodate six families. We often have a mother with up to four children in any one of the rooms. Either the mother or the child can be the patient with HIV, and occasionally, a child who is HIV+ can come in with a carer. It is more common for us to have HIV positive mothers with their children, irrespective of whether the children are HIV-positive or not.
One measure of the effectiveness of combination therapy, is that we have had something of a 'baby boom' in the UK amongst HIV-positive women. Our clinic has a particular role to play, allowing the mum to be not only with the new baby, but also with her other children just a few days after delivery.
Sometimes our mothers are IVDUs or on methadone programmes. Often, if the mum and baby were not with us, they would be separated with the baby in special care and the mother going home. Mothers also have to think about taking their own anti-HIV therapy, on top of dealing with the baby's medication. This may be very new to them if they were only diagnosed in pregnancy.
When giving combination therapy to children in the nursery, it is very important that the kids feel happy and secure where they are. I know this sounds like a little thing, but it is not always easy to achieve. Children who are HIV-positive are not always readily accepted in other nurseries.
We arrange meal times with other kids to encourage children to eat. Children who usually never eat anything, can suddenly begin eating very happily in this setting. Seeing other children take their medicine is also helpful.
Staff at the Mildmay are familiar with the medicines and the importance of the regular dosing. This is something that is not true in a generic nursery. It is important to know in detail the individual drug requirements, what they are for, and how important it is to have regular doses. Another benefit is that mothers who have to give kids medication can talk to other mums about how to do this.
In terms of getting babies to take the meds we tend to always squirt it in orally using a syringe and we teach mothers how to do it at the centre. There are various techniques and afterwards the kid will usually suck on a dummy and take it in without much of a problem. Both AZT and d4T are not too bad in taste but I'm not talking about giving ritonavir. With ritonavir we do tell all mums 'NOT TO MIX IT WITH A FEED IN A BOTTLE'. I put that in capitals for people who advise mums on how to give medicines. It really does need a large amount of dilution - so it is likely the child won't complete the whole dose if they don't completely finish their bottle - and then you've no idea how much they have had.
Babies quickly get used to taking medication. If children have medication from when they are tiny then it doesn't seem to be any problem in getting them to swallow it - they take it for granted that they have their medicine. All the kids we have had in Mildmay who have taken medication for a long time are in a routine and so it is no hassle. Starting older children can be much more difficult.
Taste and formulations
Here is a brief overview of general opinions of drug formulations we have used at the Mildmay over the last year. This isn't meant to be technical or comprehensive (see the Appendix III for more detailed information) but most real responses don't get included in clinical trials.
Taste is particularly difficult to report - especially as childrens taste is different to adults. Some drugs with less information reflect the fact that we haven't used them so much.
AZT
The kids like this. (One of our nurses asked me to pass on the information that kids actually love AZT). It is a clear liquid. Newborns have it in syringe and some of them are uncertain about swallowing a syringe full of stuff, but if you put the dummy in afterwards they suck away at it.
We find different centres sending children to us have different regimens and some take it twice a day and some four times a day.
d4T
Children don't mind the taste of d4T but it is not quite as easy to take as AZT. Once it is made up it will last a month and it is not too difficult to store. Some children have this instead of AZT. If the mother is likely to be resistant to AZT, then children are routinely being given d4T instead for the first month after birth. They usually have one month however and then go onto septrin until it is certain that they are HIV-negative.
ddI
ddI comes as a pink cloudy liquid. We describe this to the kids as being like a milkshake and hope that they are convinced! It is given once or twice daily and kids don't tend to mind the taste.
In theory it should be taken on an empty stomach, but this can be a big challenge - have you ever tried to get a tiny baby between feeds to have medicine and then not cry for the next feed? You may have to compromise and do the best you can - and there has been one report that in children the food interaction is less important.
3TC
3TC comes also in a cloudy liquid. We find that the kids don't mind that one too much.
abacavir
Abacavir is now a liquid and you can also crush tablets. You've probably heard that there are some very severe warnings about abacavir for adults and hypersensitivity. Unfortunately some of the symptoms can imitate the ordinary everyday illnesses of childhood.
nelfinavir
Nelfinavir comes as granules, which you are supposed to make up as a liquid. On the whole we find that nobody takes it. None of our children like it at all and we find that they are happier with tablets crushed to a fine powder with a pestle and mortar.
Most of our mums come into us with the granules and after about a day and a half we phone up their treatment centre to get the tablets instead. Nelfinavir does not taste too bad but it is an absolutely lurid blue and it is difficult to disguise the colour in anything.
ritonavir
Ritonavir really is foul and children are often able to get it in through a gastrostomy-tube. I would not like to have to give my child ritonavir.
Fatty foods disguise the taste a little, but sweet ones don't seem to at all - so sugary things don't seem to have the slightest effect. Some people think peanut butter or chocolate may help.
Some kids will start co-operating by having it in a syringe and putting it themselves into their mouth and I think that is the only hope for bigger children. But for the very small ones who don't understand why they are having medicine I would not fancy trying to give ritonavir liquid.
nevirapine
Nevirapine comes as a cloudy suspension. The tablets can also be crushed as well and we have found that either of these are acceptable to most of the kids. Obviously there is a risk of rash with nevirapine.
efavirenz
Efavirenz is only recommended for children older than three years. I have problems with our adults starting efavarinz in that they have really ghastly dreams and some have extreme agitation, but this has been less of a problem with children, although it may be that children experience these symptoms but cannot describe them.
Dr Jeannette Meadway is Medical Director of Mildmay Hospital in London, the leading UK specialist HIV palliative care unit, caring for men, women and children with HIV. She is the consultant for the family care unit, including a children's nursery and inpatient unit for mothers with their children. A specialist in HIV medicine and internal medicine, until 1997 she was lead clinician in infection and immunity at Newham General Hospital in East London.
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