MOST of the children who attend the HIV clinics at Our Lady's Hospital for Sick Children in Crumlin do not know why they are there.

The stigma attached to the virus is no different for them. The parents of these children, some as old as 13, have kept the information from them and instead related a variety of reasons, including anaemia, for why they take medicine and need to attend the hospital.

Many parents are terrified of being identified by someone they know while waiting for the clinic and have asked about the possibility of using a back door exit after the appointment. Sometimes when a child has to be hospitalised, an uninfected sibling will be told that they have "gone to stay with granny for a while".

The secrecy can make matters very difficult, according to Dr Karina Butler, the consultant who treats these children. "Parents are telling us that the children are now getting boyfriends and girlfriends. To be able to undertake a proper discussion with them we need some sort of psychological input. Psychological support is crucial as they enter adolescence. It is a very difficult thing to come to terms with what is essentially a disability and being dependent on medical care and medication.

"With the older children we do try to create the atmosphere where they can ask the question. I'm quite sure a number do know but they do not want it confirmed or do not want their parents to be upset. We often have to run the clinic without our medical social worker. It is a big loss, but she is shared with other teams whose problems are just as important."

This part time social worker is assigned to deal with these and other problems related to these children. More than 80 families are in contact with the clinic. The majority of children are living in families where there are drug problems. According to Dr Butler the mother is often too busy taking care of the children and neglects her own treatment. In 40 per cent of cases it is the male partner who is using the drugs.

"If you have active drug use the family system is chaotic. It is not about who is going to the doctor, who takes their medicine or who gets fed. It is about getting drugs. The children are left to fend for themselves," says Dr Butler.

At a medical level, treatment in Ireland for children with the virus is comparable to the US, particularly since local drug companies are very cooperative, says Dr Butler. A number of the children are on combination therapy.

However the health system fails these children and their families in a number of other ways, including family and psychological support. We have just one AIDS liaison nurse, Eilish Hayes, for over 80 families. We are not just dealing with a child in isolation but with a family and often another infected sibling. Another child in the family may be uninfected but they are always affected. As they get older there is more and more `acting out' behaviour, including running away and getting into trouble. This is where we fall down."

WHAT is needed is a family treatment centre. "It makes much more sense for adults to come to the children's hospital. Adult hospitals are not child centred. However, we have no space as things are without having to treat the adults.

We really need a counselling and education room. The new treatment regimes are complicated and we need somewhere to teach parents about them. At present they have to stand in a corridor while a pharmacist explains through a hatch. They often do not like to take literature about HIV home, in case it is seen - so it would improve things greatly if we had somewhere to do all that.

We serve as a resource for the entire country, and we could do with at least two social workers."

In 1992, when Dr Butler moved back to Ireland from the US, there were 17 children infected with HIV. A few of them would have been on a regime of one AIDS drug but most were considered not to need treatment. Now there are 31 infected children attending the clinic.

Dr Butler says the treatment of paediatric AIDS has been revolutionised with the introduction of the antiretroviral therapies. "Treatment strategies advanced as theoretical concepts in the early 1990s have been proved possible, practical and more effective than anything heretofore available."

At any time about 20 per cent of the mothers of these children have died of an AIDS related illness. Often the grandparents step in to take over the role. "Hopefully that will change with the parents on the triple therapy. Two years ago we would have given some of them six months to live, and now they are looking very well."

However, Dr Butler points out that there are difficulties with the strict regime surrounding the triple therapy for children. "A toddler doesn't like to take a single drug once, never mind two or three times a day. Hassled mothers, often ill themselves, cannot coordinate complicated therapeutic schedules."

Even when these obstacles are overcome, she adds, a lack of suitable formulations can prevent younger children benefitting from recent advances.