The pain of age in a child's bones

Bethany, aged two and a half, had been increasingly poorly for several months. She was extremely feverish at night and woke several times in pain and feeling stiff. Her joints, particularly those in her knees, jaw, shoulders and fingers, would be come swollen and hot to the touch. In the day she was listless, tearful and reluctant to eat.

The GP told us it was a virus and to try some paracetamol. We tried taking her to our friendly dentist to see if something was amiss with her new teeth, but Bethany refused to open her mouth wide enough for him to examine her. When one knee swelled to twice its normal size and she remained feverish during the day, we took her to the local children's hospital casualty department.

A blood test was taken and she was found to be anaemic, but by this time the swelling had gone down and she was not judged an emergency: we had to wait a further six weeks for a consultant appointment.

Nine months after Bethany first began to get ill, we walked into the consulting room. It took only a few minutes for the diagnosis to be made: she had juvenile chronic arthritis and was so severely ill that she had to be admitted immediately for a blood transfusion. The disease had attacked the bone marrow producing the red blood cells.

One in 1,000 children in Britain have some form of arthritic illness, but very few of these are affected in more than five joints (polyarthritis), like Beth was, and fewer still have systemic onset, as she had. This means that their soft tissue - skin, liver, spleen, heart, bone marrow - can all be seriously affected. By the time Bethany got the attention she needed, my husband and I were not only exhausted but deeply grieving for our previously lively little girl, now so listless and crippled with pain. Our younger daughter, Ruth, then only 10 months old, had also had to endure her sister's illness.

We were totally unprepared for that first week in hospital. It was like crossing a threshold to a different place where our family life was constantly scrutinised by well-meaning strangers. Within the hour a friendly admissions nurse managed to upset us.He asked us what would comfort Bethany if she woke at night; I mumbled that she might ask them to pray for her. The nurse tried unsuccessfully to hide his laughter. We had been desperately trying to care for our sick child for months without professional help; we had often prayed over her especially when the pain relief failed her at night.

That same afternoon they tried to attach the transfusion. The needle slipped and blood spilt down Beth's dress and on to the table. She had already screamed in pain when the nurses, forgetting her arthritic joints, clasped her hands tightly and tried to straighten her arms: now she became hysterical.

On the second day we took her to physiotherapy. She needed leg splints to immobilise her knees and relieve the pain. As a senior occupational therapist myself, I knew that the splints should be moulded on gently, especially on someone with arthritis: I was devastated when the two therapists pinned Bethany down, forced her legs straight and continued to shape the splints despite her screams.

It was some months before I expressed my feelings to the therapists concerned. Until then, I was haunted by what I had allowed to happen and my own sense of helplessness.

Bethany was in the children's hospital only a week, but the next six months saw three further stays at a specialist hospital 70 miles from home. The disease continued to rage; six different drugs were tried to control the more extreme symptoms. Once the

y began to work, we could gradually introduce tiny amounts of food other than milk: home-made ice lollies, containing a calorie-boosting powder, were the real favourite.

Bethany suffered most pain in the early hours of the morning when she would wake covered in sweat and completely stiff. A lengthy bath, massage and then 90 minutes of physiotherapy enabled her to be mobile by lunch time. After lunch, she would be bandaged into her splints again. She would sleep for a couple of hours, play for a short while before supper, have another bath and go to bed. A team of five other mothers from our church came in rota to share the burden with me and help with the exercises, which were always uncomfortable, sometimes excruciatingly painful and very boring. However they were worth it: two years later she has fully functional joints, and a near-normal pattern of movement and even some muscles that work.

The next year saw up to 18 different professionals visit our home. They all seemed to ask the same questions, and were nearly always unable to offer the actual help we needed. The local Crossroads Scheme was different. It was run by other mothers who loved working with children and who brought laughter and fun into the house at times when we were too tired, anxious and hurting.

Early on we decided that family life should not be dominated by the illness. We already faced many compulsory separations while Bethany and I were 70 miles away in hospital, Nigel was working and Ruth was being looked after by my parents. Even on Ruth's first birthday we were split up. Our priority was to keep the children together as much as possible, despite the restrictions of the illness and its routine.

Our decision seems to have been the right one: our girls now share a loving concern for each other instead of a bitter rivalry.

After two years of acute illness, Bethany, now five years and two months, appears to be entering a period of stability. She can play enthusiastically on the climbing frame in our garden, building up her strength herself rather than relying on physiotherapy. She has settled happily into a school for physically disabled and delicate children. She has grown in confidence, and laughter is now a greater part of our lives than tears. The children have bounced back while Nigel and I have only slowly recovered from this emotional and physical battering.

Coming out of the sickroom has its difficulties. I recently helped friends prepare a wedding lunch and felt totally inadequate yet all I was doing was chopping up tomatoes. Self-confidence and lightheartedness had slipped away without me noticing.

No one knows what course the disease will take. Doctors say that children with arthritis often suffer periods of acute illness into adult life. Meanwhile, we feel we have learnt much from our experience. Only one member of our family has juvenile chronicarthritis, but it is all of us who have lived with this terrible disease.