Diagnosis at last - one family's story

(published in Arthritis Today, Spring 1995, Issue no. 91)

Struggling to get medical attention

Often her neck hurt and she was reluctant to chew, but all these symptoms fluctuated and the G.P.'s response was "It's a virus, go and buy her some more paracetamol." She also said the symptoms were nothing to worry about and I was not to be an over-anxious mother. We even tried taking her to our friendly dentist to see if something was amiss with her teeth. Bethany screamed when she had to open her mouth wide enough for the oral examination. When one knee swelled to twice its normal size and she remained feverish during the day we took her to the Children's Hospital casualty department. A blood test was taken which showed she was very anaemic but no treatment was prescribed; instead we were given an appointment to see the consultant in six weeks time.

Seven minutes to reach a diagnosis

At midday, we walked into the consulting room: it took 7 minutes for the consultant to examine Bethany and reach a firm diagnosis. She had systemic onset polyarticular Juvenile Idiopathic Arthritis (at the time called Juvenile Idiopathic Arthritis), but she was so critically ill that we were asked to take her immediately to the admission ward for a blood transfusion and an indefinite stay in the hospital.

Although 1 in 1,000 children in Britain have some form of arthritis disease, very few of those are affected in more than five joints (polyarticular), and fewer still, about 1 in 10,000 have the systemic form which means that their soft tissue (skin, liver, spleen, heart etc) can be seriously affected by the disease. Beth was one of the few.

When at last she received decisive medical attention my husband and I were utterly exhausted and relieved but deeply grieved for our lively little girl who was visibly crippled by pain. Our younger daughter Ruth, then only ten months old, had also endured the last four months of Beth's mysterious illness, and at what cost?

Public scrutiny of private family life

Nigel and I were very unprepared for this dramatic turn of events and I worried that Bethany had no warning about her impending stay in hospital. The walk to the ward was like crossing a threshold to different life where all our family life would be scrutinised, assessed, and governed by unwelcome strangers.

Within the hour, there was an example of this unwanted intrusion. A friendly admissions nurse had asked a hundred and one questions about Bethany, and wrote my answers down for all to peruse. Ending the interview, he asked that if she woke at night what would comfort her. I mumbled that she may ask them to pray for her. The nurse unsuccessfully tried to hide his laughter. We had been desperately trying to care for our baby and our very sick child for months, without being believed or relieved by any professional. We often prayed over her especially when the pain relief failed at night, and this private fact made the young nurse laugh.

Mishaps and more lost sleep

The same afternoon in hospital Bethany had more blood tests. A few hours later, the whole process was repeated but as they attempted to attach the transfusion, the needle slipped and blood split down over Beth's dress and onto the table. Previously Bethany had been crying when the staff clasped her hand tightly for the needle, now she cried hysterically. These days I would not allow an unnecessary arm lock of an child with arthritis, but then I was too shocked, too upset and too weary to intervene. I sat with Beth asleep on my lap while the transfusion process was completed overnight. Another night without proper sleep.

The next six months saw three further stays at a paediatric rheumatology ward seventy miles from home. The disease continued to progress and only a regime of six different drugs seemed to control the fluctuations at last.

The exercises

Bethany was always in most pain in the early hours of the morning when she would wake up covered in sweat and completely stiff. For nearly eighteen months, we had woken up to the sound of her crying in pain. We would give her a lengthy bath and massage, and then one and a half hours of physiotherapy which enabled her to be mobile by lunch time. After lunch (which meant strongly encouraging a few mouthfuls of food and medicine down) she had to be bandaged into her arm and leg splints again as she took a nap. A team of five friends came on a rota to help with the physiotherapy and they helped to stimulate Bethany, entertain Ruth and support me. I am very grateful to them for their help.

The exercises involved actively and passively moving each and every joint. They were uncomfortable, sometimes excruciatingly painful and very boring. However, the fruit of our combined efforts was that when the disease receded two years later, Bethany still had fully functional joints and a nearly normal pattern of movement. When her pain decreased, she began to play energetically again, thus improving her own fitness. Keep going with exercises, but perhaps doing them intensively and correctly in bursts of weeks, is more effective than doing them half-heartedly each day for ever.

Family first

New friendships began with families in the same position as us, and other friendships deepened. Kind friends provided us with hot meals sometimes at weekends, and we got to know our neighbours who offered to help with shopping and ironing. Both sets of grandparents have been great. Sadly though, some friends and family members withdrew, seeming to be unable to cope with the consequences of Beth's illness.

Early on, we decided that our target was to survive as a healthy family unit. This meant that the family's interests came before Bethany's illness, although our whole lives were changed by the illness itself. We still had many enforced separations with Beth and I seventy miles away in hospital and Nigel, Ruth and my mother at home. We were even split up on Ruth's first birthday.

We decided that whenever possible, the children would be together at home. They had a shared childhood and it needed to be happy, secure and family rather than illness orientated. We felt that Bethany needed to learn the give-and-take of having a sister around while Ruth had to learn to flourish alongside her sister and not in the shadow of the illness. We thought that separating the girls in the short term would make it more difficult for them to share later. For example, friends often offered to 'take the baby for a while' so we asked them to help in alternative ways. Although our decisions seemed emotionally costly at the time, we feel the decision was right because now our girls are flexible and have a loving concern for each other instead of a bitter rivalry or inequality that can arise when one child is ill for a long time.

Coming out of the sickroom

After two years of unstable acute illness, Bethany came into a time of 'quiet' disease. We tried ordinary nurseries but she settled happily into the reception class with four other children, in the local school for 'physically disabled and delicate children' She has flourished and grown in confidence, so laughter is now a greater part of our lives. In fact the children bounced back, while Nigel and I took longer slowly recover from the emotional and physical battering.

'Coming out of the sickroom' brought surprises. I helped friends prepare a wedding lunch. I was amazed to realise just how unsure, inadequate and indecisive I felt in public. I was only chopping up tomatoes after all! Self-confidence and light heartedness had slipped out of my character without me noticing. It was difficult too for Bethany in big rooms, or amongst crowds of fast moving children. Ruth has adjustments to make as well. For the first time, her big sister was a physical match for her, and now playing with Beth was very tiring. The climbing frame in the garden, a gift that arrived a month before her diagnosis, was at last used by both girls. For two summers I had felt the climbing frame stood as a reminder of what Beth could not do, but this year it showed to good effect what she could do.

Conclusion

We still had a long way to go but the progress was heartening. No-one knew what course the disease would take in the future. The medical expectation for children like Beth was for rumbling acute disease into adult life. We reflected that we had learnt a great deal, and that perhaps we were more rounded people and could understand more about other people, because of all we have experienced. We were mindful that we had two little people in our home who both have special needs because they are young children. Only one of them had juvenile arthritis, yet this terrible disease had affected every member of the family.

by Carrie Britton

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