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In this chapter, there is a range of tried and tested ideas to help you tackle some of the most common daily problems for a child with arthritis. Arthritis affects the child's joints and impacts upon most areas of daily living. There are some principles about how to protect her joints from further damage or strain, and as parents, you will need to incorporate these principle into daily life, and teach the child how to begin to look after her joints herself. An Occupational Therapist is the best person to advise you and tell you where to purchase any extra gadgets. Ask your family doctor or Paediatrician to refer you to an Occupational Therapist.
The most important things to remember are :-
Occupational therapists are healthcare professionals who can provide a systematic assessment of the young person's needs for training, equipment or assistance in order for them to carry out normal daily living activities. The assessment should include an estimation of the young person's maximal level of independence. Very simple equipment (such as grab rails near the bath or light switches on cords) and adaptations can make daily life a great deal easier while helping the young person to be as independent as possible. Try to keep the floor surface clear of obstacles like rugs and wires that can easily trip a child with arthritis.
This may involve other professionals in order to reach a situation in which the quality of life for the young person and carer are considered. Lifting a growing child is a particular task that the carer's health must be considered too. Many carers experience back pain. Get advice from a Physiotherapist or Occupational Therapist if you find you need to lift the child a lot at home.
A common problem facing children with arthritis, especially those who wear night-time splints, is getting to sleep and staying asleep. It can help to establish a firm bedtime routine to get the reluctant child to bed. In busy homes, and where medicines and splints upset the child, bedtimes can become stressful for everybody. Try to keep to the routine you choose whoever puts the child to bed.
The children may become more aware of their symptoms during the evening and often have fevers at night. Many families have found that using crepe bandages over splints at night is more comfortable for children. If the joints swell overnight, the bandage allows for more comfortably than some other straps. Most children are more comfortable using cotton pyjamas/night clothes and bedding. Using leg splints at night does help the child to walk more quickly in the morning. Try using a manufactured (natural fibre) 'sheepskin' bottom sheet which may be more comfortable for your child. These can be purchased or alternatively borrowed from community nursing services so ask at your doctors surgery about who to telephone.
Most areas have a Daily Living Centre where you can get impartial information, advice and carers and children have an opportunity to test out different equipment for independent living. The centre does not sell the equipment but they will tell you the cost and suppliers details. The Red Cross run their medical equipment loan from the same site. You can also arrange for an appointment with an Occupational Therapist.
Look in your telephone directory for the address and telephone contact for your nearest Daily Living centre.
Riding bicycles: This is an excellent way for the young child with arthritis to keep mobile and fit. This is because the child is keeping their heart and lungs fit while exercising their joints but without bearing their body's weight. If you are able to create a '8' shaped track on some level paving outside the home this helps give the child a safe place to keep peddling without having to stop. Some children can enjoy peddling their bikes even when they cannot walk far.
Initially a sturdy three-wheeler provides children with the chance to race their friends. Later, bicycles with strong stabilisers prove useful, but remember to use safety helmets. Newer designs of bicycle, like a child's bike hitched onto an adult's cycle, or adapted tandems are now used by families. Look in your telephone directory for a bicycle shop for advice and ask the Physiotherapist.
Mobility issues: Children with arthritis usually need extra help to get about. As soon as an ordinary child's buggy becomes too small, contact an Occupational Therapist for help and advice. A Physiotherapist may also be very helpful. For a short time, or for several years, the child may need to use elbow crutches, or a folding buddy for a larger child, or a small wheelchair for an older child. Some school-aged children have a new lease of life once they are issued with an electric wheelchair. You can telephone the Occupational Therapist for advice, or ask the GP, or another health or social care professional to refer the child to the nearest mobility assessment centre. You may have to wait many weeks before getting an appointment. Once the child has been assessed, the equipment can arrive within days. It is not uncommon however, for equipment, particularly large or very complex equipment or adaptations to take many months to arrive.
"We've got Hannah's hoist in the sitting room along with three other pieces of equipment, there's some more in my husband's little office. We've also got two lots of pushchairs and a wheelchair."
A full assessment should include all these factors :-
Parents need to:-
Make sure the above factors are considered. It's no good if the wheelchair fits the person but seriously damages the chair-pushers back.
Check what the maintenance arrangements are for any equipment, and what the procedure is if the equipment gets broken. Who do you contact if this happens and what is their telephone number.
Wheelchair vouchers: In some areas and if the young person is eligible, it is possible to ask for a quota of mobility vouchers (approximately the price of a standard wheelchair) in lieu of the equipment itself. The vouchers can be exchanged with most commercial wheelchair manufactures, and can contribute towards the cost of more expensive models of wheelchair.
In order to maintain the quality of life for the young person in your care, you must take care of yourself. Asking for help can be very difficult f or carers who have always had to cope, but alongside the young person's needs are those of the carer. In our experience, if the young person is to be helped tomorrow, then the carer must be helped today. The quality of life for the young person is also going to be better if the carer is looked after too.
The Carers (Recognition & Services) Act 1995 and the Carers and Disabled Children Act 2000 give you the right to ask for an assessment of your needs, for some services to be organised to take care of the carer, and to request Direct Payments.
This is still a new approach and you will have to be persistent in asking for your 'carer's assessment'. Contact the local health and social care team (from the telephone directory) and request a carers' assessment.