My child has arthritis
2/9/11
15:26
Page 1
My child has
arthritis
a practical guide for parents
My child has arthritis
2/9/11
15:27
Page 1
CONTENTS
02
Introduction
03
Arthritis in children
and young people
05
Emotional impact of
arthritis on the whole
family
09
Practical impact of
your child’s arthritis
13
Working with teachers
15
Medical impact of your
child’s arthritis
19
Working with
health and care
professionals
23
Helping your child
manage their arthritis
27
Independence into
adulthood
32
Sources of further help
and information
1
My child has arthritis
2/9/11
15:27
Page 2
Introduction
This booklet is aimed at parents who have a son or
daughter with juvenile idiopathic arthritis (JIA). It
outlines some of the main practical and emotional
challenges involved in parenting a child of any age
who has any form of JIA.
The following pages include:
■ what to expect when you have a child with JIA
■ personal stories from families affected by JIA
■ practical tips to help you through the experience
■ details of where to access further information
and support.
We hope you will find this booklet useful in helping to
manage your son or daughter’s arthritis, while living
as normal a life as possible.
‘
My advice is, don’t panic, don’t wrap
your child in cotton wool and try to
live as normal a life as possible.
’
Alan, whose 18-year-old son has systemic JIA.
Acknowledgements
The content of this booklet was proposed and
checked by parents who have a son or daughter with
JIA, as well as expert advisers. We would like to thank
everyone involved for their help.
The personal views expressed in the booklet do not
necessarily reflect the views of Arthritis Care.
Note on terminology
For detailed information on JIA and its treatment see
‘Sources of further help and information’ on page 32.
Arthritis Care has leaflets on three of the different
types of JIA.
2
Terminology can vary but, throughout this booklet, the
terms ‘JIA’ and ‘arthritis’ are used to refer to all forms
of juvenile idiopathic arthritis. Several other terms are
explained in the glossary on page 34.
My child has arthritis
2/9/11
15:27
Page 3
Arthritis in children and young people
The effects of JIA
JIA affects every child or young person in a different
way. As a fluctuating condition, its effects can vary
from day to day and from week to week.
While most children and young people with JIA
experience problems and pain in specific joints,
others feel generally unwell. After getting the right
balance of medication, some people with JIA go into
remission (become symptom-free) for months or
even years. Others may have occasional flare-ups
(more severe symptoms) because of changes in their
general health, infection or for no apparent reason.
© Jason Stitt - Fotolia.com
As well as physical symptoms, JIA often causes social
and emotional challenges for children and young
people. For example, they may find it hard to join in
with all their friends’ activities, may struggle to
understand what is happening to their body or may
hate to feel different to their peers.
3
My child has arthritis
2/9/11
15:27
Page 4
‘
With better drugs and a greater
number of specialist centres across the
UK, treatment of JIA has
improved dramatically in the last
20 years, and keeps improving.
’
© Bronwyn Photo - Fotolia.com
Dr Janet McDonagh, expert in child and adolescent
arthritis.
Key facts about JIA
■ Your family is not alone – around 12,000
children and young people in the UK have
some form of JIA.
■ JIA is not the same as adult arthritis. At least a
third of cases of JIA continue into adulthood.
■ The cause of JIA has not been clearly identified
but it is thought to occur as a result of genetic
and environmental factors. It is rare for more
than one family member to be affected.
■ Unfortunately JIA can’t be cured, but it can be
managed through effective treatment and
healthy living. As parents, you can make a big
difference to your daughter or son’s JIA.
■ As children and young people are still growing
and developing, it is important to minimise the
effect of JIA on their physical, emotional and
social development.
■ Medical understanding and treatment of JIA is
getting better all the time.
CASE STUDY – THE HYDES
Anita and Mike have four children. The youngest, 8-year-old Emma, has atypical systemic JIA.
‘ A big area of stress for our family is ignorance among other people. Systemic JIA has very general
symptoms – it’s all very changeable. Emma has had painful joints and stiffness, but she gets equal
amounts of pain in her muscles and places like between her ribs.
When Emma was first diagnosed we went through a grieving process. Our two boys didn’t seem anxious
about it, but they hated it when the nurses came to take Emma’s blood.
The steroids have dampened everything down but they affect her moods and weight. I’m looking for a
primary school uniform in a senior size. The main thing is, the steroids are keeping her well – previously,
she felt so tired.
Emma didn’t want to take anything. She wouldn’t drink anything except water she’d got herself because
she was worried I would disguise her medicine.
Meeting other families with JIA is really helpful. Another dad suggested trying a Starburst sweet each time
she took medicine, noting the colour of the Startburst and giving it a mark out of 10 for hiding the taste.
By the end of the packet, she knew which worked the best. She’s been much more compliant since then.’
4
My child has arthritis
2/9/11
15:27
Page 5
© Kablonk Micro - Fotolia.com
Emotional impact of arthritis on the
whole family
A diagnosis of JIA
Having a child diagnosed with JIA is a life-changing
experience for the whole family. It takes everyone
time to adjust, both emotionally and practically.
In most cases, a child or young person is diagnosed
with JIA after several months of symptoms, medical
appointments and tests. This can make getting a
diagnosis seem like the end of an uncertain process,
when in some ways it is just the beginning. If you
have more than one child diagnosed with JIA, your
experience is extremely rare. There are, however,
other parents in your situation who will understand
what you are going through and can offer support.
News of a JIA diagnosis will affect everyone
differently. It is common for parents to experience a
mixture of emotions, including relief at knowing what
the problem is, disbelief that their child has a
significant illness, grief, denial, anger and crushed
hopes. For many parents, these emotions can
continue on and off for years. Some people find that
the emotional impact of JIA is just as challenging as
its physical effects.
The good news is that a diagnosis of JIA is the first
step towards effective treatment. As parents, you can
do a lot to help your child manage their arthritis and
their treatment so they can live as full a life as
possible.
Despite the difficulties of having a son or daughter
with JIA, some families find that the experience
makes them closer, and appreciate what they have.
Parents and children affected by JIA develop new
knowledge and skills, such as self-awareness and
assertiveness, which can help them in other areas
of life.
5
My child has arthritis
‘
2/9/11
15:27
Page 6
Kids pick up on parents’ thoughts and
feelings. If you think: “Oh my God it’s
the end of the world”, they’ll think the
same.
’
Alan, whose 18-year-old son has systemic JIA.
Common emotional challenges
Living with JIA can trigger a whole range of emotions,
including those listed below. There is no ‘right’ or
‘normal’ way to react. However you and your family
members feel, you are not alone.
A child or young person with JIA may:
■ be frustrated or angry
■ want to be normal
■ feel isolated from friends, especially if they
cannot participate in activities
■ be stoic, and seem to handle the situation
better than you
■ become withdrawn or clingy, because of pain or
a lack of confidence
■ regress, by acting more childish, babyish or
naughty than before
■ experience strong and sudden mood swings
■ be embarrassed by signs of their JIA –
for example, apparent clumsiness or a limp
■ carry on pretty much as before, bar the
occasional bad day.
Parents of a child or young person with JIA may:
■ be stressed by the uncertainty of JIA and its
effects
■ feel guilty and wonder if they could have done
anything differently to improve their child’s
symptoms
■ feel isolated and alone
■ be angry and question why their daughter or son
has JIA
■ feel helpless
■ be emotionally drained
■ experience relationship difficulties, especially if
each parent has a very different caring role.
Siblings of a child or young person with JIA may:
■ worry that they will ‘catch’ JIA
■ be frightened that their sibling with JIA may die
(death from JIA is very rare)
■ be jealous of any extra attention that the child
with JIA receives
■ be confused by changes in family routine, or
their sibling’s health or behaviour
■ be very protective of their sibling with JIA
■ regress, by acting more childish, babyish or
naughty than before
■ carry on pretty much as before, bar the
occasional upset.
Managing your family’s emotions
Each member of your family may react to the realities
of JIA in different ways and at different times. It is
important that adults and children alike feel able to
discuss their feelings and concerns with someone,
and to be listened to. Sometimes it’s easier to talk
about emotions one-on-one, when you’re doing
something together. Younger children can express
emotions through drawing or making music. Older
family members may benefit from airing their
emotions in a diary.
© Margot Petrowski - Fotolia.com
JIA is a long-term condition, so you need to pace
yourselves emotionally and physically. It takes time to
come to terms with having JIA or a son or daughter
with JIA. Sometimes, you may have a delayed
reaction to the shock of a diagnosis or the relief of a
period of remission. Periods of change, such as trying
different medication for JIA, may be particularly
emotional times.
Everyone needs time to themselves, particularly if
your family is dealing with a challenging medical
6
My child has arthritis
2/9/11
15:27
Page 7
condition. Encourage each family member
to keep up outside interests to lift spirits
and to ensure that JIA doesn’t dominate
your lives. Having hobbies and seeing
friends will help a child or young person to build their
confidence and self-esteem. Parents often put
themselves last, but taking time out will help you to
keep things in perspective and build up your
resilience to cope with the difficult days.
Getting informal support from friends and family
makes a big difference. They may be able to offer a
listening ear, send a supportive message or provide
practical help by babysitting or accompanying you to
appointments. When people say they would like to
help, tell them what you need – whether it’s a hug or
a lasagne.
Families affected by JIA often feel that some friends
and family members don’t really understand JIA or its
impact, which may mean they are less supportive
than you might hope, or make unhelpful comments.
© Cheryl Casey - Fotolia.com
You may find chatting with others in a similar
situation to be a source of great help and
support. For information on social weekends,
parents’ groups and online forums run by Arthritis
Care and other organisations, see page 33. You
can also call The Source – Arthritis Care’s free
helpline for young people and their families – on
0808 808 2000 or email:
[email protected] (10am-4pm
weekdays).
If negative emotions become overwhelming or start
to interfere with daily life for any member of your
family, seek help from a mental health professional,
such as a counsellor, psychologist or child
psychologist. Your GP should be able to refer you to
someone suitable on the NHS.
‘
Kirstie kept crying all the time. She
was getting teased because she
couldn’t do things. She saw a child
psychiatrist last year and they gave
her lots of advice. Kirstie’s a lot more
confident and can cope with things
now.
’
Sharon, whose 10-year-old daughter has oligoarticular
JIA.
7
My child has arthritis
2/9/11
15:27
Page 8
Five top tips for managing your emotions
1) Remember that there are no ‘right’ or ‘wrong’
reactions.
2) Discuss your feelings and listen to each other.
3) Give yourselves time to adjust.
4) Take time out.
5) Ask others for support.
Be positive
Parenting a child or young person with JIA is bound to
get you down sometimes. But being positive can help
you to keep going and can reduce your daughter or
son’s anxieties. It is worth noting that many children
will have little or no active disease as adults.
Remember children do appreciate your support, even
if they don’t always show it.
8
Five top tips for keeping positive
1) Be well-informed – learning about JIA and how it
may affect your son or daughter will help you to
feel more prepared and in control.
2) Focus on what you can change – you can’t cure
your child’s JIA but you can lessen its impact by
managing their medication and helping them to
remain active.
3) Make goals and recognise progress towards
them – perhaps taking your daughter or son
swimming once a week, having an evening out
with your partner once a month or finding the
best shaped cushion to help your child to sit
comfortably.
4) Enjoy the good days – there will be some.
5) Make time for fun and friendships – on your own
and as a family.
My child has arthritis
2/9/11
15:27
Page 9
© Vibe Images - Fotolia.com
Practical impact of your child’s
arthritis
Changing family life
One of the trickiest aspects of JIA is that it is
unpredictable. Every person’s experience is different
and will change over time.
As a family, you may have to plan ahead more but
sometimes you will have to cancel plans at the last
minute if your son or daughter with JIA has a bad
day. You may need to make alterations to your home,
such as fitting grab rails so your child can be as
independent as possible, or you may need to find
time in family life for regular clinic appointments.
Whatever your daughter or son’s form of JIA, doctors
and other parents all advise trying to keep family life
as normal a life as possible. Letting JIA take over
family life will make you all miserable, so try to keep
up your family’s interests, activities and friendships.
Parents also advise treating a child or young person
with JIA as normally as possible. They will need extra
support when their symptoms are bad, but they also
need to be told off and to help around the house like
their siblings and peers. Chores such as washing up
in warm water may even help ease stiffness in hands
and wrists. It is tempting to indulge a child or young
person who is in pain, but they need to have a
routine and go to bed on time just like their siblings.
Some parents talk about needing to give their son or
daughter with JIA ‘tough love’.
Each parent of a child or young person with JIA needs
to work together to share the extra responsibilities of
managing the condition, whether they are still
together or separated. As far as possible, it is a good
idea for both parents to attend appointments and be
involved with managing medication, physiotherapy
exercises and caring for their son or daughter.
Otherwise, one parent may feel exhausted and the
other one left out.
If your partner is unable to attend an appointment,
try to update them on test results or new information
as soon as possible. If you’re feeling left out of, or
overburdened by, caring for your child tell your
partner.
9
My child has arthritis
2/9/11
15:27
Page 10
Other families affected by JIA can offer lots of insight
into what works for them (see page 32 for details of
Arthritis Care’s online forums and social and
information events for young people and parents).
Occupational therapists are a great source of advice
on daily living including home life, leisure, school and
careers as well as aids and equipment that can
assist families affected by JIA. If your daughter or son
doesn’t have an occupational therapist, speak to
your GP or rheumatology team.
treatment and support
■ ensure your child takes their medication, does
their physiotherapy exercises and attends
appointments
■ help your child to understand JIA and manage
their own health, so they can gradually take on
more responsibility for decisions about their
treatment and lifestyle as they grow up.
Multiple roles for parents
There is a lot to take on board when your son or
daughter is diagnosed with JIA. To minimise the
impact of JIA on their health there are three main
things you need to find out about.
Parenting becomes more complex when you have
a son or daughter with JIA. Parents need to work
together to fulfil their extra responsibilities, and single
parents will need a good support network to fall
back on.
JIA, and your child’s specific condition – so you can
make informed decisions about treatment and
support (see page 32 for sources of accurate
information on JIA).
You may need to:
■ give your child with JIA and their siblings more
reassurance, praise and cuddles – no matter
how old they are
■ act as a carer to a greater extent than before,
perhaps by helping your child to get to the toilet,
get washed or dressed, or by giving them lifts to
school rather than getting the bus
■ work with health, care and education professionals to ensure your child gets the right
Your child’s healthcare team – who they are, what
their role is and who can help with specific
challenges you have (see Working with health and
care professionals on page 19).
What works for your child – getting the right
medication, exercise routine and working out what
eases their discomfort takes perseverance, but is
worth the effort (see page 23 for some ideas).
CASE STUDY – THE HARRISONS
Kirsty and Darren have three children. The youngest, 2-year-old Aimee, was recently diagnosed with
JIA.
‘ The doctor couldn’t see any swelling. I had to say: “She’s not walking in the morning and she won’t climb.”
It makes me sad when she’s doing an activity and I see her fingers are swollen, and I know she’s in pain.
But play is very important to her. She doesn’t moan as much as an adult would.
Our two older boys are very caring but they get fed up with it. Aimee gets more time with me, and if she
loses weight she gets to eat ice cream.
Aimee has just started a playgroup one morning a week. She’s not like the other children – she sits back
and watches quite a lot. The playgroup was a bit dubious about taking her at first. They wanted me to stay
for a few sessions, but it’s going well.
Darren and I are having some conflict about medication. He didn’t want her to have anything, but I feel she
has to because her arthritis could progress and cause damage. We have to talk about it a lot. We’re still
working it out.’
10
My child has arthritis
2/9/11
15:27
Page 11
‘Disabled’
Most children and young people with JIA don’t
consider themselves to be ‘disabled’, but they may
meet the legal definition of disability. Under the 2010
Equality Act, which applies in England, Scotland and
Wales, disability is ‘a mental or physical impairment
that has a substantial and long-term adverse effect
on the person’s ability to carry out normal day-to-day
activities’. In Northern Ireland, equalities legislation is
different (the Disability Discrimination Act applies) but
the overall definition is similar.
If your child’s situation meets the legal definition of
disability, you and they could be eligible for additional
benefits, support, grants, discounts and legal rights in
education, at work, and as transport users and
consumers (many benefits are paid direct to a young
person from the age of 16). Discuss the issue with
doctors – you may need a letter from them stating
that your son or daughter’s needs are different from
those of their peers.
You may not want to press the ‘disability’ button but
it can make a big difference, practically and
financially. Just because your child’s health means
that your car has a Blue Badge or you receive a
specific benefit, it doesn’t mean you or they will think
any differently about themselves.
See page 33 for a list of sources of information
about disability rights, benefits and your rights as a
carer for a ‘disabled’ child or young person.
Time off work
‘
My husband tries to get to as many
appointments as possible. His
employer has been very supportive
about any time off he’s needed. I have
a couple of house cleaning jobs where
I can take Emma if she’s off school.
Anita, whose 8-year-old daughter has atypical
systemic JIA.
’
If you work, you may need to take time off for your
daughter or son’s appointments or when they are
unwell. Some of this time may be unpaid. Juggling
work and JIA can be a great source of stress, but try
not to make any hasty decisions about giving up work
or changing your job. Your child’s JIA may settle once
their treatment is in place, or even go into remission.
As well as providing financial security, work can be a
useful source of support and a distraction from
challenges at home.
© Lisa F. Young - Fotolia.com
Explain your situation to your manager and/or human
resources team. It may be useful to take in a doctor’s
letter that confirms your child’s diagnosis. Explain
that you want to carry on working, but that you now
have additional demands on your time. Ask about
your employer’s policies on parental leave,
emergency leave or flexible working, such as varying
your hours or working from home sometimes.
Before getting into detailed discussions with your
employer, get advice about your rights from a Citizens
Advice Bureau or your union. The charity Contact a
Family also has useful information on its website. All
parents have rights at work, and parents of a
11
My child has arthritis
2/9/11
15:27
Page 12
disabled child have additional rights. Even if you
don’t consider your son or daughter to be disabled it
is worth checking whether they meet the legal
definition of disability. See ‘Sources of further help
and information’ on page 32.
Almost all children and young people with JIA
manage well in mainstream education. However,
they may need time off for medical tests and
appointments, or because of fatigue and flare-ups.
Education is vital for developing a child or young
person’s confidence and self-esteem, so it is worth
doing what you can to minimise their time off (see
‘Working with teachers’ on page 13).
Be organised
One of the best ways to keep on top of the practical challenges of JIA is to be organised.
■ Keep copies of all correspondence to and from doctors, teachers, benefits agencies etc, for future
reference.
■ Make notes of important telephone calls with medical and educational staff, and request written
confirmation of key decisions.
■ Keep an up-to-date record of your child’s medication and doses, to help with repeat prescriptions and so
that others can supervise medication if necessary.
■ Use a weekly medicine dispenser to avoid having to get tablets ready every day.
■ Try keeping a diary of your child’s symptoms for a few weeks, noting any changes in moods, energy levels
and any side effects from medication. This will help you to track how effective treatment is, and help
them to pace themselves.
■ Prepare notes and questions before appointments. Some hospital websites have forms you can print off,
complete and take to appointments.
■ Prepare for flare-ups – keep a stock of things that comfort your child, and fill the freezer so you have
meals ready for bad days. If you think your child may need additional aids or support in future, set the
wheels in motion.
■ Plan ahead for outings and holidays – pack pain relief and single use heat/cold packs, encourage your
child to rest beforehand, and arrange any special requirements (for example, explain to a venue that your
child cannot queue for long, or request an airport wheelchair to avoid them being jostled).
12
© WavebreakMediaMicro - Fotolia.com
Time off nursery, school or college
My child has arthritis
2/9/11
15:27
Page 13
© Monkey Business - Fotolia.com
Working with teachers
Who’s who
■ School or college nurse – a specialist nurse
employed by your local health authority/trust or
your child’s educational institution.
■ Special educational needs co-ordinator
(SENCO) – a teacher in charge of co-ordinating
additional support for individual children who
require it, including children with JIA.
■ Family support worker – a school or local
authority/council employee who works with
families to resolve practical problems. Sometimes accessed by referral from a social worker.
■ Education welfare officer – an official who
works with schools and families to improve
school attendance.
Communication is key
Getting teachers to understand your daughter or
son’s condition is the first step towards enabling your
child to participate as fully as possible in educational
activities. Give teachers copies of doctors’ letters that
outline your child’s diagnosis and treatment (doctors
require your permission before contacting a nursery
or school directly). When your son or daughter is
older or wants more assurance of confidentiality, you
could ask their doctor to write a specific letter to their
school or college, focusing on information relevant to
their educational needs.
Be clear about what teachers can expect from your
child on good and bad days. For example, fatigue can
be overwhelming but invisible. Children and young
people often hide their symptoms to appear ‘normal’
at school, so tell teachers about the signs that show
your child is in discomfort.
Most teachers are sympathetic when they know what
the problem is, but it can take a while to arrange
support, such as additional time for exams, or to
resolve problems such as bullying. Be persistent.
Having regular chats is a useful way of keeping
teachers up to date with your child’s health.
Discuss with your son or daughter whether they want
to explain their JIA to their classmates, or want the
teacher to. Their classmates don’t have to know they
have JIA, but it may help to demystify the condition
and prevent teasing. Some children and young people
find that giving a class presentation is a good way to
do this. Alternatively, a general lesson about illnesses
in childhood rather than specifically about JIA may
work well, particularly in secondary school. Most children and young people tell several close friends about
their JIA, even if they don’t want everyone to know.
Ensure that your child’s educational institution takes
steps to involve them in extracurricular activities,
such as trips and performances, as well as academic
work as these are also important in developing
confidence and skills.
13
My child has arthritis
2/9/11
15:27
Page 14
If teachers seem unhelpful, consider giving them information on JIA (see page 32 for suggested resources).
If problems persist, discuss this with the school SENCO, headteacher or the local education authority.
Managing absences
‘
School has been great with Rhys. He’s
not had to have much time off. His
appointments are every six months
now, and the community nurse does
his blood tests before school.
’
Emma, whose 7-year-old son has oligoarticular JIA.
Educational institutions are increasingly strict about
absences. Try to schedule tests and appointments to
limit your son or daughter’s time off, and ensure they
get plenty of rest at home. Tell teachers if alternative
arrangements would help to increase your child’s
attendance (see the box for ideas). If your child
needs time off because of ill health, tell their school
or college what the problem is and send copies of
doctors’ notes.
During periods of absence, keep in touch with teachers and classmates through visits, calls or emails.
Your child may be able to study at home or attend key
events such as performances and sports day. This
should help them to feel less isolated, and will ease
the return to class when they are well enough.
If your daughter or son has genuine reasons for
missing school or college (such as unavoidable
appointments or severe flare-ups) any meeting with
an education welfare officer should be a formality.
Even so, it is useful to demonstrate that you have
done what you can to maximise your child’s
attendance and to show officials a record of
appointments with healthcare professionals.
Special educational needs
JIA is considered a special educational need because
children and young people with JIA may need special
arrangements to get the most out of their education.
Getting a statement of special educational needs (or
education, health and social care plan) is often the
key to getting the right support for your son or daughter at school, nursery or college. Talk to the SENCO
about how to put this in place for your child. This
process can take months so it is advisable to get
started soon after your child’s diagnosis, even if their
needs don’t seem great. Having a statement or plan
is a good way to ensure that your daughter or son receives ongoing support when they change schools, or
progress to higher education. Note that the government is reviewing statementing and the law may
change by 2014. The box below gives some examples
of how to tackle some common problems in school.
CHALLENGES AT SCHOOL
POSSIBLE SOLUTIONS
Difficulty sitting with legs crossed or getting up from the
floor.
Sit on a chair in circle time and assemblies.
Gets tired out during playtime, or stiffens up in cold
weather.
Enjoy quiet, indoor activities with friends at playtime.
Cannot sit in the same position for long.
Take stretch breaks in lessons or exams.
Cannot walk quickly, or being jostled causes pain.
Have lessons in the same room or close by, leave early
to get to next lesson or get a ‘lift pass’.
Struggles to get dressed and undressed.
Get extra time or help to change for PE.
Cannot carry heavy things.
Have a set of textbooks at home as well as school, or
ask a friend to carry their bag or have more than one
locker around the school.
Finds school furniture and equipment awkward or
uncomfortable.
Get an angled desk, cushion, chunky pens or a laptop,
as appropriate.
Struggles to manage a full school day.
Have a reduced timetable or extra breaks.
Cannot write quickly or for long periods.
Get additional time, or a scribe to write answers, in
coursework, tests and exams.
Moving from primary to secondary school, or from
secondary school to college or university.
Arrange pre-transfer visits to identify possible challenges.
Send written information about specific needs to new
institution before first term.
Getting appropriate careers counselling.
Give specific advice to careers counsellors on your son
or daughter’s condition.
14
My child has arthritis
2/9/11
15:27
Page 15
© Orange Line Media - Fotolia.com
Medical impact of your child’s
arthritis
Treatment for JIA
‘
Having injections or taking tablets is
quite a small sacrifice if they can help
you to walk and run. My wanting to
be able to do things overtook my fear
of medication.
’
Clare, now 23, who was diagnosed with polyarticular
JIA at 13.
regular blood tests and medical appointments to
monitor their symptoms and treatment.
JIA is usually treated through a combination of:
■ medication
■ physiotherapy
■ self-management – learning with your child how
to take control of their arthritis and not let it rule
your lives.
As a parent, you play a key role in making decisions
about the treatment your son or daughter will receive
(see ‘Working with health and care professionals’ on
page 19). Some children and young people with JIA
try several types of medication before they find one
that suits them.
Some children with JIA also need:
■ specialist orthotics (for example, insoles) or
footwear
■ aids, such as removable supports and splints
■ regular eye tests to check for inflammation
(uveitis).
When your child is relatively young, you will probably
administer much of their treatment. As they get older
you will need to help them take on more of the
responsibility for decision making about treatment.
Your daughter or son’s doctors will advise which of
these apply to your child. Surgery is relatively rare for
children and young people with JIA these days. It is
usually a last resort if other treatment doesn’t work or
if joints become extremely damaged.
Most children and young people with JIA will need
15
My child has arthritis
2/9/11
15:27
Page 16
See page 32 for sources of information on specific
forms of JIA and their treatment.
Managing medication
could choose what chair to sit in while they have an
injection, which drink to wash their medicine down
with, or which cup to drink from. Your child may be
able to choose whether to take some drugs in tablet
or liquid form. Play specialists may be able to offer
help if you have a young child who has difficulty with
medication.
Some children and young people with JIA experience
side effects from their treatment. Any side effects will
almost always be temporary and less harmful than
untreated JIA, which can cause permanent joint
damage.
Refusing to take medication
If your son or daughter refuses to take their
medication, you are far from alone. Most parents of
children and young people with JIA experience this at
some point.
‘
Before, Matthew was so scared of
needles he’d say: “Don’t you come
near me”. Buzzy is a bee-shaped sort of
mini TENS machine that we got from
America [www.buzzy4shots.com].
Buzzy is a hero. Previously we had to
almost pin Matthew down, but now
he’s much more relaxed and positive
about injections.
’
Lindsey, whose 5-year-old son has oligoarticular JIA
and uveitis.
Your son or daughter will be prescribed medication to
dampen down the JIA, as well as other medication to
manage symptoms and pain.
It is important that they take all medication as
directed by the doctor or pharmacist. For example,
some medicines must be taken at a specific time of
day to be most effective. Speak to your doctor if it is
difficult for you to keep to the instructions – there
may be alternative options.
Taking medication can be tedious or unpleasant for
people of any age. Try to give your child a degree of
control over the process. For example, a young child
16
The first step is working out why. Here are some
questions to consider.
■ Are they frightened of needles?
■ Does the medication make them feel bad/sick?
■ Do they pick up on your anxiety about the
issue?
■ Do they want extra attention from you?
■ Do they hate having to take medication in front
of others?
■ Is it that they do not want to be different from
other children?
■ Is this their way of asserting control over the
situation?
■ Do they understand what the medication is for
and what will happen if they don’t take it?
‘
When we’re giving medicine, we make
up a song or rhyme to make it a bit
jolly. When she used to go for steroid
injections we bought her a little treat
for being so brave.
’
Sharon, whose 10-year-old daughter has oligoarticular
JIA.
Some medication can be disguised in food or drink,
such as mashed potato or hot chocolate. That’s fine
for young children or to disguise a nasty taste, but in
the longer term your daughter or son will need to
know that they are taking medicine, and why.
My child has arthritis
2/9/11
15:27
Page 17
Managing pain
© Tony Northrup - Fotolia.com
Pain is unpredictable and affects each person with
JIA in different ways. You may feel helpless if your
daughter or son is in pain, but there is a lot you can
do to lessen its severity.
Children of most ages will respond well to postmedicine treats, such as daily stickers or a larger
treat after a week of ticking off their medication on a
chart. Encourage your child to take medication in a
quiet place to avoid making a fuss. You could make
your child feel less isolated by taking a dose of cod
liver oil yourself when they take their medication
(they may enjoy seeing you pull a face), or by giving
your other children a vitamin pill at the same time.
Older children, while still requiring your
encouragement, need to understand the impact of
not taking medication. Instead of alarming them,
calmly explain what the medication does. It can be
harmful to suddenly stop taking certain medication,
such as steroids, so discuss any problems with a
doctor or nurse as soon as possible.
If taking medication is an ongoing source of stress,
talk to your son or daughter’s doctors or the hospital
pharmacist. They may be able to suggest alternative
ways of taking medication, or alternative drugs. Your
GP could also refer them to a psychologist (or play
specialist for younger children) to help overcome a
fear of needles or break down negative associations
with medicine.
© WavebreakMediaMicro - Fotolia.com
Keeping calm and distracting or relaxing young
children by cuddling them, singing a song or letting
them hold a favourite toy may do the trick. It is rarely
a good idea to surprise them with an injection or a
mouthful of medicine as they may stop trusting you.
Numbing cream, an ice cube or a cold pack can help
to reduce the pain of injections.
■ Help your child to describe their pain – you
could draw a range of facial expressions and ask
them which one they feel like, or suggest they
draw or point to where it hurts. This may be a
useful way for shy children to communicate with
doctors. Older children may be able to score the
severity of their pain out of 10, or describe it as
stiffness, a dull ache or a sharp feeling.
■ Learn how your child acts when they are in pain,
as they may not be able to tell you, or may not
want to tell you. For example, they may change
their posture, become pale, quiet, angry or
clingy.
■ Comfort and reassure your child, by cuddling or
stroking them, reading a story or watching a
DVD together. This will help to distract them,
calm them and make their pain feel less severe.
See the box on page 18 for some practical steps to
try.
It can be upsetting for you to see your child in pain.
Try to relax yourself with breathing and visualisation
techniques to avoid them picking up on your anxiety.
17
My child has arthritis
2/9/11
15:27
Page 18
Possible pain relievers
■ Painkillers – useful, but not the only solution.
■ Warmth – a hot water bottle, warm bath or heat pack from a pharmacy, warming clothes on a radiator or
wearing thermal layers. Be careful not to scald or burn skin.
■ Cold – a pack of frozen peas or a cold pack from a pharmacy. Be careful to avoid cold burns.
■ Massage – ask your child’s physiotherapist to show you techniques.
■ Distraction – perhaps a favourite game, a silly story or upbeat music.
■ Visualisation – focus your thoughts on something that makes you feel calm and positive. This takes
practice.
■ Breathing techniques – deep, slow breathing helps to focus the mind elsewhere and relax muscles.
■ TENS machines – use electrical pulses to interrupt pain signals. A physiotherapist can advise you.
■ Complementary therapies – for example, aromatherapy, acupuncture and herbal supplements, may be
helpful but have no proven medical benefits. Discuss new therapies with your doctor before trying them,
as some may interfere with medication.
CASE STUDY – THE CHEEDYS
Emma and Paul have two sons. Seven-year-old Rhys has oligoarticular JIA.
Emma:
‘ We thought: “Our son can’t have arthritis – old people get arthritis.” Rhys doesn’t see himself as different.
Things are going pretty well. Rhys doesn’t have many bad days, mobility-wise, but stairs are an issue. He
and Dylan play and fight as brothers do.
The main problem is his mood changes – he’s been incredibly angry recently. I’m really stressed. We’re
waiting to see a clinical psychologist.’
Paul:
‘ Emma and I sit down and talk things through. We try to keep things as normal for Rhys as possible. He
plays football and rugby.
Normally it’s only in the evening that Rhys will say his ankle’s hurting. Every child is different but if
something hurts they won’t do it. Or if they really want to do it, they’ll do it anyway.’
We did a lot of research into the benefits and side effects of methotrexate before agreeing he could go
on it.’
18
My child has arthritis
2/9/11
15:27
Page 19
© Orange Line Media - Fotolia.com
Working with health and care
professionals
Who’s who
■ General Practitioner (GP) – your first port of call
for prescriptions, referrals to new specialists etc.
They are useful for advice between specialist
appointments, and for helping you to access
specialist medical care.
■ Rheumatology consultant/rheumatologist –
senior doctor specialising in arthritis and the
health of joints, ligaments and muscles.
■ Paediatric rheumatology nurse – nurse specialising in children’s arthritis.
■ Occupational therapist (OT) – offers practical
help in overcoming physical or other challenges
through techniques, aids or equipment. May
visit home or school to assess difficulties.
■ Physiotherapist – specialist in using exercise or
physical treatment to overcome physical injuries
or difficulties.
■ Podiatrist – specialist in treating foot problems,
which may affect overall posture and other joints
(also called a chiropodist).
‘
I find it hard when I go to hospital,
understanding what the consultants
are saying. They talk in their own
language. I have to ask: “What do
you mean, can you repeat that?”
’
Sharon, whose 10-year-old daughter has oligoarticular
JIA.
■ Ophthalmologist – specialist in eye health.
■ Radiographer – expert in using and interpreting
X-rays, ultrasound and other medical scanning
techniques.
■ Orthopaedic consultant – senior doctor specialising in bone and joint surgery.
■ Psychologist – specialist in the human mind or
behaviour.
■ Play therapist/specialist – hospital or clinicbased expert in the behaviour of, and communicating with, young children.
■ Social worker – help to secure support for
19
2/9/11
15:27
Page 20
© ChantalS - Fotolia.com
My child has arthritis
independent living, for example, through
personal care or respite for carers. May be
employed by a hospital or local council.
Parents have a vital role
You and your son or daughter will come across
numerous health and care professionals. You will
meet some of them regularly over several years. This
means it is vital to develop good, professional
relationships with them.
The specialists you meet and how they work together
will depend on your child’s circumstances and the
way healthcare services are structured in your region.
20
You may need to act as a link between various
healthcare professionals, sharing information and
chasing up actions.
Parents know their children better than anyone else
and this knowledge is invaluable when planning a
child or young person’s treatment. Parents have
choices and should play an active part in medical decisions. Some of the following can help you to do this.
■ Clearly explaining the day-to-day impact of JIA
on your child, being concise but precise.
■ Asking questions about proposed medication or
procedures – how long have they been used for
JIA, how effective they are, how often they are
My child has arthritis
2/9/11
15:27
Page 21
The Arthritis and Musculoskeletal Alliance
(ARMA) Standards of Care for Children and
Young People with Juvenile Idiopathic
Arthritis is a comprehensive guide to good
practice in the care and treatment of
people affected by JIA. You may find it a
useful reference tool if you think your
daughter or son is not getting access to all
the services they need (see page 33 for details).
If you feel you are not getting good advice from a
doctor, ask your GP about getting a second opinion. If
you or your child have a difficult relationship with a
specific doctor, ask your GP if there is anyone else
you can be referred to.
Appointments
Medical appointments can be intimidating and
exhausting, but they are important for your son or
daughter’s health. Learning about JIA will help you
and your child to get more out of appointments, by
enabling you to understand what the doctors say.
Searching for information online can be useful, but
remember not all information online is correct, up-todate or relevant to the UK. For details of sources of
reputable information on JIA, see page 32.
It is worth making the effort to prepare for specialist
appointments as they can feel infrequent and
disappointingly brief. Prepare notes on your daughter
or son’s symptoms, and any concerns and questions
– it is easy to forget what your child’s difficulties were
two months before, and it’s common to forget
questions in the heat of the moment. You may want
to take photographs or brief videos of your child on
bad days to show doctors during appointments.
© Engine Images - Fotolia.com
required, common side effects, any
alternatives.
■ Finding out what you can do to
support your child – for example, will
physiotherapy help, what activities
must be avoided, what over-thecounter medication could you use for
flare-ups.
■ Trusting your instincts – if something
doesn’t seem quite right about your
child’s behaviour or health, or if a new
treatment doesn’t seem to agree with
them, say so.
‘
Young people with JIA should start
spending time alone with health professionals, asking their own questions,
learning about their condition and
taking responsibility for their medication. In so doing, young people can
develop skills in communication,
problem solving and negotiation – all
of which are useful in the adult
world.
’
Dr Janet McDonagh, expert in child and adolescent
arthritis.
Be assertive and take notes of doctors’ answers for
future reference. If you can’t get answers to all of
your questions during the appointment, you should
be told where you can – perhaps by speaking to the
rheumatology nurse.
You may want to take another adult for support –
they could entertain/comfort a very young child while
you talk to the doctor or take notes while you ask
questions. Having your partner or a friend with you
can help you avoid feeling insecure or overprotective,
particularly if your child is relatively well on the day of
the appointment.
21
My child has arthritis
2/9/11
15:27
Page 22
As far as possible, it is a good idea to include your
child in all medical discussions – they may have
concerns that are different to yours. Children and
young people need to have an active involvement in
appointments, so they can explain exactly what
symptoms feel like, and so they can gradually take
responsibility for their own healthcare (see ‘Managing
their own health’ on page 30). Consider taking
siblings to some appointments, so they understand
what their brother or sister experiences and so your
child with JIA does not feel singled out.
‘
When Carys has appointments, I let
her answer questions. She will still look
to me for confirmation but I say:“You
tell the doctor how it feels”. Things
have come up in those conversations
that haven’t come up at home.
’
Fiona, whose 12-year-old daughter has oligoarticular
JIA.
Finally, consider treating yourselves to a takeaway
after an appointment, because you may be too tired
to cook.
1) Prepare key points and questions and take
them with you. Involve older children in this
process.
2) Take another adult if you can.
3) Involve your son or daughter as much as
possible. With older children and teenagers,
debrief after the appointment – discuss what
went well, how they could get more involved etc.
4) Take notes during or immediately after the
appointment or ask your doctor to write down
anything you think you might forget.
5) Be assertive.
22
© Monkey Business - Fotolia.com
Five top tips for medical appointments
My child has arthritis
2/9/11
15:27
Page 23
© Ned White - Fotolia.com
Helping your child manage their
arthritis
Knowledge
From a young age, try to explain to your children what
JIA is, and what specific treatment is trying to do. As
soon as your son or daughter is old enough, use
proper medical terms so that doctors’ language
sounds familiar rather than frightening. Be honest
with them about what to expect during medical
procedures, but don’t frighten them by going into
great detail. With younger children, focus on what will
happen today and tomorrow rather than in the future.
It’s a good idea to ask your child with JIA and their
siblings about arthritis on a regular basis to see how
much they understand. That way, you can nip any
misconceptions or unfounded fears in the bud.
Independence
It can be very important for a young person’s selfworth and confidence to be as independent as
possible. If energy levels and mobility affect being
able to do certain extracurricular activities or daily
‘
Addison still can’t tie shoelaces, so he
doesn’t buy shoes with laces. He struggles with buttons, so he leaves the top
few buttons of shirts undone and
slides them over his head. That way,
he doesn’t need help.
’
Alan, whose 18-year-old son has systemic JIA.
tasks, try to encourage independence in other areas
of their lives.
Let them do as much for themselves as possible. For
example, buying clothes with different fasteners or
brushes with extra-long handles may enable your son
or daughter to dress themselves and brush their own
hair instead of you doing it. Riding a bike, using sticks
or a wheelchair may mean they can visit a friend on
their own, instead of you taking them. It will give you
a break, boost their self-worth and help to prepare
23
2/9/11
15:27
Page 24
© Rob - Fotolia.com
My child has arthritis
them for adult life, with or without arthritis.
Involve your child in discussions and decisions about
the treatment and management of their arthritis from
a young age. This will help them to feel that they are
in charge of their JIA, instead of the other way round.
Encourage your child to adopt good posture, protect
their joints and remain as mobile as possible, to
minimise pain and retain flexibility. Your child’s
physiotherapist or occupational therapist will show
them how to use strong muscle groups and joints to
reduce the strain on weaker ones, when doing things
like getting up out of a chair or carrying bags. They
can also show very young children different ways of
moving and exploring to avoid pain.
Over time, help your son or daughter to pace
themselves to maintain a full and active life while
reducing flare-ups and fatigue. Many parents find
that they need to push their children to do more,
rather than stop them doing lots of things.
Help your daughter or son to keep track of their
activity levels and be aware of ‘tipping points’, levels
of exertion that will wipe them out later or the
24
amount of rest that will help them to manage a
whole party or family outing. As they get older they
can start to weigh up the pros and cons of being
active and resting for themselves.
Exercise
‘
My other children help Kayleigh with
her exercises, and make it fun. They
encourage her to go out and walk to
strengthen her muscles, otherwise
she’d sit on the sofa.
’
Michelle, whose 5-year-old daughter has polyarticular
JIA.
In general, exercise has a positive impact on physical
and emotional wellbeing. Although exercising can be
more challenging when a child has JIA, it is important
they remain as active as possible. Exercise is good
for everyone – not just children and young people
with arthritis. Try to become an active family, doing
regular physical exercise such as walks as a family.
As long as your son or daughter avoids specific
movements or activities that doctors have told them
are risky, being active can:
My child has arthritis
2/9/11
15:27
Page 25
© PackShot - Fotolia.com
Top tips for physiotherapy exercises
Many children and young people with JIA are advised
to do daily exercises. Persuading a child of any age to
do a repetitive routine of movements can be problematic, to put it mildly.
■ lessen stiffness
■ improve joint mobility
■ maintain strength in muscles that protect vulnerable joints
■ improve bone strength
■ combat stress
■ improve mood, confidence and body image
■ help to maintain a healthy weight.
■ Make sure you and your child both clearly
understand the purpose and specific technique
of the exercises.
■ Find a routine that works for you – perhaps do
the exercises on weekdays and take weekends
off.
■ Have goals relating to strength, mobility or
stamina. Track and reward progress.
■ Introduce some variety – work on one set of
joints or muscles for a few weeks and then
focus on others, or change the time and place
of the exercises. A physiotherapist can advise on
varied routines.
■ Make exercises fun – do them with your child,
do them to music or in front of the TV.
■ Be creative – doing stretches may be easier in a
warm bath, or the park could be a more inspiring environment for exercise.
■ Try to encourage rather than nag – focus on
positive achievements rather than shortcomings.
Tell any exercise instructors about your daughter or
son’s JIA so they can avoid specific movements that
may be harmful. Physiotherapists can liaise with
them to give specific advice if necessary. It is a good
idea for children and young people with JIA to wear
supportive and shock-absorbing shoes to reduce the
impact of exercise on their joints – a podiatrist will be
able to advise you on this. It may also help your child
to exercise at a time when they are neither too stiff
nor too tired, and to keep warm throughout.
© Uki - Fotolia.com
That’s fine in theory, but is difficult if your child
associates exercise with pain. Try to find a form of
exercise that they enjoy and can manage without too
much discomfort. Some activities may hurt at first,
but get easier over time. Swimming, water aerobics,
canoeing, cycling, yoga and dancing are all ways of
exercising without putting too much strain on joints.
Younger children can learn to be active through play –
and sometimes not realise they are even exercising.
Diet
It is important to ensure that a child or young person
with JIA eats a healthy diet, to help manage their
general health. There is very little conclusive evidence
for a link between specific foods and flare-ups so it is
important to stick to a well balanced diet. However, it
is important that young people taking medication,
such as methotrexate, do not drink too much alcohol
– ask your doctor for advice.
25
My child has arthritis
2/9/11
15:27
Page 26
Children and young people with JIA can benefit from
having plenty of calcium, vitamin D and iron-rich
foods to assist bone strength and to help prevent
anaemia. Doctors will advise you if this is the case for
your child, and whether this can be managed through
diet or by taking supplements.
Nutrition aside, JIA and its treatment can affect children’s and young people’s relationship with food. JIA
symptoms and some medication may change your
son or daughter’s appetite and taste in foods. Inactivity due to fatigue or limited mobility can lead to weight
gain, as can some drugs (notably steroids). Sometimes this is unavoidable, but it is worth remembering
that additional weight places extra strain on joints and
can have a negative impact on self-esteem.
26
Finally, food can become a subject of conflict
because it is an area where children and young
people with JIA can exercise control. Try not to
overreact if your daughter or son doesn’t eat much
or changes their eating habits suddenly. Trust your
judgement – sometimes it is better to give them a
packet of crisps than to let them go hungry, but
doing that on a regular basis won’t help anybody.
If you are concerned about any issue relating to food,
see your GP or discuss it with your son or daughter’s
specialist. As well as offering solutions themselves,
they may be able to refer your child to a dietitian or
psychologist.
My child has arthritis
2/9/11
15:27
Page 27
Independence into adulthood
‘
You have to grow up quite fast if you
have JIA – you’re constantly negotiating things to do with your body and
other people’s perceptions. It helped me
to work out who was worth bothering
with and who cracked the granny
jokes too often.
’
Clare, now 23, who was diagnosed with polyarticular
JIA at 13.
Preparing for the future
© Stephen Coburn - Fotolia.com
Around one third of children and young people with
JIA will have some form of arthritis in adulthood, but
the vast majority won’t. Many young people with JIA
manage to attend college or university, live
independently and have fulfilling careers, but these
activities may require extra planning or support. As
with parenting any child, preparing a young person
with JIA for adult life is a gradual, ongoing process.
Enabling your child to be as independent as possible
throughout their childhood makes it easier to ‘let go’
as they approach adulthood.
27
My child has arthritis
2/9/11
15:27
Page 28
CASE STUDY – THE DOWNERS
Alan and Joanne’s eldest son, 18-year-old Addison, has systemic JIA.
Alan:
‘ Emotionally, I don’t think Addison’s JIA has hit us that hard. Apart from the hassle of going up and down to
hospital, it hasn’t been too bad.
Addison is an adult and he needs to learn by his own mistakes. Joanne and I are trying to wean ourselves
off. We have to let him get on with his life rather than have arguments. He’s got his mobility car, so he can
do his own thing.
His best friend went with him to appointments a couple of times. That worked well. I do wonder if Addison
is asking the right questions and being honest with doctors about how things have been. I sometimes want
to go with him.’
Addison:
‘ My arthritis doesn’t bother me and it doesn’t bother my friends. It’s under control at the moment. I do
what I can. I go to appointments on my own. I know the doctors pretty well now.
Everybody helps me in my family. I can’t put socks on, so my sister and brother help. Parents have to say
no once in a while, so kids can do stuff themselves. It’s still nice to be supported though.’
Young adults
Having JIA presents additional challenges to young
people. Typical teenage behaviour, such as staying
out late or refusing to do what parents say, can
cause additional anxieties for parents if their son or
daughter has JIA.
Young people with JIA are acutely aware of any visible
signs of their condition, such as swollen joints, a
limp, mobility aids or supports. JIA sometimes causes
reduced or delayed growth, or delays in puberty and
to the growth of facial hair or voice breaking, which
can be particularly embarrassing. Medication may
also affect their hair. If this is the case for your son
or daughter, advise them to discuss with their
hairdresser whether they should avoid particular
hair treatments.
28
© Catherine Murray - Fotolia.com
More than at any other time of life, young people will
benefit from getting to know others in a similar
situation – to help them feel less isolated and to swap
tips. Arthritis Care has a specific online forum for
young people. Both Arthritis Care and The Childrens
Chronic Arthritis Association (CCAA) organise social
weekends for young people in several regions of the
UK. For details of these and other resources aimed at
young people with JIA, see page 32.
Do what you can to boost their confidence –
encouraging their friendships and participation in
social activities, hobbies and clubs is a great way to
do this. It is worth reassuring them that every young
person feels awkward about the way they look. Make
sure you and your son or daughter have honest
My child has arthritis
2/9/11
15:27
Page 29
discussions with their doctors about what to expect.
If their anxieties about their physical appearance
are severe or prolonged, ask for a referral to a
psychologist.
Your daughter or son may deliberately avoid wearing
splints or ‘sensible’ shoes, so they can look more like
their friends. Get them to discuss any embarrassment
with their occupational therapist, to agree acceptable
compromises. Perhaps supports could be worn at
night rather than during the day, or it may be OK to go
without orthotics on Saturdays.
Weight gain and a rounded face from being on
steroids can be a source of embarrassment for young
people. Help your son or daughter to maintain a
healthy diet and keep active, reinforce the positive
impact of steroids on their health and reassure them
that these effects are reversible when the course of
treatment finishes.
All young people value privacy, particularly from their
parents. This can be difficult if JIA limits a young
person’s ability to wash, dress and care for
themselves. Ask your child what might help them to
be more independent. Here are some ideas.
■ Installing a downstairs loo or shower.
■ Fitting a shower/taps with different controls.
■ Using a long-handled sponge to wash themselves.
■ Clothing styles, fabrics and fastenings that make
it easier to get dressed and undressed.
■ Wearing a vest and shorts to appointments to
avoid having to get undressed.
Your daughter or son’s occupational therapist can
advise you on useful aids and adaptations, many of
which may be subsidised by your local council or
health authority.
If your teenager is preparing to leave home, get in
touch with social services to find out about local
support available to assist independent living. If they
are planning to enter higher education, encourage
them to contact universities to discuss their support
for students with health conditions before applying.
Their school or college careers service and SENCO
may have useful information and advice. Your son or
daughter may also want to read Arthritis Care’s
Preparing for Higher Education factsheet, available
from www.arthritscare.org.uk/Factsheets
Social challenges of having JIA
Pacing themselves is a challenge for people of any
age with arthritis, but can be particularly tough for
young people because of peer pressure, exams and
wanting to be ‘normal’. Your son or daughter will
make mistakes in pacing themselves, but will learn
from this experience. Help them to work out whether
using aids, such as splints or sticks, at home may
assist them to do more while out with friends. Having
an early night on Fridays may mean they are better
able to socialise on Saturdays. Telling a few of their
close friends about their arthritis may make this
juggling act easier.
‘
Children often put too much pressure
on themselves at school. Dropping one
or two subjects at GCSE can make a
huge difference as can spreading your
education over a longer period. For
example, I took my A-levels over four
years but it hasn’t left me behind – I
now have a Masters degree.
’
Sally, now 29, who was diagnosed with polyarticular
JIA at 11.
Sex, drink and drugs are awkward topics for parents
to broach, but young people with JIA may need to be
particularly careful. For example, illegal drugs may
interfere with medication. Young people on
methotrexate should not drink much alcohol without
risking liver damage, and should be aware that
methotrexate can cause serious harm to unborn
babies. A young person may want to discuss these
issues directly with their doctor – who cannot tell you
what your child has said unless they are at risk of
serious harm. You may also want to direct your child
to Arthritis Care’s booklet Relationships, Intimacy
and Arthritis – available from www.arthritiscare.org.uk/
Booklets
Although it’s challenging to juggle school or college, a
social life and JIA, it is worth encouraging your
daughter or son to build up work experience through
weekend or holiday jobs or work placements. This
experience will broaden their social circle and build
29
My child has arthritis
2/9/11
15:27
Page 30
both their confidence and their CV. It will also help
them to find out what kind of work suits their
personality and skills, and is manageable with their
condition.
© Monkey Business - Fotolia.com
Transport
‘
As young people enter adolescence, they
need to make more decisions about
their health and they increasingly need
independence and privacy. Adolescents
and parents should share responsibility,
practising for the time when the young
person takes sole responsibility for their
own health. Transitional care will help
prepare parents and young people for
that move.
’
Dr Janet McDonagh, expert in child and adolescent
arthritis.
Travelling around on their own or with friends is
important to young people. Having JIA can make
public transport exhausting or stressful, as waiting in
the cold can cause stiffness and being jostled can be
painful. Work out acceptable compromises with your
son or daughter. For example, you giving them a lift
may enable them to stay out for longer than if they
travelled by public transport. Buses or trains in peak
hours may be best avoided if possible.
Some 16-year-olds who receive benefits because of
severely reduced mobility can learn to drive at 16, a
year ahead of their peers, which can be a great boost
to their confidence and independence. They may also
receive help towards the cost of driving lessons. See
page 32 for sources of further information.
Managing their own health
Managing their health and decisions about their
treatment is another gradual process for young
people with JIA, as they develop self-awareness,
knowledge about JIA and the confidence to work with
healthcare professionals.
medication diary from a fairly early age, to help them
understand their JIA.
Alongside this, help them to understand the
consequences of their actions, such as not taking
medication or not doing physiotherapy exercises.
Most young people go through phases of noncompliance, but this is part of growing up and
asserting their independence. Learning from these
experiences will help them to make confident and
informed decisions in the future. However, your
daughter or son should be honest with doctors if they
are not following their treatment plan, so that
alternatives can be discussed.
‘
Callum has been injecting himself for
more than six months. It gives him
some control and it makes it easier
when he goes to scout camp or goes
away with school.
’
Helen, whose 12-year-old son has psoriatic JIA.
Moving to adult healthcare services
Help your son or daughter to gradually take on more
responsibility. Every young person is different, but
from the start of secondary school they should have
a fair understanding of their condition and
medication. You could start by letting them fill their
medication dispenser under your supervision, and
gradually progress to taking medication without you
around. Encourage them to read clinic letters and
keep a list of questions for the doctor as well as a
30
Health professionals may discuss ‘transition’ with you
and your son or daughter when they are around 13
or 14 years old. This is shorthand for moving from
paediatric to adult health services at 16-18 years
old. If healthcare professionals don’t initiate this
discussion, ask them about transition yourself.
This process will vary depending on where you live –
some regions have specific adolescent healthcare
2/9/11
15:27
Page 31
© David Davis - Fotolia.com
My child has arthritis
programmes and others switch from paediatric to
adult services overnight. This process can be a
shock, because adult healthcare usually involves
seeing different doctors and nurses, often in different
hospitals. Adult healthcare services also tend to
focus on addressing specific health problems rather
than the wellbeing of the person as a whole.
Although young people are increasingly responsible
for their own healthcare decisions, there is nothing to
stop them choosing to still involve you if you are both
comfortable with that. It is important to realise that
young people have the right to medical
confidentiality, irrespective of age. That right cannot
be ignored unless there is risk of serious harm to
them or another person.
Top tips for involving older children in
appointments
1) Encourage medical staff to talk to your son or
daughter, rather than you. It may help if they sit
slightly closer to the doctor.
2) Ensure that your daughter or son understands
what is being said. If in doubt, ask doctors to
repeat themselves or explain complex language
(even better, encourage your child to say if they
don’t understand something).
3) Encourage your son or daughter to ask their
own questions. If they are too shy, you could
ask questions that they have prepared.
4) When they are happy to, get them into the habit
of seeing medical staff alone at the beginning of
appointments so they can discuss issues in
confidence, and then invite you in. At this stage,
encourage them to summarise the plan of
management they and medical staff have
agreed.
5) Encourage your daughter or son to manage the
diary of appointments and request repeat
prescriptions.
6) Support older children to contact the hospital
themselves with queries.
‘
I don’t see JIA hindering Carys in the
future. For now, it’s something we’ve
all got to manage. In time, if she still
has it, she’ll need to manage it herself.
It’s not something that stops her from
doing anything.
’
Fiona, whose 12-year-old daughter has oligoarticular
JIA.
31
My child has arthritis
2/9/11
15:28
Page 32
Sources of further help and
information
Arthritis Care
The Source is our free helpline for young people and
their families. Call 0808 808 2000 or email:
[email protected] (10am-4pm
weekdays).
Our website www.arthritiscare.org.uk includes lots of
useful information, and friendly forums where you
can chat to other people affected by JIA.
■ My child has arthritis forum – for parents.
■ Young people’s forum – for young people under
the age of 25 years old.
Our publications can be downloaded from our
website or requested from The Source (see above).
32
■ My Child has Oligoarticular JIA – a guide to the
condition and its treatment, leaflet.
■ My Child has Polyarticular JIA – a guide to the
condition and its treatment, leaflet.
■ My Child has Systemic JIA – a guide to the
condition and its treatment, leaflet.
■ Kids with Arthritis – a guide for families, Carrie
Britton PhD (4th ed, 2006). A comprehensive
book full of examples and advice. Available free
to families affected by JIA who contact The
Source (see above). A bilingual version in Welsh
and English is available as well.
■ Breakout – a booklet written by young people
with arthritis on what it’s like to live with arthritis.
■ Preparing for Higher Education, factsheet.
■ No Limits was Arthritis Care's magazine for
My child has arthritis
2/9/11
15:28
Page 33
young people with arthritis. It is no longer
produced, but back issues are available online.
■ Relationships, Intimacy and Arthritis is a booklet
aimed at adults with arthritis, but may be useful
for young people with JIA.
■ A Day with Sam is a story/picture book about
having JIA, aimed at children under 7.
Arthritis Care also runs workshops for young people
and their parents across the UK. For more
information visit www.arthritiscare.org.uk/Inyourarea
Other organisations
■ Contact a Family – www.cafamily.org.uk – is a
UK-wide charity for families with disabled
children. Its website includes practical advice
and information on benefits and entitlements. It
has a free helpline 0808 808 3555 (weekdays,
9.30am-5pm).
■ The Childrens Chronic Arthritis Association
(CCAA) – www.ccaa.org.uk – organise events for
children with JIA and their parents.
■ Arthritis Research UK – www.arthritisresearchuk.org – has information on medication
for JIA.
■ Olivia’s Vision – www.oliviasvision.org – is a
charity set up by the parent of a child with
uveitis, which offers information and support to
children and parents affected by it. Call the
helpline on 08450 758114 (weekdays, 10am12pm, 4pm-6.30pm).
■ The Department for Education website –
www.education.gov.uk – includes information on
changing regulations relating to special educational needs, but in the first instance you may
want to contact the SENCO at your son or
daughter’s nursery, school or college.
Other publications
Arthritis and Musculoskeletal Alliance (ARMA)
Standards of Care for Children and Young People
with Juvenile Idiopathic Arthritis (2010). A detailed
guide to best practice for the treatment and support
of families affected by JIA. Although these aren’t
compulsory standards, they may give you useful
insight into whether your child is receiving a good
service from health and care professionals. Available
as a PDF from www.arthritiscare.org.uk/
Youngpeopleandfamilies
Financial, practical and emotional support
The Benefit Enquiry Line can advise you on what you
may be entitled to. Call 0800 882200 in mainland
Britain, 0800 220674 in Northern Ireland.
The government websites – www.direct.gov.uk
(www.nidirect.gov.uk in Northern Ireland) – contain
useful overviews of the legal definition of disability,
benefits and grants available to disabled young
people or their carers and the eligibility criteria for
young people with severe mobility problems learning
to drive at 16.
Citizens Advice can advise you in applying for benefits
and on source of other grants and financial support.
Visit www.citizensadvice.org.uk for general
information or for details of your nearest branch.
For advice in England call 0844 411 1444.
For advice in Wales call 0844 477 2020.
Your local council will administer some support
services, including the Blue Badge free parking
scheme for people with severe mobility problems and
help with transport to local schools and colleges.
Your daughter or son’s social worker or occupational
therapist can advise on subsidised home alterations
or equipment to help with daily life. If you don’t have
a social worker or occupational therapist, ask your GP
for a referral.
If a member of your family needs professional help
with emotional problems, ask your GP for a referral to
a counsellor or psychologist or search for a private
counsellor on the British Association for Counselling
and Psychotherapy website: www.bacp.co.uk
For informal support, you may want to visit the
Facebook group Juvenile Arthritis Parents and
Families UK, which was set up by the parents of a
child with JIA.
33
My child has arthritis
2/9/11
15:28
Page 34
© mangostock - Fotolia.com
Glossary
For a list of education professionals, see page 13.
For a list of healthcare professionals, see page 19.
associated with JIA. They may be taken in tablet or
liquid form.
Biologic drugs – may be used if methotrexate does
not work by itself. These include anti-TNF drugs –
etanercept (Enbrel) and adalimumab (Humira). The
biologic tocilizumab (RoActemra) may also be given.
The availability of these drugs will vary across the UK.
Orthotics – include specialist insoles.
Disease-modifying anti-rheumatic drugs (DMARDs)
– medication, such as methotrexate (see below), taken
as a pill, liquid or injection to stop JIA progressing.
Statement – a statement of educational needs
(soon to be replaced by an education, health and
social care plan).
Flare-up – a temporary worsening of JIA symptoms,
which may last days, weeks or months.
Steroids – medication taken by mouth, injection or
drip to reduce inflammation. Eye drops are used for
children who have uveitis (see below).
Juvenile idiopathic arthritis (JIA) – general term to
describe several different forms of arthritis in children
and young people before their 16th birthday.
Methotrexate – a drug commonly used to treat
arthritis in children and adults. It is the most effective
drug for many people with JIA.
Non-steroidal anti-inflammatory drugs (NSAIDs)
– a group of drugs such as ibuprofen and diclofenac
that may be used to reduce pain and inflammation
34
Pacing – managing activity levels to avoid
unnecessary pain and fatigue. A key technique in
managing JIA and other forms of arthritis.
Transition – the process of transferring from
paediatric or adolescent health or care services to
adult services. It includes the process of a young
person with JIA managing their own healthcare.
Uveitis – an inflammatory eye condition associated
with JIA. It is more common with some forms of JIA –
like oligoarticular JIA – than others. Uveitis has no
outwardly visible symptoms so regular eye checks are
important, and it can be easily treated.
My child has arthritis
2/9/11
15:28
Page 35
NOTES
35
My child has arthritis
2/9/11
NOTES
36
15:28
Page 36
My child has arthritis
2/9/11
15:28
Page ii
Arthritis Care is here for everyone with arthritis but we rely on the support of
people like you. If you would like to make a contribution to our work, please phone
us on 020 7380 6540 or you can donate online via our website.
The development, printing and distribution of this booklet was supported by
Roche Products Ltd and Chugai Pharma Ltd. Full editorial control remained with Arthritis Care.
The Source is our free helpline for young people and their families.
Call
0808 808 2000
(weekdays 10am-4pm)
or email:
[email protected]
www.arthritiscare.org.uk
Arthritis Care, 18 Stephenson Way, London NW1 2HD
Registered Charity Nos. 206563 and SC038693
First published in 2011.
Our information is regularly reviewed. This booklet will be reviewed in 2013. Please check our
website for up-to-date information and reference sources or call 020 7380 6577.
Arthritis Care is now a certified member of The Information Standard. This means that you can be
confident that Arthritis Care is a reliable and trustworthy source of health and social care information.
ACR224