Supported by AbbVie All content and views expressed are those of Arthritis Ireland, not of the sponsors.
Arthritis Ireland: Building a better world for people living with arthritis today and a world without arthritis tomorrow. Arthritis affects so many people in countless ways and at all stages of life. The pain, stiffness and fatigue it causes are all too real – but so are the shattered dreams, sleepless nights and abandoned careers. At Arthritis Ireland, we understand what it’s like to live with this chronic condition. Everything we do is with a view to supporting people living with arthritis – to having a positive effect on your quality of life. That includes investing in research to find a cure, as well as advocating on your behalf with policy makers and politicians. This publication is just one aspect of our work. We understand how important it is to be able to access trustworthy information about your health from a reliable source. That is why we work with healthcare professionals and other experts in producing these materials. There are lots of other supports also available to you, including our: •
award-winning self-management programme, Living Well with Arthritis;
•
helpline for practical information and emotional support;
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extensive branch network all around the country.
If arthritis is affecting your life or the life of someone you love, call or connect with us online. Working together we can help build that better world for people living with arthritis today and a world without arthritis tomorrow.
Your contacts Arthritis Ireland helpline / landline
1890 252 846
Specialist nurse Consultant Physiotherapist Occupational therapist GP Education provider Childminder
01 6618 188
Contents About this booklet
6
1. What is juvenile idiopathic arthritis?
7
2. Types of arthritis
8
3. Diagnosing JIA
9
4. Your child’s healthcare team explained
10
5. Medication at a glance
14
6. Eye care
16
7. Managing flares
17
8. Physical activity: what’s all the fuss about?
20
9. Nutrition
21
10. JIA related challenges
22
11. Moving to “adult care”
24
12. Most common questions
27
Useful links
33
About this booklet At Arthritis Ireland, one of our goals is to reach out to everyone affected by juvenile idiopathic arthritis (also known as JIA and will be referred to as this for the remainder of this booklet) at the beginning of their journey and whenever needed along the way. Our aim is to support those with JIA to live as normal a life as possible, through understanding their disease and learning how to self-manage effectively so that they can achieve the goals they want in life. This booklet has been created with the shared expertise and knowledge from parents, healthcare professionals and JIA-at-NRAS (National Rheumatoid Arthritis Society) staff in the UK. It has been reviewed and verified for Ireland by the paediatric rheumatology team in Our Lady’s Children’s Hospital, Crumlin. This publication was created without input from AbbVie. The content and views expressed are those of Arthritis Ireland, not of AbbVie.
1. What is juvenile idiopathic arthritis? JIA is the name for several forms of arthritis in children and teenagers. Juvenile means the arthritis begins before your child is 16 years old, idiopathic means the cause is not known and arthritis means one or more of your child’s joints are inflamed – that is, they are swollen, painful, stiff and your child may not be able to move them as far as normal. JIA is an autoimmune disease, where your immune system gets confused and attacks healthy joint tissue, causing inflammation. Research is ongoing as to why this should occur. JIA can sometimes be seen in association with other autoimmune conditions. This inflammatory disease principally affects the joints but may also affect other organs including the eyes. Every year about 1 in 10,000 children in Ireland is diagnosed with the condition making it almost as common as childhood diabetes. There are roughly 1,200 children living with arthritis in Ireland today. It can begin at any age, although it most commonly shows up in younger children. It can develop in boys or girls, although most types are more common in girls. For the vast majority of these children, arthritis is not the same as in adults.
2. Types of arthritis There are several types of arthritis grouped together under the umbrella term JIA, however the symptoms vary. It is important to realise that just because something happens to one child, does not mean it will happen to every child. The different types of JIA tend to have different patterns and effects. At the same time, each individual child will respond differently to their illness and medicines. Oligoarticular arthritis Is when 4 or fewer joints are affected in the first six months. Your child may go on to develop arthritis in other joints after the first 6 months and this will then be called extended oligoarthritis. Polyarticular arthritis Is diagnosed when 5 or more joints are affected in the first 6 months. This can further be categorised as rheumatoid factor negative and much less commonly rheumatoid factor positive. Enthesitis related arthritis (ERA) Is when arthritis is associated with inflammation in the area where the tendons attach to the bone (enthesitis). Places where this can typically affect your child are the heel, the arch of the foot, the hips and knees. Psoriatic arthritis Can affect any joint but often involves the fingers and toes. There may have been a swollen, ‘sausage’ shaped toe, when your child was younger that got better on its own; this is known as dactylitis [dak-ti-litis]. Psoriasis is a scaly rash typically affecting the knees and elbows. Often, psoriatic arthritis is diagnosed when there is no evidence of psoriasis in your child but there is a family member with psoriasis. Systemic onset JIA Is diagnosed if your child has arthritis and a typical pattern of recurrent fever and rash.
Undifferentiated arthritis This means your child’s symptoms do not fit neatly into any one of the other types of JIA.
3. Diagnosing JIA A formal diagnosis of JIA should always come from a specialist paediatric rheumatologist working within a multidisciplinary team. However, prior to this, sometimes a suggested diagnosis may come via a physiotherapist, occupational therapist, paediatrician, podiatrist or GP etc. To get a diagnosis for your child you will need to provide the specialist with a history of symptoms such as swelling, pain etc. A clinical examination will be made, which involves looking at, feeling and moving every joint.
In addition, children and young people will need to have a blood test and an ultrasound scan or plain x-ray (or both). Taking shorts (for example) with you to this examination will make it easier for both parties. It can be helpful at diagnosis or just after to keep a folder for storing all information in one place. It’s easy to forget names, dates and times etc. The diagnosis is the first key step in determining the treatment plan. Once treatment starts the team’s aim will be to get the condition under control and ultimately into remission. Management includes medications, in conjunction with keeping your child active to increase stamina and strength. This will enable your child to get back to their daily activities and routine as soon as practicably possible.
4. Your child’s healthcare team explained Consultant paediatric rheumatologist or adult rheumatologist who sees children. The consultant will carry out a full examination and ask you lots of questions. He/she might also arrange for some blood samples to be taken, as well as x-rays and/or ultrasound scans. They will be responsible for diagnosing your child and they will also give you details of what the management plan will be (what they recommend to treat the JIA including physio, medication etc.) Here are some questions they might ask parent(s) of younger children: • What did you first notice was causing a problem for your child? • How long has this been going on? • Have you seen any different ways he/she has been doing everyday activities? • Has sleep been disturbed?
Here are some questions they might ask young people directly: • Where does it hurt? • What makes it feel better or worse? • When did you begin to feel the pain? • When do you typically feel pain? • Is the pain dull or sharp? • How long does the pain typically last? • Do you have swelling or redness of any joints? • What are you having difficulty doing that previously was not a problem?
Here are some questions you might ask: • Does my child really have arthritis? • What treatment will he/she need? • What is the reason for each medication prescribed? (For example, is it a painkiller or an antiinflammatory drug?) • When should I expect to notice an improvement? • How will we know if this treatment is working? • How will we know if there are any side-effects to the treatment? • Will he/she need regular blood tests? • How often will we need to be seen until my child is stable on treatment? • Also how often in general will my child need to be seen? • How and why should I get in touch between appointments?
Paediatric specialist nurse (or adult specialist nurse) A specialist nurse is a nurse who has gained a degree of specialist expertise, knowledge and skill in a particular area. They work closely with the consultants. They are critical to the delivery of high quality care. The nurse specialist is often the key person who has regular contact with families affected by JIA and provides education and support as well as ensuring that you can see other members of the multi-disciplinary team as needed, such as the physiotherapist, occupational therapist or podiatrist.
Physiotherapist A physiotherapist provides expert therapy to help maximise a child or young person’s movement and help them control the pain in their joints and muscles. The role of the physiotherapist is to facilitate activity and participation. They provide guidance on sports and activities. In addition, they provide advice and support on what exercises should be carried out between appointments at home and at school.
Occupational therapist (OT) An OT can help a child to take a more active role in life through helping them in areas such as playing and learning. They will also encourage participation in everyday tasks and if needed facilitate the changes in the environment to allow this to happen.
Ophthalmologist An eye doctor who will have expert knowledge of uveitis which is a condition that can be linked with JIA.
Podiatrist An expert in foot health. They will typically treat a wide range of problems affecting the feet, ankles and lower legs and will do a gait (walking) examination.
Psychologist A psychologist helps people with a number of problems, including their behaviour, thoughts and feelings.
Radiographer A radiographer is trained in how to operate and use sophisticated equipment to take images of the inside of different parts of the body. This can include plain x-rays, CT scans, MRI scans, ultra-sound.
If you don’t understand something, please speak up. Don’t be worried about asking for clarification on something the healthcare professional has told you. They are experts in the condition, but they are not experts in your child; don’t be shy, if you are unhappy and still anxious but have run out of time, write your question down and contact the specialist nurse or consultant by phone or email as soon as you can.
5. Medication at a glance It’s important to say that whilst it can be a scary prospect to consider that your child may have to take medication for many years, not taking the drugs recommended by the health professionals can have long-term consequences. Unfortunately, the evidence shows that not taking the recommended medication can lead to damaged joints which never recover. Untreated or under-treated JIA in children could result in further health problems. Your child will be continuously monitored, and sideeffects can usually be effectively dealt with in several ways. It’s a good idea to mention any health supplements or complementary medicine that your child has been taking and any side effects from the prescribed medication.
“It can take a while to find the right combination of drugs for your child. For many parents this is the hardest and most challenging time. Each drug has to be given a fair amount of time to work (sometimes months) and it can be incredibly frustrating - I remember thinking that I wasn’t sure I trusted the docs any more as nothing seemed to work, until finally it did! Health professionals will not stop until the disease is under control, so you may have to be patient yet persistent.” Quote from a parent of a child with JIA.
Medication at a glance Type
Example
Purpose & how medication is taken
Analgesics, also known as painkillers
Paracetamol (co-dydramol & cocodamol)
Help to control pain. Oral tablets and in liquid form
Non-steroidal antiinflammatory drugs (NSAIDS)
Ibuprofen (suitable for all ages) Meloxicam Naproxen
Ease pain and stiffness by reducing inflammation. Oral tablets and liquid form
Corticosteroids, also called steroids
Prednisolone (often given by injection directly into affected joints) or by tablets
Reduce inflammation and ease pain. Steroids are usually injected directly into the joint
Methotrexate
Usually the first DMARDs prescribed on diagnosis. These reduce the immune system ‘attack’. They take time to work (weeks, even months). DMARDs provide a way of controlling the disease over the long term, dependent on the type of JIA. Sulfasalazine and hydroxychloroquine are in tablet form only. Methotrexate comes in tablets, liquid form or sub-cutaneous injection
Disease modifying anti-rheumatic drugs or DMARDs Standard DMARDs
Sulfasalazine (usually only given to older children) Hydroxychloroquine (usually only given to older children)
Infrequent DMARD
Leflunomide
Only used occasionally and in tablet form
Biologic therapies
Etanercept
These drugs work by targeting particular chemicals or cells in the body’s immune system. They may be prescribed together with a standard DMARD. Etanercept and Adalimumab are given by sub-cutaneous injection and Tocilizumab and Abatacept are given by intravenous infusion
Adalimumab Infliximab Tocilizumab Abatacept Anakinra Canakinumab (rarely used)
6. Eye care Children and young people with JIA can develop inflammation in their eyes as well as their joints. This is called uveitis (you-vee-eye-tis). It tends to affect the child’s eyes over a long time (chronic) and mainly involves the front part of the eye. The number of children and young people with JIA who develop uveitis is 10-30%. In the early stages there are often no symptoms, however if they do occur they generally include eye pain, redness of the eye and blurred vision. If left untreated, uveitis can lead to gradual loss of vision and occasionally blindness. Therefore, it is vital that all children and young people with JIA are referred for assessment by an ophthalmologist.
Screening should start within 6 weeks of diagnosis of JIA. Children are seen regularly at differing intervals depending on their form of JIA and age. The guidelines from the British Society for Paediatric and Adolescent Rheumatology (BSPAR) and the Royal College of Ophthalmology give details of how frequently your child should be seen for screening. Visit their websites at: www.rheumatology.org.uk and www.rcophth.ac.uk/
You/your child will be asked about any problems with vision or any other symptoms related to their eyes. Your child’s eyes will be checked with a slit lamp which is a special piece of equipment that allows the ophthalmologist to look for any inflamed cells within the eye which could indicate uveitis. Your child may be asked to read a chart with letters/pictures/shapes from a set distance. The exact method depends on your child’s age and how co-operative they are.
7. Managing flares A flare is a severe episode of inflammation. It occurs when you have painful or swollen joints that won’t settle down, or your pain is increased. You may find it very hard to move, especially when you wake up. You may also feel generally unwell and very fatigued. Flareups can last a couple of days but they can also stretch to a month or so. JIA is a fluctuating condition, and whilst the healthcare professionals aim for control, there may be times when the conditions and symptoms are more active. This is called a flare. A minor flare could be anything from a slightly swollen finger, not impacting daily routine,
to something more significant, causing morning stiffness and difficulty doing normal things like coming down the stairs and doing up buttons. When newly diagnosed it is important to ask the consultant or specialist nurse what specifically you should look out for during a “flare� and how to support your child; this will help to determine whether you should or shouldn’t get in touch. The doctors and nurses are very supportive and happy to help you with advice on how to self-manage JIA in between clinic appointments. During a flare one or more joints will become inflamed and feel tender/painful. If the joint is hot to the touch, the skin looks red and/or your child has a fever, it is important that they are seen by a healthcare professional promptly. This is to ensure that there is no infection in the joint (this is not common but does need urgent treatment if this happens).
A flare can happen at any time, especially after an illness or a stressful period such as school exams. Along with an increase in joint pain, stiffness and swelling, your child may be feeling exhausted, and in a low mood. The more your son or daughter keeps moving, the less their joints are likely to seize up; maintaining joint movement will help reduce the stiffness. This is especially important when you consider that your child is growing and ensuring that joints maintain their full range of movement is key to avoiding longer term limitation of movement. Managing these flares and the pain and fatigue that usually come with a flare can involve the use of several strategies; these include non-drug treatments such as using heat (e.g. a hot bath or heat pad) and cold (e.g.
a bag of frozen peas on the joint, always wrapped in a tea towel) and relaxation and distraction techniques. Maintaining movement in all joints is important, as mentioned above, even in a flare, so gentle regular exercises will help to reduce stiffness when flaring.
Use painkillers effectively by ensuring that your child takes them regularly and doesn’t wait until the pain gets worse. Many common relaxation techniques combine breathing deeper with relaxing the muscles. Such techniques obviously work better for older children who can understand what is being suggested. For some young people the first couple of times they try to deliberately relax can be challenging; it’s hard to focus, seems like a waste of time and isn’t working. Please encourage them to persevere and don’t give up on it too quickly. Yoga and stretching are both good forms of exercise that can help to improve breathing and relaxation. Listening to music and “toe tensing” (repeatedly tightening and relaxing your toes) can also distract from the pain. There are lots of clips on YouTube about relaxing. The point is to focus on something other than the discomfort. Again, this is an activity best suited to older children and teenagers.
8. Physical activity: what’s all the fuss about? It is important for children with JIA to keep active. Muscles and joints need to be used regularly to maintain their function, so sports and keeping physically active help keep the joints and whole body healthy. When children have had JIA for a while they might not be using their muscles properly, meaning the muscles become weaker, which causes extra aches and pains. Children and young people don’t have to give up sport because of JIA. For advice about how to start and build activity levels up, please speak to the physiotherapist in the team at the clinic. They may advise on specific exercises to help your child to be skilled and imaginative with the activities and sports they enjoy. These can include group and individual sports, dance, cycling, swimming and martial arts. For children and young people with arthritis it is even more important that they are active. Activity will help keep them healthy and develop the best muscles to support their joints. They should be encouraged to participate in PE and activities at school and home. This will build their fitness levels up, support good selfesteem and allow them to keep up with their peers. When starting any exercise, you will need to gradually increase the time you exercise or are active for. It is also normal to feel achy after you work your muscles as they are getting stronger. Try to incorporate exercise into your child’s week and spread it across the days to pace the activities outside of school or crèche.
9. Nutrition A healthy eating plan is all about providing the body with the correct number of nutrients so that all the processes that take place in the body and the organs can function well. Food and drink provide nutrients and energy for the body to carry out everyday activities like walking and moving. Calories are the stored energy in any food or drink but some food substances contain empty calories. In other words, the foods that contain empty calories generally provide nothing else, so no nutrients, and do nothing for us at all like fizzy drinks and sweets! These should be avoided or only consumed occasionally. Eating well and exercising supports brain function and general well-being; however, a young person or child who has JIA might turn to food as a comfort and so it can be really challenging to keep to a healthy eating plan. Being overweight and having sore joints are not a good combination and it is likely the arthritis will be affected negatively the more overweight the child or young person is. A healthy diet is good for general health and is particularly important when someone has a health condition like JIA. A diet that is low in unnecessary fats and sugars, but high in vitamins and minerals and other nutrients is recommended. If you are concerned or want to check if you are providing a balanced diet, talk to your healthcare professional who will be able to provide advice and an appropriate eating plan. Sometimes children and young people need to hear the facts from someone other than mum or dad for them to take the guidance on board and remember, when someone is unwell it is much easier to get them to eat when the plate of food looks and smells good.
10. JIA-related challenges When newly diagnosed, it’s a good idea to think about who needs to be told what and why. The “why” in practical terms will help the person who receives the information understand the impact JIA has on your child and their role in providing suitable support. JIA is not as common as some other childhood conditions and so there is a good chance that other people in your child’s life will not have any knowledge of the condition. For example, there could be frequent hospital and GP visits and there may be limitations on what activities your child can take part in during the early period following diagnosis whilst the treatment plan is settling in. Children and young people may experience pain and restriction in getting around and just doing normal day to day activities. Long-term conditions like JIA don’t just affect the child; the whole family is affected. The family could be involved in major changes to priorities and daily schedules. It’s important to understand the impact that looking after your child and understandably giving them extra care and attention, can have on their siblings. It can explain changes in behaviour which may seem less than helpful at times. With younger children, it might be useful to keep a diary of how your child is feeling. There are some good “feelings” information sheets you can download from the internet to help with communication and understanding.
These are made up of cartoon faces demonstrating various moods (happy, sad, frustrated, angry) and can be used to help your child to express to you their mood. You can keep a record of this to show to the healthcare professional. Most children don’t like to stand out from the crowd and they usually don’t want others to see them in pain or feeling uncomfortable; this may lead to them wanting to stay off school or nursery and losing their confidence. As they get older, children and young people will naturally push against the boundaries set and test their independence, as all young people do. During these times, try to remain firm over the things that they have no choice over, like taking medication. If you say “would you like to take your medication now?” the chances are they will say no! Support your child to be resilient – the ability to adapt well to adversity, or even significant sources of stress. Resilience is an important attribute which can help with all that life can throw at us, for example, teaching them to accept change as being part of life – like when children move up in school or when we have goals that are no longer obtainable, and we must change them for more reachable ones. Reassure your child that this disease is not their fault and try to avoid overprotecting them as they can miss out on activities with their friends. Overprotection, whilst understandable, won’t help their developing knowledge or independence. If you think your child is suffering with low self-esteem, feeling isolated or generally low, make sure you ask the specialist nurse or consultant if there are any resources to help. Your GP may also refer you to local psychology services or counselling support.
In addition, you can call the Arthritis Ireland Helpline for support on Lo Call 1890 252 846 or 01-6618188.
11. Moving to “adult care� Transition is the process of preparing young people for transfer to adult services, it begins around the age of 12 to 14 years and is completed at the age of 16. This might start with asking the young person one or two simple questions with their parent or guardian present and eventually seeing them for a short while on their own, helping them to understand JIA and their medications. The transfer process should be gradual and guides the young person in understanding and being in control of their own healthcare. This means they will attend a different hospital when they are under the care of an adult rheumatologist. If the young person is supported by an adult rheumatologist from the start, the transfer will be slightly different because they will already be under the care of their adult rheumatologist!
If no-one has mentioned transition by the time the young person is approximately 14 years old, we would encourage parents to ask their consultant or nurse about it. It’s important that parents understand the transition process the young person will go through so that they can reassure them and support the transition plan. Part of the transition plan will be to consider what happens if the young person leaves home to attend college, university or other further education settings as they will need to be referred by their existing team to a unit which is close to where they will be doing their course/further education so that they can access help when they need it and maintain follow-up care as necessary.
Young people need to start taking personal responsibility for things like taking their medication without parental input/nagging. Not taking their medication regularly can result in flares and affect long term outcomes, so making sure your child understands the importance of personal responsibility in this respect is vital. As mentioned above, the process for transition does vary but generally a plan will be put in place and it won’t be a case of one day attending a new and different clinic with new doctors and nurses who they have never met before. The important thing is not to get lost in the system and for the young person (and you as their parent or guardian) to know and understand what the transition plan is. This plan should include the names and contact details of those in the adult clinic. If you don’t hear from the adult clinic about a future appointment contact them and mention it to your paediatric team. In general, your child will continue to attend the paediatric service until they have attended the adult rheumatologist at least once.
During the transition process the young person will get the opportunity to see the paediatric doctors and nurses without their parents (after 16 years old they automatically have that right too). Arthritis Ireland have developed the Fizz Transition Resource to help guide teenagers through the complex range of physical, psychological, social and emotional issues they face as a teenager living with arthritis. It’s full of useful information and tips to help them with their health, life, education and future. It will show them where to go to get more information and support as they move towards adulthood. Having the correct information, and knowing what supports are available should make the transition from childhood to adulthood a little easier.
To view the Fizz Transition Resource visit www.arthritisireland.ie
12. Most common questions How long does it take from being diagnosed to starting treatment? Once you have seen the rheumatology doctor, they are likely to make a management plan which often includes medication and advice about keeping active. The doctor and nurse specialist will talk you through the medication, dosage and how to take it. There is a lot of support available to help you at this time, visit www.arthritisireland.ie or call the Arthritis Ireland Helpline on 1890 252 846 or 01 6618188.
What are the risks of taking the medication? Your consultant or nurse specialist is in the best position to answer this question in relation to your child; they will tailor treatment according to your child’s condition, age, likes and dislikes and any other conditions.
Why do I have to keep giving the medicine? Many of the medications used to manage JIA are long-term medications, therefore they are normally taken for 2-3 years, or sometimes longer. The aim is for your child to be in remission (no active arthritis) and it is usual to keep taking the medications, so that the JIA stays away and to enable your child to keep doing all their normal activities. Medications are given to reduce stiffness and pain and to prevent potential joint damage from occurring. It is recognised that children sometimes get fed up of taking medications or refuse them and if this occurs it’s important to talk openly with your doctor or nurse, so you can work out the best treatment plan together.
What’s causing the stiffness or pain? JIA is caused by the immune system getting confused and attacking the joint lining, creating extra fluid that causes swelling and often limits the movement of the affected joint. This causes stiffness and pain that is typically worse in the mornings or after periods of inactivity (e.g. sleeping or a long car journey). Children, especially young ones, will not always complain of pain, but a sign of active JIA may be limping in the morning because of an affected knee. The stiffness caused by arthritis normally eases off once the child or young person gets moving, so keeping active is really important.
What do I do when he/she is in pain? If your child is very young, try using their favourite toy to help them communicate where the pain is. Think about what your child likes that might distract them from the pain, a game with you or warm bath; a heated wheat bag or cold compress wrapped in a tea towel and placed on the painful area. Ultimately you know your child better than anyone, if you think it is necessary, you could also take them to your GP or A&E if you are worried.
Preparing for procedures (possibly painful) To reduce possible upset brought on by the thought of a painful procedure like an infusion or injection, it is important to prepare your child for any likely anxiety by explaining briefly and truthfully, in age appropriate language what the procedure involves. It is best to avoid statements like ‘this is going to be painful’ or ‘it’s going to hurt’. It is recommended to describe the probable feelings associated with the procedure; for example, it may sting, pinch, tingle, burn or throb etc. depending on the situation. Allowing the child to play nurse/doctor and patient where the child pretends that they are making teddy or dolly better by using some medical supplies (eg. syringes, medicine spoons etc.) may also reduce some of the distress associated with procedures.
Will my child’s JIA ever go away? A number of children and young people do go into remission (there is no active disease) at some point and don’t necessarily carry the disease forward into adulthood and the arthritis may go and then come back after a long period. The healthcare team’s focus and priority is to get your child into remission (on or off medication), so they can remain active, leading a normal life. In the last 15 years, the medication and treatment for JIA has advanced, with greater understanding about how to manage the disease and more access to very effective medications. This means children and young people’s outcomes are positive and the possibility of impairment has dramatically reduced. Get to know all the team members looking after your child. Ask all the questions you need to and together you will achieve the best chance of a positive outcome.
What’s the best way I can support my child now? It is normal to feel angry and frustrated and possibly a little scared when your child has been diagnosed with JIA. If you are feeling overwhelmed, talk things through with trusted friends and loved ones or someone in the rheumatology team. Try to make sure you keep every appointment with a health professional and have questions ready to ask while you are there – remember no question is a silly question. Keeping a diary, especially in the early stages, can be helpful to you and the health professional team as it’s not always easy to try and remember everything that’s happened or on which days symptoms may have been worse for example. Ensure you fully understand how to use the medication most effectively, and what is the correct dose for your child’s age and weight. Get up to speed as quickly as you can on the importance of exercise, what’s best for their condition, how to make sure your child is pacing (not overdoing it) themselves etc. Speak to the specialist nurse and physio about what is most appropriate for your son or daughter.
Your child may have a long-term condition, but they still need to respect you, the household and other members of the family. Although sometimes easier said than done, listen to them, always try to communicate in a calm way and try to be mindful of what you and your child need. It’s easy to pay less attention to other children/siblings when you have a son or daughter with a disease like JIA as you may feel they need more attention and support. However, this can cause disruption so trying to keep life as normal as possible for the whole family can help.
Who knows arthritis better than those who live with it? Arthritis Ireland’s JIA Mentors are adults who themselves either have or have had juvenile arthritis and can provide you and your family with valuable insight and support. They can pass on the benefit of their experiences with arthritis, helping you to better understand your condition and its effect on your life.
A JIA Mentor is only a phone call or email away. Call the Arthritis Ireland Helpline on Lo Call 1890 252 846, 01-6618188 or email info@arthritisireland.ie for more information. Is it my fault? There is no fault involved. No-one can really pin-point how, when or why children and young people get JIA – it’s not a preventable disease. Worrying and blaming yourself is emotionally and physically draining. It’s hard, but instead of having unproductive thoughts focus on your family and moving forward with JIA in the best and most positive way possible.
What should I tell the nurse or consultant at future appointments? It’s a good idea to describe what the best day is like and what the worst day is like. What your child can do and what he/she can no longer do. You should also tell the nurse or consultant about any concerns you may have about giving the medication or any side effects your child may be experiencing. Every meeting with a healthcare professional is an opportunity for you and your child to learn more about JIA, how to manage it well and to raise concerns of any nature that you may have.
What should I tell the crèche/school? After receiving a diagnosis, you should inform the educational establishment that your child attends. It is unlikely that they will have much, if any, knowledge of JIA, so think about what they would need to know to make your child’s time there easier and what support they should provide. The specialist nurse, or if you have access to an occupational therapist, is probably the best person to help with some key points and they might include information about morning stiffness, tiredness, pain and medication, exercise etc.
Useful links Arthritis Ireland 1 Clanwilliam Square, Grand Canal Quay, Dublin 2 Talk to us: 1890 252 846 or 01-6618188 Email: info@arthritisireland.ie www.arthritisireland.ie Our Lady’s Children’s Hospital National Centre for Paediatric Rheumatology Crumlin, Dublin 12 Tel: 01 409 6256 www.olchc.ie Temple Street University Children’s Hospital Temple Street Dublin 1 Tel: 01 878 4200 www.cuh.ie iCAN (Irish Children’s Arthritis Network) Ballydavid, Bansha Tipperary, Co Tipperary Tel: 086 828 9817 Email: icanireland@gmail.com www.icanireland.ie
Supported by AbbVie All content and views expressed are those of Arthritis Ireland, not of the sponsors.
