JIA EXPLAINED. For parents and carers of children and young people with juvenile idiopathic arthritis

Transcription

1 JIA EXPLAINED For parents and carers of children and young people with juvenile idiopathic arthritis

2 Contacts JIA at NRAS free-phone Helpline Specialist Nurse... Consultant... Physiotherapist... GP... School Nurse... Childminder... School... Nursery... Other... Other...

3 Contents About this booklet 4 1. What is JIA? 5 2. Eye care 7 3. Other challenges 8 4. Top ten questions 9 5. Who does what in the health care team? Nursery/child-carer, school and family Not feeling so good today (flaring) Medication at a glance How to search the internet safely How to speak to your nurse, consultant or other health care professional Physical activity, what s all the fuss about? Food and diet Getting older moving to adult care 26 Useful links 28 3

4 About this booklet This booklet has been created with the shared expertise and knowledge from parents, health care professionals and JIA-at-NRAS staff. We hope that it provides you with the right amount of information and sign-posting to help you and your child or young person with JIA. Our goal is to be there for everyone affected by JIA right at the start of their journey and whenever we are needed along the way and to help them to live as normal a life as possible, through understanding their disease and learning how to self-manage effectively so that they are able to achieve the goals they want in life. The facts and advice given in this booklet have been checked and verified by a multidisciplinary team working in paediatric rheumatology and they are in line with current management of JIA in

5 1. What is JIA (juvenile idiopathic arthritis)? Approximately 12,000 children and young people in the UK have Juvenile Idiopathic Arthritis (JIA) which represents 1 child in every 1,000 under the age of 16. There are approximately 1200 new cases of JIA diagnosed every year. 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. Juvenile means a child aged less than 16 Idiopathic means unknown cause Arthritis means inflammation of the joint(s) We have described below the different types of JIA because the treatment regimes will vary from one form of JIA to another. There are also variations in the parts of the body affected, for instance the lining of the joint, the surrounding tendons and which joints are involved. Oligoarticular arthritis - this 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 this can typically affect your child are the heel, the arch of the foot or around the hips. 5

6 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-li-tis]. 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 and some typical changes to the nails. Systemic onset JIA - is diagnosed if your child has arthritis and a persistent rash and fever. Undifferentiated arthritis - this means your child s symptoms do not fit neatly into any one of the other types of JIA. A formal diagnosis of JIA should always come from a paediatric specialist rheumatologist working within a multidisciplinary team. However, prior to this, sometimes a suggested diagnosis may come via a physiotherapist, occupational therapist, paediatrician or podiatrist etc. To get to 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, and feeling and moving every joint. In addition, some children and young people might 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 JIA under control and ultimately into remission. Management includes medications, as well as 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. JIA is a fluctuating condition, and whilst the health care 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 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 s important to ask the consultant or specialist nurse what specifically you should look out for during a flare and how to support your son or daughter; 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. 6

7 2. 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%. Screening should start within 6 weeks of diagnosis of JIA. 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. 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. Also 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. In summary, they should be seen every 2 months for the first 6 months after diagnosis of JIA, checks should then be every 3-4 months up to the age of 12. After this age, children are able to identify and report any changes in their vision themselves unless they have for example an additional learning need, in which case the consultant may recommend regular eye screening. You can find more information on eye care on the JIA website. 7

8 3. Other challenges In addition to the obvious symptoms of JIA, children and young people may experience some negative reactions from their friends and peer group. For instance, where they cannot join in with an activity, sometimes they might experience feelings of isolation and frustration. With younger children, it might be useful to keep a diary of how your child is feeling. There are some good feelings info 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 health care 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 have to 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. There are many useful organisations who can provide information on benefits including Contact a Family and 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. In addition, you can call our JIA team for support on

9 4. Top 10 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 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 and more information can be found on our JIA website or call our free phone helpline on 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. Under the section on treatment on the JIA website you can find information on side effects. There are a lot of sites but only use sites recommended by other parents you trust or a health care professional in the team. What s important is the treatment plan which has been agreed upon for your child; the recommended dosage(s) of drugs and what else is being taken/carried out alongside. We have a section on our website specifically about medication: 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. 9

10 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, call the specialist nurse helpline and 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 10

11 or dolly better by using some medical supplies (eg. syringes, medicine spoons etc.) may also reduce some of the distress associated with procedures. What is uveitis? Eye inflammation, (uveitis) can occur in approximately 15% of children with JIA. It most commonly occurs in young children and those with oligoarthritis; but it can also be seen in other types of JIA. Due to a lack of symptoms in the early stages it can be hard for you or your child to know when they have uveitis. Therefore, your child will need regular eye checks (screening) using a device called a slit lamp, by an eye specialist is essential to check for uveitis. Uveitis can be present before JIA is diagnosed, at the beginning of JIA or at any time after diagnosis. Most cases are mild and respond to short courses of steroid eye drops. Long-term medication, such as methotrexate is used to manage persistent or more severe uveitis. Persistent inflammation causes damage to the eye and can result in loss of vision, so it is very important your child has eye screening and treatment if it is detected. You can find out a lot more about uveitis and see videos by experts on this subject on our website at 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. Approximately 30% of children will have active JIA in adulthood. The health care 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 really 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 son or daughter. 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. There are also a number of Facebook pages for parents and teenagers which you can join for support in managing your son or daughter s JIA and there is a really supportive social site called HealthUnlocked where parents and carers of children with JIA discuss all sorts of issues and challenges. 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 11

12 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 (section 11), what s best for their condition, how to make sure your child is pacing (not overstretching) themselves etc. Speak to the specialist nurse and physio about what is most appropriate for your son or daughter. As mentioned above, keep a diary and take photographs, this information may be useful when you have your next appointment. Your child may have a long term condition but they still need to respect you and 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. Is it my fault? There is no fault involved. No-one can really pin-point how, when and 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. 12

13 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 taking the medication or any side effects they may be experiencing. Every meeting with a health care professional is an opportunity for you and your son or daughter to learn more about JIA and how to manage it well and to raise concerns of any nature that you may have. What should I tell the nursery/school? It s really important that once you get a diagnosis you inform the educational establishment that your son or daughter 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 an occupational therapist (OT) if available) in clinic 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. Managing JIA in School is an A5 colour booklet for education settings; It provides the right information to your son or daughter s educational establishment so that they can help them and you in the best way whilst there. Please get in touch by or phone to ask for free copies to be sent. jia@nras.org.uk or call Who else can I talk to about this? Who s going to give me straight, accurate answers? JIA-at-NRAS is part of The National Rheumatoid Arthritis Society and specifically supports parents, carers and their children and young people with JIA. We have a dedicated team for telephone support, a very informative website and access to HealthUnlocked the UK s only online community for parents of children with JIA. Here is the link to our HealthUnlocked community: People with similar health interests reach out to others and pool together a mixture of information, support and experience to empower and change the lives of others. We have listed at the back of this book the contact numbers for organisations who also offer support for you and your family. 13

14 5. Who does what in the health care team? 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 anti-inflammatory drug?) 14

15 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 are able to see other members of the multi-disciplinary team as needed, such as 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 a school or nursery. Occupational Therapist 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. Phlebotomist Is an expert in taking blood from a patient. Ophthalmologist An eye doctor who will have expert knowledge of uveitis which is a condition that can be linked with JIA. There is a video of an eye examination on the JIA website. See next section on eye care for more information on uveitis. Podiatrist An expert in foot health. They will typically treat a wide range of problems affecting the feet, ankle and lower legs and will do a gait (walking) examination. Psychologist Psychologists help 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. 15

16 6. Nursery/child-carer, School and Family 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. 16

17 Managing JIA in School is an A5 booklet aimed at supporting school staff and parents alike, supporting a child with JIA in an educational setting. It is available in hard copy, please jia@nras.org.uk or call to get two copies sent (one for you and one for the school) or it can be downloaded from the website. 17

18 7. Not feeling so good today (flaring)? The text book says - A flare can be described as: any worsening of disease activity that would, if persistent, in most cases lead to initiation or change of therapy; and a flare represents a cluster of symptoms of sufficient duration and intensity to require initiation, change, or increase in therapy. In plain English 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 health care 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 18

19 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 a number of 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 pain killers effectively by ensuring that your child takes them regularly and doesn t wait until the pain gets worse. 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 for older children and teenagers rather than young children. Many common relaxation techniques combine breathing more deeply with relaxing the muscles. Such techniques obviously work 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 19

20 8. 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 which the health professionals recommend can have long term consequences. It is never an easy decision to put your child on long term medication, but unfortunately the evidence shows that not taking the prescribed medication can lead to damaged joints which never recover. Your child will be continuously monitored and side effects can usually be effectively dealt with in a number of ways. Untreated or under-treated JIA in children could allow the development of other conditions and further health problems. 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 20

21 Type Example Purpose & how medication is taken Analgesics, also known as painkillers Non-steroidal antiinflammatory drugs (NSAIDS) Corticosteroids, also called steroids Paracetamol (co-dydramol & co-codamol, not suitable for children under 12) Ibuprofen (suitable for all ages) Meloxicam (not for under 12 years) Naproxen (not for under 5 years) Prednisolone (often given by injection directly into affected joints) Help to control pain. Oral tablets and in liquid form Ease pain and stiffness by reducing inflammation. Oral tablets and liquid form Reduce inflammation and ease pain. Steroids are usually injected directly into the joint Disease modifying anti-rheumatic drugs or DMARDs Standard DMARDs Methotrexate Sulfasalazine (usually only given to older children) Hydroxychloroquine (usually only given to older children) 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 Infrequent DMARD Leflunomide Only used occasionally and in tablet form Biologic therapies Etanercept Adalimumab Tocilizumab Abatacept Canakinumab (rarely used) 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 There will always be an army of well-meaning but ill-informed people out there who want to offer you everything from yoga to snake venom as cures. Everyone has a friend who has tried to persuade them to ditch the toxic drugs and give their child a herbal remedy etc. If there was a safe and easy cure, the NHS would have adopted it by now. It is helpful to politely but firmly remind these friends that you are under good care and JIA which is not controlled carefully can do more damage than the side effects of the drugs used. Quote from a parent of a child with JIA 21

22 9. How to search on the internet safely The internet has changed the way we now search for information and much of the time it is a great resource. However, when you first learn that your child has been diagnosed with a long term condition, the chances are you will turn to Google ; you will have got home from the clinic visit and thought of a million additional questions and there won t be anyone on the end of the phone or to answer those questions. Here are some tips so that you don t get bombarded with out of date, irrelevant information which may also come from another country. 1. Search engines will always prioritise what it thinks is the most relevant to your initial question. 2. Avoid the random eye-catching results e.g. five things to do if you have JIA. These are clickbait articles that are written to attract attention and draw visitors, and are not necessarily a reliable source of medical information. 3. We have links to other reputable organisations who can help on our website 22

23 10. How to make the most of your time with the nurse, consultant or other health care professional A visit to see someone in the health care team is your time to talk, ask questions and learn! It s important to share information about how the child is feeling, even if it s embarrassing. More often than not the health care professional (HCP) will ask relevant questions and so it will be easy to update them. If there have been any symptoms recently, share these. Share information on emotional health, for example stress or if life is changing in any way. It s a good idea to mention any health supplements or complementary medicine that your child has been taking with and any side effects from the prescribed medication. If you don t understand something, please speak up. Don t be worried about asking for clarification on something the health care 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 as soon as you can. 23

24 11. Physical activity: what s all the fuss about? It is really 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 self-esteem 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 across the days to pace the activities outside of school or nursery. 24

25 12. Food and diet 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 those 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 you are providing a balanced diet, a nutritionist or dietician 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 in order 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. 25

26 13. Moving to adult Care Transition is the process of preparing young people for transfer to adult services and begins around the age of 12 to 14 years. 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 sometimes means they will attend a different hospital when they are under the care of an adult rheumatologist. Some centres will have an in between team (adolescent care) who will keep the teenager under their care until the health care professionals feel the young person is ready to move over to the adult team. Where 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! A young person s transition varies between paediatric centres. Some transition at a specific age which might be 16 or 18, other paediatric units keep the young person until they have finished formal education. 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 across the country 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. 26

27 If you don t hear from the adult clinic about a future appointment when the young person has transferred and can t, contact them, go back to the children s clinic and get support. Transition will happen only if the young person is well and the timing is right. 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). If you have found this useful, it is one of several resources available from NRAS. Please contact Anne Gilbert via anne@nras.org.uk or phone on

28 Useful links These pages provide information on some of the most common medications used in the treatment of JIA. A forum for parents of children and young people with JIA. Ask questions, write a blog and support each other. The Information, Advice and Support Services Network offer free confidential advice on school and education for children and young people (and their parents or guardians) with a long-term condition or a special education need. The Children s Chronic Arthritis Association host two family support weekends every year for children with JIA and their families. Arthur s Place is an online magazine and social network for young adults with arthritis. Information, support and advice for anyone affected by uveitis. A website that provides reliable information about ordinary people s experiences of health and illness. A support network in Scotland for children with arthritis and their families through the provision of factual, practical and emotional support. Arthritis Care offer a helpline, online forum and information for young people with JIA. Arthritis Research UK is a research organisation; one of their long term goals is to develop a cure for arthritis. They provide information about JIA. Follow us... Join us at Follow Join our Health Unlocked online community for parents at healthunlocked.com/jia or Contact us... MBL Helpline: General: e: jia@nras.org.uk w: Ground Floor 4 Switchback Office Park Gardner Road Maidenhead Berkshire SL6 7RJ NRAS is a private company limited by guarantee. Registered in England and Wales No Registered Charity Numbers & SC NRAS_UK healthunlocked.com/nras healthunlocked.com/jia