JIA FAQs for parents & carers

You may notice swollen joint/s, warm joint/s, a new limp, a reluctance to use a limb or even a regression from walking to crawling. Pain is not always a feature and children often adapt movements so it can be difficult to spot. Even many GPs are not aware that it is a diagnosis that should be considered so it may help to raise it with them if you have suspicions.

You may have heard the terms ‘oligoarticular’ or ‘polyarticular’ in relation to your child’s diagnosis. It is easy to get very anxious about which type your child has and what that may mean for them. However, the need to organise children into these groups or subtypes, is more about helping the healthcare professionals know how best to treat your child.

Your child may be classed as ‘oligoarticular’ but have one very troublesome joint which is difficult to settle. Or your child may have multiple joints and be classed as ‘polyarticular’ but these joints respond well to medication. Try not to let it worry you too much because the outcome for each individual child is as unique as they are. It is more important to focus on getting the right treatment plan for the symptoms they have at any time and to focus on their overall quality of life.

JIA can be a hard condition to understand when you are new to it. It can really help to build a good relationship with your child’s rheumatology team and over time you will learn from them what to expect and how to interpret what your child is experiencing. Not all children/young people display swelling when their arthritis is active (flaring). Your child’s team might look at any restriction of movement or muscle wasting.

They will also listen carefully to what you tell them has been happening with your child. They may decide to order a scan (ultrasound or MRI) to help them assess whether there is or has been arthritis. It is important to remember that not all pain, no matter how severe it is, is due to arthritis. Your team are experts in assessing this.

No. A diagnosis of JIA is reached by excluding other conditions, by examining the joints and by listening to a history of the child’s symptoms, behaviours and experiences. Bloods can sometimes show if there is inflammation present and can help as part of diagnosis, but they are not a diagnosis in themselves.

Waiting for a diagnosis can take time, and it’s common to feel frustrated—especially if you are seeing different health professionals along the way.

One of the most helpful things you can do is keep a record of your child’s symptoms. This can help build a clearer picture of how their condition is affecting them, particularly if symptoms are not always visible during appointments.

You could:

• Keep a simple diary of symptoms
• Take photos or short videos (for example, of swelling, stiffness, or how your child is moving)
• Note the time of day, how long symptoms last, and anything that seems to make them better or worse

You may also find it helpful to write down any questions you have, so you feel prepared when you see a health professional.

These practical steps can help ensure your child’s medical team has the information they need to make the right diagnosis and plan next steps.

When you have a child, the last thing you expect to have to do is give them an injection! However, don’t panic because many families we work with felt this way too but quickly become used to this procedure until it feels quite normal!

Talk with your rheumatology team about how you feel. You should always be offered training at the start. There may be alternative options depending where you live – in some areas, the community nursing team will come out to do this for you. Take time to make the right decision for your family about how and where the injections will be done.

Currently there is no ‘cure’ for JIA. Medications, alongside physiotherapy and exercise, are the most important tools you have – these aim to send JIA into remission. Some children and young people will grow out of their JIA and some will spend long periods in remission without symptoms. What scientists do know, is that leaving JIA untreated or trying to treat it with untested substances, can cause damage to joints and eyes.  It is important that you consult your team about anything else you wish to consider, as stopping medication could put your child’s health or eyesight at risk.

Most treatments are very well tolerated by children and young people. It can really help to start any new treatment with a positive outlook and not assume there will be any side effects because many children just don’t experience them at all. If they do develop side effects, act sooner rather than later before any issues have time to build up because these can usually be easily managed with help from your rheumatology team. Options might include taking an injected form rather than tablets or liquid, taking an anti-nausea medication or changing the medication to an alternative.

Several of the medications used to treat JIA require regular blood tests to keep an eye on how the medication is affecting the child. Many children cope surprisingly well with these blood tests. If blood tests are not going well,  you may want to get prepared before your child starts these, we have produced a Tips & Tricks – Blood Test leaflet, by parents for parents, of ideas and suggestions to help you.

The length of treatment for Juvenile Idiopathic Arthritis varies from child to child.

The aim of treatment is to control inflammation as quickly as possible in all affected joints. This often means using several medications at first. Once the arthritis is well controlled, your child’s medical team may gradually reduce or stop some treatments.

Some children will be able to reduce or take a break from medication after a period of good control. Others may need to continue treatment for several years, and sometimes longer.

It’s important to remember that active arthritis can damage joints, and active uveitis can affect the eyes. Because of this, your child’s team may be cautious about reducing treatment unless the condition is very well controlled. Their priority is to protect your child’s long-term joint and eye health.

If your child’s team suggests reducing or stopping medication, it’s a good idea to discuss timing. For example, you may prefer to wait until after important events such as exams or big life changes.

It is important to check with your child’s team if they are being offered a vaccination. They will guide you on which vaccines to give and the best timing, especially if your child is on medication that affects the immune system. Routine vaccines are usually recommended, while some live vaccines may need special planning.

Live vaccines (like MMR, chickenpox/varicella, and some travel vaccines) contain a weakened form of the virus. These may not be recommended if your child is taking certain medications that affect the immune system. Inactivated (or non-live) vaccines are safe for almost all children with JIA. The flu vaccination comes in two forms – a non-live injection and a live nasal spray. Many paediatric rheumatology teams recommend that children with JIA receives the non-live version. Your healthcare team will guide you on which vaccines are appropriate and when to give them, helping your child stay protected while managing JIA safely.

Children with Juvenile Idiopathic Arthritis are usually cared for by a multidisciplinary team (MDT). This means a group of health professionals who work together to support your child’s physical health, emotional wellbeing, and everyday functioning.

The team may include:

• Paediatric rheumatologist – a specialist doctor who diagnoses and treats JIA and monitors disease activity.
• Physiotherapist – helps keep joints and muscles strong and flexible, teaches exercises, and supports movement.
• Occupational therapist – supports your child in school, at home, and during daily activities, recommending adaptations or equipment if needed.
• Podiatrist – provides advice and care for your child’s feet, footwear, and walking, which can be affected by arthritis.
• Ophthalmologist – monitors and treats eye problems, which some forms of JIA can cause.
• Psychologist – offers support for coping with pain, fatigue, emotional challenges, and the social impact of having a chronic condition.

Not every child will see all these professionals, and the exact team will depend on your child’s needs. Your child may also see other specialists if specific issues arise, such as dietitians or social workers.

All members of the MDT work together to create an individualised treatment and support plan, helping your child stay as active, independent, and happy as possible.

15 % of children who have JIA can develop inflammation in the eyes, also called uveitis. Uveitis rarely causes symptoms, especially in younger children, so it is very important that ALL children who are diagnosed with JIA get their eyes checked within the first few months of their arthritis being diagnosed. We have more information about uveitis here, including some videos to watch.

In order to check for uveitis, an optician or ophthalmologist needs to look at your child’s eyes through something called a ‘slit lamp’. Some high street opticians can also do this so in an emergency it is worth asking them.  Some A&E departments, especially in the bigger cities, can also do this so that is another option.

In many services there are joint clinics between the rheumatologist and ophthalmology team. This is to decrease the number of clinics you attend and also help with communication and treatment plans. Ophthalmology teams include an optometrist and/or nurse specialist who may perform the eye screening rather than the ophthalmologist. The eye screen includes an eye test and a big contraption called a slit lamp, which shines the light into the eye from the side and shows up the cells causing inflammation.

Unlike in adults, uveitis in children may go undetected for long periods because it does not cause a red eye or pain and because young children do not know to report subtle changes in their vision. Because of this there are national guidelines about who should have regular eye checks (screening) and how often. In short, most children with JIA under seven years of age are seen every 2 to 3 months for 3 to 4 years and then six monthly. After seven years of age the frequency is every six months and uveitis has never occurred this screening stops at 12 years of age. If there has been uveitis the patient needs eye screening every year into adulthood because it may return without warning although by this age most patients are able to detect floaters or other changes to their sight.

The frequency of eye screening is also influenced by the amount of inflammation present and by changes in treatment. In particular a child may need to be seen more frequently when drugs are reduced or stopped because this may uncover uveitis. These UK guidelines are based on the experience of professionals involved with writing them and differences in experience leads to differences in guidelines between countries.

The first eye screen is critical and should occur quickly after the first rheumatology appointment. 40% of all cases of uveitis are picked up at this time and early treatment is essential to a good outcome.

In the 1950s before screening programs and effective treatment began for uveitis 40% of children lost some degree of vision. On the other hand, this means that without treatment most children do not have significant complications.

Complications arise from prolonged inflammation (often months) and depends on the part of the eye involved. Most forms of uveitis in children affect the front of the eye (in front of the lens). This can cause deposits on the surface of the eye, an abnormal shaped iris because it sticks to the lens and the lens itself can develop scarring called cataracts. With time damage may build up to affect the drainage system of the eye. This may result in too much fluid and a high pressure called glaucoma, or too little fluid and low pressure called hypotony. Both of these complications can threaten the eye, but fortunately are now rare.

In other forms of uveitis the back of the eye or retina may be involved and this situation is called pan-uveitis. Involvement of the retina may also affect vision.

Eyedrops are the mainstay of treatment in all patients and steroid eye drops (Maxidex and Predsol) are used to gain control of active inflammation. In many children uveitis is mild and lasts up to 5 years and in these eye drops is all the treatment that is required.

If steroid eyedrops do not adequately control the active inflammation or the back of the eye is also inflamed steroids may be given by mouth or by injection into the eye socket underneath the eye ball. This is done under a general anaesthetic.

In those with, or at risk of, damage long term treatment is required and in general the same drugs are used as for arthritis. Methotrexate is often used first line and other long-term medication includes mycophenolate and the anti-TNF biologic agents Humira (adalimumab) and Remicaide (infliximab).

Other treatments include tacrolimus, azathioprine, cyclosporin and other biologic agents. Medications that are probably not effective include embrel ( etanercept) and leflunomide. Combinations of medication may be used and each treatment decision is given time to take effect. Your doctor or nurse will explain this when they also work out the benefit and potential for side effects of each drug.

Long-term treatment also helps to reduce the frequency of eyedrops. Regular use of steroid eyedrops, more than two drops per day, can impose on schooling and family routines plus over time steroids can also cause cataract.

Medications used for eye inflammation are only reduced and stopped when the uveitis has been fully controlled and no cells are seen when using the slit lamp. There is no good evidence to say how long eye disease should be treated before reducing long term medication. It is generally recommended that there should be remission (no cells seen) for at least two years or for a total treatment of longer than three years.

In the short term, if the iris becomes sticky or odd shaped, an eye drop called cyclopentolate (or similar) is used to keep the iris fully open. This prevents further damage, but it may cause short-term blurring of vision, and bright lights may be uncomfortable.

Cataracts that build up over time can be easily removed by taking out the affected lens during surgery. This is not technically demanding, but the timing of this surgery is very important. There should be no inflammation at the time of surgery, and medication should be carefully planned beforehand. This is because this surgery may provoke more inflammation and threaten the eye as a whole. A decision is also needed about whether to replace the natural lens with a synthetic one that goes into the eye or with a contact lens on the surface of the eye. This will be explained in detail by your surgeon.

Complications of glaucoma and hypotony are treated with other medications and sometimes other surgical procedures.

For more information, please ask your nurse specialist, doctor or ophthalmologist.

For most children, uveitis is idiopathic. Idiopathic is the term used when we do not know what causes a disorder. More common examples of idiopathic disease include asthma, inflammatory bowel disease or juvenile idiopathic arthritis (JIA). Researchers are currently running projects to try to understand the mechanisms involved in childhood uveitis, which will help us understand the causes and might help us develop better treatments.

Your immune system is your body’s defence team, always on the lookout to fight off infections and heal injuries. Sometimes this defence team gets confused and attacks parts of your own body, like your eye, even when there’s no real threat. This can cause uveitis. One of the key troublemakers in this process is a protein called TNF-alpha. It acts like an alarm, telling your immune system to go into attack mode. When there’s too much TNF-alpha, it keeps the immune system overactive, causing more inflammation in your eye.

Anti-TNF drugs act like blockers or shields that stop TNF-alpha from sending out those “attack” signals. When TNF-alpha is blocked, the inflammation calms down, and your eye can heal. It’s like turning down the volume on an alarm that’s been ringing too loudly for too long. You might get these drugs as an injection under your skin (like Adalimumab) Through an IV drip in a hospital (like Infliximab). While these medicines work really well, they can make it easier to get poorly because they calm down your immune system. So, in short, anti- TNF drugs help control the inflammation in your eye by shutting down the overactive signals, giving your eye a chance to heal.

In a perfect world, we would be able to take tissue and fluid samples from inside a patient’s eye, understand the cell and protein signals that are keeping the uveitis active, and then pick a drug that we knew worked to reduce those particular signals. We don’t do this because it can be dangerous to take tissue and fluid samples from inside an eye with active uveitis, we don’t yet have a fast way to test for the cells and protein signals or to be sure which signals are causing the uveitis activity.

We and others are currently trying to solve this problem using tears to find signals-this would be a safer way to collect fluids although the signals are likely to be much harder to find compared to fluid inside the eye. For now, we select the medications which have the best chances of working for children with uveitis and watch them for a response (which can take several weeks to kick in).

There is no strong evidence on whether a gluten free, dairy free or plant free diet helps but as long as you keep talking to your child’s uveitis team, they will be able to support your choices around your child’s diet. An anti-inflammatory diet can be helpful for some and has benefits for general health.

For most children with uveitis, any vision loss happens in the early part of disease, before they start their oral or injected treatments. About one in five children will have lost some level of vision in one eye by the time they reach adulthood. They usually still have good vision with both eyes open. Only about one in 20 reach adulthood with poor vision in both eyes. This means that most young people with uveitis will enter adulthood with vision good enough to drive legally in most countries. Obviously the sooner effective treatments are started, the better the outcomes for vision. The risk of visual loss is highest with uveitis that affects the back of the eye (panuveitis or posterior uveitis). If you are concerned about vision loss or the type of uveitis your child has, do speak to your team.

Alongside any medications that may have been prescribed by your team. there are several things that you can do at home to help your child. These include using heat/cold packs (some children prefer one over the other), keeping them active every day, encouraging them to pace themselves if they are already very active, giving them a warm bath or shower if they are feeling stiff.

It is important not to panic! You may well be able to manage the flare at home for a few days with the methods above as well as any pain medication they have been prescribed. If the flare does not settle down again or worsens, then you should contact your rheumatology team. They should have given you information about how/when is best to get hold of them and how quickly they might get back to you.

This is a very commonly asked question! Lots of studies have tried to look at this but none yet has shown that any diet or inclusion/exclusion of any specific foods make a difference to arthritis. So our best advice is that all children and young people, including those with JIA, should aim for a healthy balanced diet. One thing we do know, is that there are so many benefits to fish oil that an extra portion of oily fish regularly in a child’s diet may have all round benefits, including on their immune system.

It is important to remember that JIA is just one aspect of your child’s life. It does not define who they are and when it is well controlled, it should not prevent them from doing everything that they would like to do with their life. We have produced two downloads which explain JIA in very simple terms. Depending on the age of your child, you can decide which one is more suitable for them. If your child is diagnosed at a fairly young age, you may find that you have to ‘re-explain’ JIA to them as they get older. Don’t forget that it is important to take the time to explain JIA to your child’s siblings if they have any. Siblings can often feel left out, and it is easy to overlook that they may have questions too.

What is JIA for Children

What is JIA for Parents & Carers

The good news is that even when your child’s arthritis is active, they will not cause themselves any damage by remaining active. In fact, it is better for them to be as active as possible to avoid their joints stiffening up. Children may need to pace themselves (and you may like to talk to school about this) but there is no reason for them not to join in with as much of the PE/exercise as possible. Children may also take a little longer to get moving in the morning so again it is worth considering the timing of any exercise and addressing this with school too.

We have produced a template for a healthcare plan for JIA which you can use as a starting point for a discussion/meeting with your child’s school/nursery or college. This is fully downloadable and you can change it to suit your child’s needs. It contains lots of tips and ideas that have helped other families that you may wish to consider. As a starting point, it might be useful to request a meeting with your child’s school at the start of each academic year. You can also make them aware that, due to the variable nature of JIA, you may need to revisit the plan if things change.

Healthcare template: Individual Healthcare Plan

Web link to further information: Individual Healthcare information

Parents and carers often go through a range of emotions during the period leading up to their child’s diagnosis. You may experience more of this along the course of your child’s journey with JIA especially if things don’t go so well for a while. This is not surprising as it can be a shock – JIA is not something that you have asked to happen in your family! It is probably something you never considered as a possibility before now.

It can be difficult to cope with such an unpredictable condition and one that you may never have heard of before now. Rest assured that all the emotions that you are going through are very normal and you will feel calmer and better able to cope as time goes on and you become more used to JIA as a family.

Take time to be kind to yourself and try and fit in some things that feel ‘normal’ every day so that you don’t spend all your time thinking about JIA. Try not to use ‘google’ – turn instead to trusted sources of information such as those signposted on our website.

Consider reaching out to some other parents/carers on your local area group or arrange to meet one or two of them for a coffee – it can really help to talk (in real life or virtually) to others who ‘get it’ and who have been where you are.

Children taking medications for Juvenile Idiopathic Arthritis (JIA), including DMARDS, biologics and JAK inhibitors, may be more sensitive to the sun or have a slightly increased risk of skin problems.

Parents should:

• Use high-factor sunscreen (SPF 30 or higher)
• Encourage hats and protective clothing
• Avoid strong sun, especially midday (11am–3pm)
• Check their child’s skin regularly for any new or changing moles or marks

Sun exposure doesn’t need to be avoided completely, but extra care is important while on these medications.

Scientists believe that the causes of JIA are partly environmental and partly genetic. But some children develop JIA without having any other autoimmune diseases in the family. Parents often look to blame themselves, but JIA is NOT caused by anything you may have done or not done.

Some parents feel that an illness or injury the child experienced was the cause of their child’s JIA. It may well be that the injury or illness was the trigger that caused the JIA to ‘awake’ but in reality, the JIA was there all the time and so the injury or illness was not the true cause. The main thing to remember is that now your child has a diagnosis, you are in a stronger place to treat their condition.

What you do now in terms of helping them manage their condition is more important than anything that has gone before.

Around 1 in 1,000 children have JIA in the UK. Because treatments are so effective nowadays however, it can be hard to know that someone has JIA and so you may not realise that others living near you may be dealing with the same.

CCAA is a small volunteer-led charity, and all our volunteers have a personal connection to JIA, so we understand how you may be feeling, and we are here to help. Rest assured that we have a wide range of information and support available to you both on this website and in person. We can help you with aspects relating to school, benefits, tips and tricks from other parents as well as much more. Take time to read through the various topics on our pages, but don’t feel you have to take it all in at once, as it can feel overwhelming.

We understand how important it is to connect to others who are going along a similar journey with their child or young person. We have local area support groups to help you make local connections to other families living near you. These run on Facebook, and some of them have in-person meetups too. Every year, we run two residential family activity weekends and a summer picnic event. Lots of families have made friends for life through these events!

If there is anything else you would like to know that you cannot find here, please don’t hesitate to get in touch with us. We are also happy to signpost you to other sources of support from other charities we work alongside, if this is relevant.

Modern medicine has made great progress in finding treatment options for JIA – this means that the vast majority of children with JIA can live a full and active life with JIA. Many children do incredibly well and go on to achieve amazing feats in sport, academia and all walks of life. While it might take some time to get it managed at the start and there may be a few ups and downs along the way, there is every reason to be positive once treatment is established and the condition is brought under control.

About 40% of children are likely to grow out of their JIA. However not all children will be affected all the time even if they do not grow out of it. Typically, JIA involves times when the arthritis is active and then longer stretches of time when the JIA is fully controlled either with or without medication.

• Inform school of diagnosis in writing
• Give them information about JIA
• Arrange meeting with Class Teacher and/or SENCO (Special Educational Needs Co-Ordinator)
• Discuss how JIA and the treatments may affect child’s education
• Ask to see the schools Medical Conditions Policy
• Send any updated medical letters/reports into school

• A written plan to detail what care a child needs in school.
• Detail the impact the health condition and/or medication may have
  on a child’s learning.
• Drawn up with parents and school, reviewed annually or if there is a
  change in condition.
• Individual Healthcare Plan Template
• Healthcare template in Welsh: Cynllun Iechyd Unigol (CIU)

• Fill in a checklist of how JIA could affect school life
• Regular meetings with class teacher and/or SENCO to put an Individual Healthcare Plan in place – termly
• Discuss any other issues e.g. visits to school by OT/Physio if required, attendance, bullying, trips, mental health issues – Child and Adolescent Mental Health Services (CAMHS), movement around the school, PE/sports
• Arrange extra time and/or rest breaks for exams if required
• Inform Teachers and Pupils about JIA, e.g. fundraising event, a talk to the class 

• Arrange meeting with next teacher/school including SENCO
• Make sure that a copy of the Individual Healthcare Plan is discussed and passed on.
• Do not assume information will automatically passed on. Always make sure you are ready to tell the schools exactly what your child requires at school

• Schools have set targets for attendance that are monitored regularly by the local authority and OFSTED.
• Ask to see the school attendance policy.
• Discuss with the Head/SENCO about any attendance concerns
• Can children attend ‘Virtual’ lessons?
• Attendance Factsheet – designed to help you in conversations with your child’s school related to attendance and attendance reward schemes.