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.

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 and there is some specialist family support on issues relating to uveitis if you need it from our friends at the charity ‘Olivia’s Vision’.

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.

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 however or you want to get prepared before your child starts these, we have produced a tips and tricks leaflet, by parents for parents, of ideas and suggestions to help you.

At CCAA we can offer you a wealth of information from the items we have selected here for you on our newly diagnosed family information page, to more detailed information on our other pages. We have local area support groups to help you make local connections to other families living near you and we run two residential family activity weekends each year.

We can help you with aspects relating to school, benefits, tips and tricks from other parents as well as many more. 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.

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.

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 he/she has any. Siblings can often feel left out and it is easy to overlook that they may have questions too.

What is JIA for Parents/carers

What is JIA for children

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.

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 as you can see from our stories page (link) 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.