> The Beesley Buzz: Juvenile Idiopathic Arthritis (JIA)

Juvenile Idiopathic Arthritis (JIA)


Our beloved daughter, Miss T, has Juvenile Idiopathic Arthritis (JIA). She was diagnosed when she was 2 years old, after a stressful but mercifully fairly short few months of severe pain, discomfort and stiffness. You can read about those first few months here, and follow her journey through our blogposts.

We are not experts in Juvenile Idiopathic Arthritis. But we are parents of a special little girl who happens to suffer from it. Over the past few years we have been learning a huge amount, and have created a few resources that have helped us to keep track of things. One of the things we have found is that whilst there is a lot of information about JIA, it is often tucked away and can be hard to find. And in those early days straight after diagnosis, there was just too much to try to take it all in anyway.

We've created this page as somewhere to give a summary of information about JIA - and the really key things to look out for and keep monitoring - and a link to our free JIA resources. If you have a loved one diagnosed with JIA (or any other condition for which these resources may be useful), please do feel free to use these. We do ask that, if you share these, you keep our details on them so people can find the originals and any updates more easily.

Remember this is not medical advice. This is our personal journey. Contact your doctor for advice.

My child has been diagnosed with Juvenile Idiopathic Arthritis - what do I need to do now?

First of all, do not panic. Our experience was that we were hit with a huge amount of information, lots of facts, and scary details in the first few days after diagnosis and it was hard to take it all in.

By the time you have a diagnosis, you will probably be under the care of a large specialist hospital. Miss T is a patient at Great Ormond Street Hospital in London and they have been fantastic. The fact that Juvenile Idiopathic Arthritis is relatively rare has it's downside - your local hospital is unlikely to have seen enough cases to be able to offer the level of information and care your child's specific JIA needs. Miss T is also jointly cared for by our local hospital, where she has regular blood tests and has to visit in case of infection - they have also been excellent in providing care for her, supported by Great Ormond Street. Remember that your doctors, consultants, specialists will be able to answer your specific questions.

First things first...

Your child is just the same as they were before the diagnosis. They have great prospects and with support and medication should be able to live life to the full. But you do need to check a few things right now.

  1. Is your child up-to-date with their vaccinations? If not, treatment for the JIA may be put on hold until they have them. This is because the treatment of choice (in Miss T's case it is Methotrexate) reduces the immune system - so it is important to have vaccinations before treatment so they are protected from nastier bugs. In some cases your child's medical team may start treatment straight away anyway if they feel a wait would not be in your child's best interests, or if the vaccinations are not due for a while - do talk to them if you are unsure.
  2. Has your child had chickenpox? Again, this is because the treatment for JIA reduces the immune response. If they have had chicken pox, they should have a level of immunity already (your hospital can check with a blood test). If they have not, then there are two options - delay JIA treatment until they have chickenpox vaccinations, or start JIA treatment now and be aware of the risk of chickenpox. For Miss T, we went with the latter as she could not have that long a delay before JIA treatment. If you are in the same position, read about the importance of chickenpox below.
  3. Get your child's eyes checked right now for uveitis. The hospital may have already arranged this - but if they haven't, call them now and get it sorted. Miss T did have uveitis - a common complication of JIA - and had to have treatment straight away. If caught early, it can be put right (Miss T had eye drops and steroids and it cleared up quickly and now the methotrexate keeps it under control) but can lead to blindness if left unchecked for too long.

Next up...

Your child is STILL the same as they were before diagnosis. But you might need to be a bit more organised for a few of their needs from here on. Our free resources, at the end of this page, might help you to keep track of medications, treatments and other things to keep an eye on. Here are a few things to remember once your child starts JIA treatment - Miss T is on Methotrexate, so that is what we are focusing on here.
  1. Methotrexate works by reducing the immune system. That reduces the damage being done by the JIA and halts damage to the bones. As a result, Miss T is now more mobile and has less pain than she did before treatment. But - as it reduces the immune system, you do have to be careful of infections, bugs and other nasties.
  2. Chickenpox is not good. Whilst chickenpox is usually quite mild, for people with a lowered immune response it can lead to some nasty complications. If your child has not had chickenpox, you will need to make sure their school/pre-school/club is made aware. They will need to tell you if your child comes into close contact with anyone with chickenpox. (We were advised that 'close contact' means spending 15minutes in the same room as someone with chickenpox, or they go on to develop chickenpox spots shortly afterwards). When that happens, you will need to get your child to your local hospital to have an injection of Zoster Immune Globulin to give a boost to the immune response. I warn you now - this does hurt. But it is better than the complications of chickenpox. This has to be given within 72 hours of exposure to the virus. If you cannot get it in that time (for example if you don't get told about the chickenpox) then you have to wait it out. If your child does not come out in spots, great. But if they do, it's back to the hospital for a different treatment (aciclovir antiviral) to help reduce the impact of the virus.
  3. Flu is not good. Your child, and their immediate family, will need to have a flu jab each autumn. These are currently free on the NHS from your GP practice. They must be the jab, as this contains the dead virus - not the nasal spray which contains a live virus. It must also be given before the schools and colleges start their immunisation series (of nasal sprays).
  4. Infection is not good. Whenever Miss T gets a high temperature, we start recording it. We use an in-the-ear thermometer and keep a close eye on her fever. If it stays high for 48-72 hours, she has to go straight to the hospital. Here she normally has a blood test and, if there is an infection, starts a course of antibiotics. Because of her weakened immune system, the antibiotics are really important to give her body a chance to fight the bugs. At this point, DO NOT LISTEN TO YOUR GP if they say your child is 'fine' unless they have done a blood test and know there is no infection! Miss T was unwell, we were told she was fine as there was nothing the doctor could hear through their stethoscope, but it turned out to be a chest infection and did need antibiotics to clear up.

Tests and checks

Living with Juvenile Idiopathic Arthritis does mean being organised in terms of administering medication and having tests and checkups. Here are a few key ones that you need to keep an eye on:

1. Blood tests
Your child will need to have these every 6 weeks or so (initially they may be more regularly - we started at two-week intervals until the doctors were confident it could be extended) to keep an eye on the Methotrexate. It can have an effect on liver function, so you will need to ask for the ALT to be measured (an indicator of liver function). Your doctor should tell you what a normal, healthy, range is and when to be concerned. If it does creep up, indicating some reduction in liver function, you will be told to stop giving Methotrexate for a week or two to let the liver recover. But do not forget to have the blood tests - it is unlikely that anyone will remind you, so stick them in your diary!

2. Eye checkups
You need to keep an eye (sorry!) on any potential uveitis. It can develop, so you need to visit your specialist orthoptist. This won't need to be very often, all being well, but it is important.

3. Your consultant
Your child will be booked with a specialist consultant at your lead hospital. In Miss T's case these are every 6 months or so, and she sees her consultant at the local hospital every 6 months or so (so she sees someone every 3-4 months). This is to keep an eye on the JIA in general and make sure the treatments are all working. If appointments don't come through, do chase them - your doctors are busy and nobody else will remember to chase up the booking.

4. Podiatrist
If your child has JIA affecting their legs (Miss T's primary problem was her foot and knee), then you may need to be referred to a podiatrist. They will help with shoe insoles, raises (which are fixed to the bottom of a shoe) to help with walking and gait.

5. Physiotherapists
Miss T has regular appointments with her physiotherapy team, too. They have set her a whole load of exercises to do, which help with her mobility and develop strength in her worst-affected joints. They take ages to do each night, but we've renamed all the exercises (to the more interesting 'pushy toes' and 'sleepy toes' from the complicated physio-terms) and made them a game. As a result she has done really well and made good progress. If you are given exercises to do... make sure you do them! They are hard work, especially to start with, but they really do help.

6. Other specialists
Miss T has seen other people, too. Who your child sees will depend on how their JIA affects them and what needs to be done to help. Your doctor will be able to advise. Remember to keep copies of the letters you get from the different specialists so you have their contact details if you need them again. This will include the community nursing team who will show you how to administer injections, if appropriate.

At times, your child may also need one or more of the following. Our experience has been that if you ask your doctor, or the people administering the tests, what they are for and how they work they will be more than happy to explain. Miss T has had, for example:

1. X-Rays 
Lots of them. This means having to be still, but only for a few moments. You can often be in the room, too, wearing a rather glamorous lead-lined apron (as long as you are not pregnant at the time) - ask the team as it may help keep your child calm and still.

2. Bone scan 
Miss T had one of these. It involves staying still for a short while, and having a mild radioactive tracer injected so the detail of the bones can be seen. As with all our hospital experiences for miss T, the team were really helpful and understanding and knew how to help keep her calm and focused.

3. MRI 
Miss T has had three of these - one under general anaesthetic, one under sedation, and one wide awake. It does involve laying still for 20-40 minutes, hence the need for sedation or anaesthetic to help. On the occasion she was awake, I did get to sit in the room to support her - it is loud and cold in the room, but Miss T did appreciate my presence.



How do you administer Methotrexate?

First of all, we are not going to give all the details here. Your nurse or doctor will demonstrate to you, and they should be the person you call if you are ever not sure. But the key things to remember are:
  1. Complete the checklist. We've produced our own (available as a free resource below) to help us. It is really important to check your child's temperature (as an indication that there are no infections), and blood test results regularly. We also record the batch number for the methotrexate (only because the hospital would, so therefore we do!)
  2. We have found that putting a cold compress on the injection site to cool the skin before the injection helps reduce the pain. It is really important that your child remains calm and relaxed - if they tense, the injection will hurt more - so do everything you need to to help them relax and be distracted from what is coming.
  3. Clean the injection site using the sterilising swab provided.
  4. Administer the methotrexate as you have been shown. We use Metaject auto-injectors, which are really easy, quick and relatively painless. Miss T still tells us they hurt, but they are over in seconds.
  5. Throw the used sharps in the sharps bin, and apply a gauze to the skin. Then you can apply a plaster. Miss T is allergic to plasters so we put a small gauze over the site, then stick it down with a tiny bit of microporous tape - it can be taken off in just a few minutes.
  6. Throw away any gauzes, gloves, used sterilising wipes, update the checklist to confirm you've given the injection, wash your hands because methotrexate is cytotoxic and can damage your skin or their's. 
  7. Most importantly, give your child loads of positive attention. Injections are not pleasant - and they need all the reassurance and support you can give them right now. For Miss T we had a little sticker book she filled in with stickers after each injection or blood test initially.
  8. Every so often your sharps bin will start to get full. You will need to speak to your doctor or hospital about how to get a replacement, and where to dispose of the old one. In our case, we have to take the full one to the hospital and get a fresh one from them, so remember to plan ahead. If you are travelling, you should also take a small sharps bin (if you are taking any injections with you) for while you are away. 
  9. When travelling and taking your medications with you, check local requirements and get a letter from your doctor to confirm the medications are needed. And remember that methotrexate must be carried in your hand-luggage and not in the hold of an aeroplane. Metaject provide further information here.


JIA RESOURCES


What is JIA

The name Juvenile Idiopathic Arthritis (or JIA for short) means...

Juvenile - it is diagnosed when someone is a child or young person

Idiopathic - the exact cause is not known

Arthritis - it is an inflammation of the joints

Juvenile Idiopathic Arthritis is an auto-immune disorder. Whilst the exact trigger is not known, for some reason the body's natural immune defences go wrong and start to attack the joints. This causes inflammation, pain, reduced mobility and discomfort. There is no cure for JIA, but there are a range of treatments. These work by reducing the immune response. This helps stop the arthritis and prevents further damage to the joints and bones.



Resources to help manage Juvenile Idiopathic Arthritis


In our JIA journey we have found the following resources useful - feel free to use them if you would like to. We do ask that, if you share these, you keep our details on them so people can find the originals and any updates more easily.

Medication record sheet (Click to download)

This was particularly useful in the early days, when Miss T had 8 or more different medications to take each week. Now she is using only 3 on a regular basis we tend not to use a sheet but have started to look at apps to remind us. The simplest of these is just using the alarm on your phone and setting it to beep each time you should be administering a medication.

Partially completed version
Blank version for your own use

Pain / stiffness charts (Click to download)

These were really useful whilst we waited for a diagnosis. By printing these out and marking in red pen where Miss T reported pain, or showed signs of stiffness or lack of mobility, it really helped the consultant as she made a diagnosis. The doctor will do a full check of your child, of course, and will ask you loads of questions - and we found that having a record of what had happened, how and when helped us to remember the details.

Methotrexate record sheet (Click to download)

Before giving methotrexate, you need to be sure that your child does not have an infection (by taking their temperature), and that their latest blood test results are ok. We also record the details of the batch (printed on the methotrexate box) just so we have them. This sheet lasts about 6 months. When we first print it out, we fill in the first column - the date we intend to give the methotrexate (normally every Friday). Then, each time we are about to give the injection, we fill in the sheet to confirm Miss T's temperature, latest blood results are ok, batch details, leg to inject (alternate each week if possible). If the checks are all ok, we administer the methotrexate and then sign the sheet.

Blood test result record sheet (Click to download)

We borrowed this from our consultant at Great Ormond Street Hospital. Your hospital will probably give you a similar sheet, but if they do not, feel free to use this. Your doctor will want to know these results - especially to confirm that liver function is all ok - whenever you see them, and having them all in one place really does make that easier.

About Me passport (Click to download)

This is an idea we used years ago to explain to people what they needed to know about our son J. His Asperger's meant he had additional needs that people looking after him (at school or clubs) needed to be aware of. Well, Miss T has additional needs because of her JIA, so we created a sheet about her. This is handy for school, clubs, other people who will look after her as it explains about her JIA and the key things they need to know (such as the risk to Miss T caused by chickenpox). You will need to create your own About Me passport, but this might give some ideas.

Contact details (Click to download)

We found it useful to have a single list with all of Miss T's key contacts on it - Great Ormond Street Hospital, our local hospital, the GP, Physiotherapy etc, along with her hospital number so they can find her on their system quickly. Print this sheet out, fill it in, and keep it somewhere handy for when you need to call them.

Other organisations

There are a number of other organisations out there who may be able to help you in your JIA journey. Here are a few of them. 
Arthritis Foundation, a US-based site.
Great Ormond Street Hospital

Remember this is not medical advice. This is our personal journey. Contact your doctor for advice.

4 comments:

  1. Hi wondered if you were aware of our small charity I am on committee and a jia mum ...we run weekends for jia families
    More info at www.ccaa.org. uk

    ReplyDelete
    Replies
    1. Yes a friend of ours told us about it recently. Thank you :-)

      Delete
  2. Found you via the FB site, great resource, particularly like the blood test form. Maybe one friday we will bump into you at GOSH.

    ReplyDelete
    Replies
    1. glad it may be of use. thanks for stopping by Lisa. x

      Delete

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