Just because you have JIA does not mean it is the end of your life, sure a few things may have to change, in the way you do things and you may not be able to do the things that you once did, but it certainly does not mean you should give up living.

Where one door closes, many doors will open for you.

I know of a young girl who was also diagnosed with JIA at the age of 15 and now at the age of 25 is apparently not able to work or lead a normal life, once I heard about this I begun to ask questions… “Was she encouraged to get out into the workforce?” “Was she just allowed to laze around and let everyone do everything for her”, in this case sadly the answer was she was not encouraged to get out into the workforce and yes she was allowed to laze around and have everyone do everything for her.

Sadly many parents see their child in pain and I as a mother do want to do everything in my power to make sure my daughter is comfortable etc, but if this is taken too far, we risk hindering our children for the future.

We need to be their backbone when they dont want to face the world. We need to be their encouragement and their hope when all they can see is darkness, because if we allow them to lock themselves away, and hide away from their problems then they will always feel helpless and unable to do things on their own.

My daughter was an avid soccer player before she was diagnosed, and yes it was hard for her to give it up, but she didnt give it up completely, she finds when she is well that she loves going outside and kicking the ball around with her friends, and she always now knows her limits.

So instead of playing soccer, she was encouraged to find something else she would like to do to, and with the help of an art teacher at school she found a new passion in photography. She doesnt know whether this is something she will want to do long term, but in the meantime if it is something that gives her something to look forward to then so be it.

She is also going for her first job interview today, she has explained to the company of her illness and I can only hope that they do not discrimminate against her for it, and if they do, then a new door will open for her, as long as she keeps looking.

Basically what I am trying to say is that because you have JIA or your child has JIA it is certainly not a death sentence, it is certainly not something that is going to stop living their lives.

At the end of hardship comes ease.

With hope anything is possible

Due to increased family pressures I decided to look more into my daughters treatment and condition. I was not happy with the treatment she had been receiving at the children’s hospital so I decided to take a whole new approach. The reasons I was not happy with the hospital is because last year around this time my daughter woke up unable to get out of bed, unable to stand, unable to even hold a mobile phone or pen in her hand. This morning I dont I will ever forget. She had come to me early in the morning saying she was not well enough to go to school, and I told her it was ok and I will be in soon to check on her. I went into her room and found she was very cold so I put some more blankets on her and needed to leave to take my other children to school.

When I returned home I opened the door to the most horrifc screams a mother can ever hear. I ran to her room to find out what was going on, which is when I found she was unable to get out of bed etc as I mentioned above. I called an ambulance as I was unable to physcially get her to the car and she was taken to the local hospital.

The Drs there did not know how to deal with a child with JIA, they asked the names of her specialists and it was decided that in the morning she would be transfered to the childrens hospital. The morning came and the transfer was cancelled. The Drs at the childrens hospital did not believe she required admission to the hospital. A few days later she was discharged from the local hospital.

A week later we had an appointment with the childrens hospital where the specialist informed me that if I had not been able to physically get her to the car and bring her to the childrens hospital then I “should have tied her to the roof of my car and bring her into the hospital”.

I could not believe this is what the drs had told me…. no sense of concern, no sense of feeling and no sense that this words would be the beginning of the end of the journey for my daughter in their hospital or under their care.

I began looking for a new Dr, which believe me was not an easy task. There are not too many paediatric rheumatologists around.. that were not associated with the childrens hospital.

My daughter had been placed onto methotrexate, and no one informed me that this medication was a non cancerous chemotherapy. I had  no idea of any side effects, I had no idea of any special precautions I needed to make…. that was until she was admitted to have her appendix removed.

I eventually found a new Dr and made an appointment to see him, which when he finally examined her, realised the childrens hospital had missed giving her a medication… her medications were reviewed and a prescription was given to another medication.

She is still currently on methotrexate, planquenil, folic acid, Iron & celebrex.

Since then we have had some good periods and many bad, the winter months are hard for my daughter, especially for school and this year seen where my daughter actually came out and asked if she could leave school. She has missed close to a term and when she was going to go back managed to fall down a flight and stairs and damage her ankle.

Hopefully in the new term, she will be able to go back to school.

Until then, and until I can find some more time to write I will.

First sign of symptoms: July/August 2006

Our Story

My now 14 year old daughter first started to show signs of a problem with her joints when she was 6. She had a sore hip which often led her to cry for many hours in pain. I had taken her to the Dr’s but no one at this stage at picked up that it could be arthritis. After this initial episode she seemed ok, development was normal and she was growing into a very active young lady.

6 months after my daughter turned 11 she began having problems with her fingers, small nodules were coming up on her fingers and to move them was painful. This was followed by a sore right wrist. At first I thought she may have hit her wrist or twisted it, when her wrist did not improve I took her to the Dr thinking she may have sprained it or hit it as kids do. When my local Dr looked at her wrist she suspected that it could be a form rheumatoid arthritis, and without me having any knowledge of this I did not think it was as serious as it ended out being. Xrays and blood tests were ordered. Our Dr also asked us to see a local adult rheumatologist, which comes into the clinic. An appointment was made and we waited a few weeks to see our local adult rheumatologist.

At the time of the appointment she did inform us that she believes that my daughter has a form of Juvenile arthritis, so she ordered further tests, which included scans and blood tests. Basing her diagnoses on both previous blood results & a full examination my daughter was started on medication. She was placed onto Prednisone and Salazopyrin EN. We were told to go home and research JIA and was offered 2 links as her computer was not allowing anything to be printed. The websites were PRINTO to get information about JIA and also Australian Rheumatology Association for the medication information. As a concerned mother I wanted to get as much information as I could and was saddened to see that there were not as much information for JIA as there was for adult arthritis.

I was however able to find a few support groups for parents with children with JIA and it was from these few support groups I began to understand the disease alot better. However the one article I did read that allowed me to try and understand what my daughter was going through was one called “Meet Arthur” . I believe this should be handed out to all the parents who have a child who has been diagnosed with any form of juvenile arthritis.

When my daughter was first diagnosed it was a very scray time not only for my daughter but also for us, her family, her mum, her dad, her siblings and cousins & friends. They found it hard to understand why it is that she cannot do all the things that she wanted to do. Why cant she play the same games with us etc.

I was sick of the blame game, being told continuously that it was my fault she had JIA, I must have done something wrong when she was a baby, how I should have noticed the signs sooner.. There was just too much blame being placed down on my shoulders.

I went looking online for ways to be able to answer their questions and to try to ease their confusion. I found that reading “Meet Arthur” allowed family members and friends to atleast get some sort of understanding of what it is my daughter is going through.

After our first few visits with the adult rheumatologist she suggested that we had better make an appointment to see the specialists at Westmead Childrens Hospital as she was not a pediatric rheumatologist and she would be more comfortable with my daughter being seen by a pediatric Specialist. We made an appointment, which unfortunatly was not for another 6months.

The hardest part of the waiting was watching my daughters condition deteriorate, she had gone from having one sore wrist to loosing range and strength in her wrist and to having more joints involved. We had gone from one wrist to almost all joint involvement.

During this waiting time she continued to see the adult Rheumatologist {that is when she turned up for her appointments}, she had an allergic reaction to the salazopyrin EN { which the specialist wanted to try again, which I refused} and she was then put onto methotrexate (which I did not find out until 2009 that Methotrexate was in fact a low dose chemotherapy.) I wish I had been better informed by the Dr and not just sent to websites or forced to research things on my own, or wait for close to 2 years later to be informed by a nurse at a hospital that it was in fact low dose chemo.

Westmead childrens Hospital

The day had finally arrived where we were able to get in to see Dr Chaitow at Westmead. We had our initial appointments, where all the blood results, xrays etc which had already been done were presented, this method I believe saved us alot of time and less stress for my daughter not having to start all the tests again. I would suggest that anyone who is in the process of waiting, be well prepared when they attend the hospital.

As soon as we were seen and the diagnoses was confirmed the wheels started turning. Occupational therapy was organised, schools were contacted and we actually had a plan to where and what we were going to do. This was a great weight off our shoulders as we just wanted our daughter to be out of pain, to be able to do the things that she wanted to do, to begin living her life again.

I must say, I have been very impressed with the treatment that my daughter has recieved at Westmead childrens hospital. My daughter has been treated by the rhuematology staff at Westmead for atleast the last 2 years and during this time she has been able to feel comfortable with the Drs. She has had a joint injections in both wrists and the process of this was very well explained. She has taken part in studies to help children in the future and to be able to compare the differences between children with JIA and children without JIA.

Suggestions for the Childrens Hospital

However the waiting time is something that does need to be addressed, not only when you initially want to see a specialist but also during the clinic times. It is hard for a child with arthritis to sit for long periods of time, especially when they are in a flare up. There is limited seating and the waiting room fills up very quickly when there are so many clinics ran on the same day.

One factor that is not usually discussed is the emotional impact that JIA can have on a child. To be able to go from being actively involved in sport to not being able to even use a tap, open your own drink bottle or even dress yourself is devastating for a young teen. To be forced to explain to your peers at school what is going on, being taunted and teased. One incident I will relate is my daughters school had offered for her to use a laptop as she was unable to write at this stage. Her fellow peers kept saying to my daughter” Your so lucky”, it was not until a while later that my daughter actually confided in me and said to me ” I dont know why they say I am lucky, I have to live in pain, all I want is to be normal”. My daughter feel into depression and I would often find her alone crying in her room. As a parent this is hard especially when you dont know where or who to turn to. Parents need to be made aware that depression is one side of JIA that they need to look out for, and where and who they can turn to if they find themselves in need.

School

I have briefly mentioned schooling but I would like to the chance to expand on this topic. School is another factor that is greatly impacted on a child with JIA. Not only missing days but sometimes weeks from school as the pain is just so severe they cannot attend. Catching up on missed school work, teachers not understanding the impact JIA has on a child. As many times the child does not look unwell. She may come to school looking fine but have sore joints, she may be fine one minute and in pain the next.

Writing can be a problem if the child is affected in the hands or wrists, and many times the child is “sick of telling the teachers” they are unable to do things. Another incident which my daughter has just reminded me of was a time when were joints were really bad and she was unable to play sport. She informed the substitute teacher that she was unable to play as she had arthritis and her joints were very sore, so he made her sit out and write lines, even though her wrist and joints in her right hand were badly inflammed. When she explained that she couldnt write either, he said “well where is the letter from your parents” This is unfair considering the school is aware of her condition and I dont believe she should be made to feel as though she had done something wrong simply because of a medical condition.

Another issue at school is the lack of knowledge that is out there for teachers and peers. I did have to provide with school with print outs of information about JIA. They were not able to comprehend how it affects her daily life.

I needed to make special requests for extra time for when she needs to change her clothes for sport, for extra time to move between classes, but in doing this it also isolated my daughter from the rest of her peers, as they seen it as she was getting extra privileges.

Many teachers did not understand and at time made life for my daughter very hard. Comments were thrown at her for using a laptop such as ” How am I supposed to mark your laptop” and there were certain things that just could not be done on the laptop which meant either my daughter did them as required and suffered in silence or missed out which meant she lost marks. Catching up on missed work was a hard for her as well.

My daughter found it hard to explain to teachers what was wrong with her.

Suggestions for schools

Once a school is aware there is a child that has JIA an education day should be held with a representitive from the arthritis association so the teachers can be made aware of the impact it can have on a child.
There should be some sort of card that a child carries with them that can be shown to the teachers. It would save the child actually having to stand there in front of their peers and explain they have a medical condition.
The education that the teachers receive should be passed onto the students, without isolating the child involved so that they too have a better understanding of children with disabilities. Children can be cruel, and the last thing a child with JIA or any disablilty needs is to be isolated and have their peers snickering, thinking they are “lucky” and basically not understanding.

Positive elements

* Follow ups with bloods
* Options are given before anything is done
* Friendly staff, including the Doctors & occupational therapy staff.
* Occupational therapy staff were amazing, offering support, contacting the school and helping me speak to the school and organise things to make life easier for my daughter at school

General Suggestions

* Greater education for parents and carers.
* Resources need to be made available for parents and carers
* General practioners, general hospitals and emergency staff need to be educated on what to do when a child presents with arthritic symptoms.
( My daughter was just released from hospital after suffering a severe flare, which left her unable to stand up & walk. The hospital Dr’s and nurses were “shocked” to see that a child was able to get arthritis. They did not know how to treat her, they did not have any pediatric Dr’s who knew anything about rheumatology. They had suggested transferring her to Westmead for treatment, but the Dr’s at Westmead were unavailable at the time. They did not know what to look for, they did not know what to do or how to treat her so they contacted her specialists at Westmead. They did not know how to recognise an arthritis flare in a child)

* Emergency services need to be allowed to take a child to the hospital of the parents choice, where the childrens specialists are located.
* Again a card needs to be produced that can be presented to medical staff of the condition and medication the child is on. This card would stop the questions ” are you sure she has arthritis”
* Greater financial assistance for parents to be able to buy aids/laptop to help their children around the home.
* Better websites, that are easy to find for parents looking for information.
* Information that is easier to understand for parents/carers/family that do not understand medical terminology.
* Information must be made available in many different languages
* Information must be made available for ALL schools.

This information sheet suggests ideas about how to find support.

Ideas about where to find support

• Family members, particularly your parents and siblings. Even if they are not physically able to offer practical help, their emotional support is invaluable.

• Friends can offer both practical and emotional support (see below for ideas).

• Your child’s health care team, especially your doctor, rheumatology nurse or psychologist can help with information, advice and support.

• The parents of your child’s friends may be able to look after them for an afternoon so you can do other things.

• Support organisations like Arthritis Victoria can help with information, advice, courses, parent support groups, family social days and camps.
• Family Support agencies and Community Health Centres can help with in-home parenting support, parent support groups, or counselling.

• Your church or cultural group may offer both practical and social support.

What to do if you are having problems getting enough support

Some families feel they are not able to ask relatives for help, or have not received support even after asking.

This can happen for many reasons, but can result in families feeling lonely and isolated. If this is the case for you, it is especially important to develop a network of friends, neighbours and professional helpers.

However, it is also important to ask yourself if you have really asked for the support you need. Often, relatives and friends do not realise the huge pressures of caring for a child with JIA. Alternately, people may
not know how to help.

It is OK to ask for help; in fact it is essential to the wellbeing of you and your family!

Ask yourself:

• Have you explained what the difficulties are and what support you need?

• Perhaps you have explained, but you ‘spared’ them from the worst aspects, meaning that they still don’t understand that you need help.

• Even if they do understand, have you given them the impression that you are coping fine and do not need help?

Make a time to talk with key people who could support you, and explain as clearly as you can that you and your family would appreciate any support they could offer. Be prepared with ideas about specific things they could do to help.

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Treatment for JIA might include:

• medications to control the inflammation
• exercises to keeping the joints moving well
• splints to support the joints
• joint injections to reduce inflammation in particular joints
• pain management strategies to reduce pain and to help you cope with pain.

You will need treatment for as long as the JIA continues. Treatment may change as the JIA changes over time, but treatment is only stopped completely when the symptoms have been gone for quite a while.

Your treatment may involve a few different professionals. They are called your treatment team.

Who is my treatment team?

You and Your Parents

You and your parents are the most important people in the treatment team. Your team will work together to help you manage your JIA. You should ask about the treatments and how they work, so you can use them properly and help your team to help you.

Paediatric Rheumatologist

Paediatric rheumatologists are doctors who look after children with arthritis.

Rheumatology Nurse

Rheumatology nurses provide education, support and coordinate your treatment.

Physiotherapist (Physio)

Physiotherapists are experts in how joints and muscles work. They might give you exercises to help keep joints moving well, and to keep you strong.

Occupational Therapist (OT)

Occupational Therapists can give you splints for supporting joints and provide other aids to help you with everyday activities like getting dressed or writing.

Ophthalmologist

Ophthalmologists are doctors who specialise in eye problems.

Psychologist / Psychiatrist / Counsellor

Psychologists and psychiatrists help kids and families manage feelings about JIA, and can also help you learn to manage pain.

General Practitioner (GP)

Your GP looks after your general health. Contact your GP if you have any health concerns other than joint problems.

Pharmacist

Pharmacists dispense your medication at the chemist.

Teachers

Your teachers need to know about your condition and its treatments so they can help you at school. Your nurse educator can talk to your school if you ask for this.

Support Groups

It can be great to meet other kids with JIA. They understand what it’s like. Local arthritis foundations often have fun activity days and camps for kids with JIA.

Meeting other families who have a child with JIA can be a valuable experience for your whole family. It can help to share ideas and experiences with other families in the same situation. Local Arthritis Foundations often run support groups for parents and activities for families.

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Oligoarthritis

A doctor may diagnose oligoarthritis, or pauciarticular arthritis, if four or fewer joints are affected, and it is most frequently seen in children aged about two or three years, but also in adolescents. It is more common in the larger joints, like the knees, ankles or elbows, but can also affect wrists, fingers and toes. Often a particular joint will be affected on one side of the body only. If a child has this form of JIA they are at risk of an eye inflammation called iridocyclitis, particularly if blood tests are positive for ANA. Iridocyclitis should be monitored regularly by an appropriate eye specialist, as there are no signs of redness or discomfit even when it is present. Untreated it can cause considerable damage, however most children do well when treated with eye drops. A child with this form of JIA often does well, and in most cases the arthritis disappears after a number of years. A range of treatments are aimed at minimising damage in the affected joints, and good management will often give a good long term outlook for the childs future.

Polyarticular Arthritis

Polyarticular means “many joints”. Five or more joints are affected, often in the small joints of the fingers and hands, and often those joints are affected on both sides of the body. Polyarticular JIA can also affect knees, hips, ankles, feet, shoulders, neck and jaw, and they may experience at times a low-grade fever and tiredness. A small number of children have positive rheumatoid factor in the blood, which may result in a more severe form of arthritis. Many children will recover from the polyarticular arthritis without significant ongoing effects. For some the disease will continue into adulthood, but good management can go along way towards minimising the impact of arthritis on education and career choices.

Systemic Arthritis

This form of arthritis is the least common form of JIA. As well as sore joints the child usually has fever and rash, aching limbs, and feels tired and listless. This condition may also affect the heart, lungs, liver, spleen, and lymph nodes, and anaemia and weight loss may occur. The joint-related symptoms may continue after the other symptoms have settled down. Many children with systemic JIA recover after months or possibly a year (depending on relapses), with minimal changes in joints. For others the condition will be more prolonged and recurrent, with ongoing joint problems. Good management of the fever and joint inflammation will often enable a fairly normal life to be led and minimise problems into adulthood.

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Joints are where two bones are connected. The ends of the bones have a smooth covering called cartilage. A joint is in a kind of bag called a capsule. The inside of the bag has a special lining (synovial membrane) that makes a fluid. The fluid lets the bones move easily – like oil on your bike chain. It also protects the joint.

In arthritis, the lining of the joint becomes inflamed and thicker than normal, the capsule fills up with inflammatory cells, and the amount of synovial fluid increases. This is what makes joints swollen, stiff, hot and sore. If the inflammation is not treated, it can damage the joint, the cartilage and the surrounding bone. Muscles around the joint can become weak and the joint may not be able to move as much as usual.

On the left is a joint without arthritis. The middle knee shows an inflamed joint and the one to the right shows a joint with untreated arthritis

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• swelling
• pain
• stiffness (especially in the morning)
• heat or warmth.

You may not have all of these symptoms in every joint that is inflamed. Sometimes the eyes can also be inflamed which is called “uveitis” (more about this later).
Other much less common symptoms of JIA can be:

• fever
• rash
• loss of appetite
• loss of weight.

How common is JIA?

JIA affects at least one young person in every 1,000 in Australia. There are at least 5,000 young people in Australia with JIA.

What causes JIA?

Your body has an immune system which fights germs from outside the body to keep you healthy. Sometimes the body’s immune system mistakes a normal part of the body for something foreign (like a germ), and starts attacking the body itself. In JIA the immune system attacks the joints. This is called an auto-immune process. We don’t understand exactly how or why this happens.

Things that do not cause JIA

• You didn’t catch JIA from someone else (and you can’t give JIA to another person)
• There is nothing that anyone did or didn’t do that caused your JIA
• JIA is not caused by being too cold or living in a cold place
• JIA is not caused by eating particular foods
• You didn’t get JIA from your parents (it is not hereditary).

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This is about Juvenile Idiopathic Arthritis. What causes it? How is it treated? What does it mean for you?

Juvenile Idiopathic Arthritis (JIA)

Juvenile Idiopathic Arthritis (JIA) is arthritis that young people get.

• Juvenile means young people
• Idiopathic means that we don’t know what the cause is
• Arthritis is when a joint swells up, is stiff and hurts (gets inflamed).

JIA is a chronic condition

• Chronic means it lasts for a while – more than 6 weeks
• Chronic also means that treatment will make you feel better but won’t cure JIA.

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