“ / Type: Juvenile arthritis „
***This review is based solely on my experiences of JIA from a parents view, I am not a medical professional, i will only say what we were told and how my son's arthritis was handled, whilst there are other forms of arthritis and treatments this is based on the ones used for my son***
In the latter stages of last year my 5 year old son started complaining off pains in his ankles and knees, although at first not sure of the reasons I took him to the local doctors only to be told that he was experiencing 'growing' pains, at first I agreed with this diagnosis and went about properly maintaining these 'pains' with calpol when needed etc.
It wasn't until the august/September of last year that I began to notice swelling and 'hot' patches on said sons knees and ankles, this drove me to the doctors surgery again looking for answers, this time I basically demanded he was seen by a professional who dealt with joints and joint issues. We were duly sent to our local hospital to seen a paediatrician.
During the initial consultation we were informed my son had Hypermobility and maybe Something else, it was not until a few months later when I arranged a semi emergency appointment with the said consultant, after having to help my son out of bed as his knees wouldn't work, that we found out my son had JIA (Juvenile idiopathic arthritis) although it is also referred to as JRA (Juvenile Rheumatoid Arthritis).
Sadly the cause for JIA is unknown but thankfully unlike the adults forms of arthritis it can be fully cured IF caught early enough. It is also the most common.
As with all types of arthritis (adult and juvenile) it is classed as an autoimmune disease.
Symptoms include lethargy, pain, swelling, lack of appetite, flu symptoms and limping, and more dangerous side effect is a form of eye inflammation called 'uveitis' that is quite common with some types of JIA, a simple eye and blood test will determine if it has occurred.
There are three types of JIA
Oligoarticular - 4 or less joints in 6 months
Polyarticular - 5 or more joints in 6 months and
Systemic - most joints, fever and rash.
***MY FAMILIES EXPERIENCE***
My son was diagnosed with Oligoarticular JIA in predominately his ankles and maybe his knee's ( follow up appt to confirm), and although changes were made at home (swimming more often, steps for baths etc) we were soon back as he now could not partipate in'PE' sessions in school.
This leads me on to treatments.........
Most commonly the child will have some sort of physical regime and sometimes hydrotherapy ( as in the case of my son) although some people choose to also use drug treatments such as non steroidal anti- inflammatory drugs and sometime betablockers of a sort.
Sadly my son had to have the most aggressive form of treatment(due to others not working and lenght of time since diagnosis) involving intra-articular corticosteroid injections administered under general anaesthetic into the affected joints. This being a day surgery and taking around 1 hour, which although not alot as a parent seemed like an eternity and the worst thing ever!!!!!
With this over the thing needed is strangely a good exercise and stretching regime to maintain 'bendiness' and make it easier to move etc.
Thankfully the injections seemed to have worked and with a strict regime of swimming (hydrotherapy) and exercise he seems to cope ok but only time will tell, we were lucky it could have been worse and not dealt with quickly.
I hope this has helped in a small way.
When I was nearly seventeen I was attacked by a gang of youths, I was fine but a bit shaken after the attack, a few days later I was really ill, I had a bad kidney infection, and in agony, I carried on with life, and was put on soluble paracetamol as I could not swallow paracetamol at the time. For months I went back and forth to the hospital for test, x-rays and blood tests, after three months, the specialist told me it could be rheumatiod arthritis, but ruled it out as I was apparently too young for it. Three months later after more test( by this time I was crawling everywhere, I even had to sleep downstairs because it was too painful to climb the stairs I was in that much pain, and getting pretty depressed) The doctor called me back in and told me it was what he thought it was, and guess what - Rheumatoid Arthritis,... I have it in my joints.
The doctor told me if it had not have been for the beating I had suffered the Arthritis could have lain unsuspected for a few more years. I was put on painkillers called Naproxen, and in time the pain subsided, and I made a good recovery within a few weeks, and I could walk up the stairs again.
Since then I have had to change the painkillers to Co-Codamol, as a few years back they changed the ingredients which caused a really bad reaction, after the diagnosis I decided that I would not let this get me down and carried on with everyday life and decided to keep an active lifstyle and more importantly keep motivated and persue life to the full, I have bad spells but keep going regardless.
I have four brothers and one sister, a few years after me my oldest brother started having problems with his knees they were swollen and inflamed, and because of past history the doctors tested him for Arthritis,... and he too has it, but I feel sorry for him as he has got the other type of Arthritis which inflames the knees, and so the history repeated itself with my next brother when he was sixteen he too has the same problem with his knees, but he also has it in his spine, then my third brother has Rheumatoid Arthritis the same as me, then comes my sister, nowhere near as bad, but in her spine too, and my little brother also has the problem with his knees.
What you will find with Arthritis is most of the time it is an hereditary problem.
My mum has it really bad now, she find it hard to climb the stairs and getting around is a real struggle for her, she is in agony most days, and on really strong painkillers , and with other health problems, is finding day to day life hard. My Nan also has Arthritis, she has her ups and downs, but she just keeps going.
In cases involving the knees - inflamed knees, swollen redness
In Rheumatoid Arthritis stiff painful joints, pains in fingers or any other part of the joints, sometimes swelling.
My advice is check your family history, if there is no history but you/ your child experience any of the above contact your doctor immediately. And most importantly KEEP ACTIVE.
I don't suppose that this is an opinion that will be of great interest to many people. However, there might be some of you out there who have children who suffer from juvenile arthritis, or be involved in their care or education. With this in mind I offer you this op! Those of you who have read me before will know that I have not had the greatest fortune in the health of my children. My eldest child and only son, Philip, had such a severe dairy intolerance that he nearly died as a baby. We eventually got that under control. What I haven't told you is that at the age of 10 months he was diagnosed with temporal lobe epilepsy. This is not an opinion on that particular can of worms so I shall say no more about it, other than he came off the medication at the age of twelve and has managed without ever since. He is now 22 years old with two little sons of his own. He is now only affected by strobe lights and has small fits in his sleep. Philip was in the first year of secondary school. The dairy intolerance was under control and the epilepsy was almost gone. Thank goodness for that. His education had suffered miserably due to the sedating effect of the epilepsy medication. We all looked forward to a promising future for him. Oh, complacency is such a bad idea! Phil was doing well at school and enjoyed basketball and karate as hobbies. I went to his first sports day. He was running in the 1500 metres race. To be honest, I had my reservations about it as he had never done it before and was only given two days notice. In those days I was young and fit;a regular runner. Had I had more time I could have trained him. I expressed my reservations to the school, (this is the wonderful school I discussed in an earlier opinion with regard their bad handling of my youngest daughters ME). I was assured it was fine and that they always chose the events the week before. I gather they do not care whether or not the child has experience; they j
ust want enough competitors for each house. So, I went along to support. Poor Phil made a bit of a spectacle of himself. Some of the boys in the race were regular attendees at the local athletics club, where, incidentally the sports day was held. He chugged along valiantly, but ultimately by the last lap he was the only boy left in the race. I called to him to stop but he was determined. By now he had slowed to a crawl. Then it happened, he collapsed in a heap. The St John's Ambulance people were marvellous. They were there like a shot. They took him off on a stretcher with me in hot pursuit behind. They did not totally know what was wrong with him but he was also complaining about a bad pain in his foot. He was duly despatched to casualty. The hospital said he would be right as rain in a few days. He had sprained his heel and ankle and had heat exhaustion. We thought that was that. Well, you know what thought did!! Several weeks later Phil asked me to look at his knee. It was a bit swollen. He also had a high temperature. I asked him if he had banged it on something. It seemed not. I knew something was wrong when he missed Karate (the love of his life at the time) two weeks running. He felt generally unwell and was getting a lot of fevers. I decided to get an appointment to see our GP the following week. It takes that long to get an appointment! However, the day before we were due to see the doctor Phil was getting ready for bed. He called me upstairs to look at his knee. I was shocked. It was the size of a football, with no exaggeration. It was red hot to the touch and he was in pain. I telephoned the Doctor and said it was an emergency. The Doctor took one look and said "I want him checked at the hospital tomorrow. I will get you an emergency appointment". In the mean time, he took several blood tests and told us to give Phil Ibuprofen regularly. The next day we went to the hospital. Our GP
obviously knew what was wrong, as he had sent us to the rheumatologist. I did not fully understand the implications of it at the time. Philip was tested very thoroughly. He was immediately admitted to hospital. We had our diagnosis- Juvenile Rheumatoid Arthritis, also known as Juvenile Chronic Arthritis. It was previously called Still's Disease. Let me tell you a little about the disease before telling more about how it affected us: WHAT IS JUVENILE ARTHRITIS There are three main types of juvenile arthritis. 1. POLYARTHRITIS: This type is more common in girls, for some reason. It usually involves 5 or more joints. It mostly attacks the smaller joints such as fingers and toes although the bigger joints can be affected. With this type it is quite common for the same joint to be affected on both sides of the body. 2. PAUCI-ARTICULAR ARTHRITIS: This one is the most common. It affects up to 4 joints, which are usually the larger joints, such as knees and ankles. 3. SYSTEMIC JUVENILE ARTHRITIS: This one not only affects the joints, but also the internal organs. There can be fever and a rash. My poor son had the second and third type together! WHAT ARE THE SYMPTOMS? The symptoms can vary quite a lot. Some children are affected severely and in others it might, mercifully, only be mild. You need to look out for: Swelling and redness in a joint/joints. Stiffness around joints, especially on rising in the morning. Limping or problems using a hand or arm. Constant or recurring pain in a joint. Sudden difficulty in moving a joint. Excess heat in a joint which you can feel externally. Be especially wary if any of these symptoms are accompanied by a fever or rash. The children sometimes also have swollen glands. EXTRA COMPLICATIONS On rare occasions children may develop an inflammation of the h
eart and lungs. There is a severe complication associated with Pauci-articular arthritis. This is an eye inflammation called "Chronic Iridocylitis". Philip had to see the eye specialist very frequently to be monitored, just in case. We were lucky he didn't get it! Stunted growth can also occur, as can deformity of the joints if the condition is not managed properly. THE CAUSE Sorry! It isn't really known. It is an auto-immune disease where the body attacks itself, in a way. It can sometimes follow a virus. They say it doesn't generally run in families, but one of my daughters also developed it, albeit in a much milder form. It can start at any time, but is most common at the ages of 3-4 and again at puberty. This is, of course, when it nobbled my son! HOW LONG DOES IT LAST? How long is a piece of string? For some it will only last for a few months and for others it can go on for years. For us it was the latter and to this day he has trouble in the winter. DIAGNOSIS A number of tests are taken, as there is no one sure method. Physical examination and blood tests are undertaken and possibly X-rays. TREATMENT It is vital that the child has a daily exercise programme, which will be given to you by a physiotherapist. Often, bed rest will be required and sometimes the joint or joints will need splinting. This prevents a deformity in the joint. Drugs: It is usual to provide a non-steroidal inflammatory drug, such as Naprosyn or Voltarol. Phil mostly had Naprosyn. Hydrotherapy is often given at the hospital as part of the treatment. So, back to my story: Philip had many long stays in hospital. He was unable to attend school for most of Y7 and Y8. The disease progressed quickly. His thumbs, neck, wrists and ankles were affected as well as his knees. One knee was massively swollen and there was always a great concer
n on the part of the rheumatologist, that it would become deformed. It did not. I put that entirely down to the excellent care he had under the superb rheumatologist we are blessed with in Basingstoke. Oh, come on, we have to have something going for us in Basingstoke!! He was assigned a personal physiotherapist who saw Phil daily, regardless of whether he was in hospital, at school or at home. He had hydrotherapy several times a week. My younger children suffered a bit, as I had to stay in the hospital with him for long stretches of time. At one time I had a daughter in at the same time. The hospital put them in adjacent beds and they were in for a month. Oh happy days!! This went on for six years before it started to subside. There were often big flare-ups. He was often splinted and sometimes in a wheel chair. He developed psoriasis which can sometimes come along with arthritis and was always in pain. His education suffered and he did not get the grades he was capable of at GCSE. At least he was beginning to get better. That was the main thing. At 17 when he was in a period of remission he took up kickboxing and got his black belt. He went on to teach it. For us, this was a miracle we could not even have dreamed of. There is light at the end of the tunnel; it just seems a very long way away when you are still in the tunnel! I do hope this has been of some help to somebody.
This can take many different forms and can be distressing to both the parent and child. Please share your experience or advice on this matter, with the other users.